This week's focus was to get me on my feet as much as possible with a eye towards walking. On Wednesday they brought out this contraption known as a LiteGait. It comes with a complicated harness and hoists you up so that you can walk without the burden of your own body weight. It is essentially a Jolly Jumper for grown ups. Only, Jolly Jumpers are supposed to be fun. The LiteGait is a great tool but I would not call it fun, let alone comfortable. The harness straps around your groin so that is where the burden of your body weight is felt. It kind of felt like a rock climbing harness/bicycle seat. Of course, being my first time in this contraption, there were a lot of necessary adjustments to be made before they were happy with my set up. In the end I was up and down four times and walked the length of the hallway outside the physio room. We are going to try again next week and will hopefully be up and running (well, inching) more smoothly.
I spent the rest of the week doing strengthening exercises and standing/walking with the parallel bars. My stamina is getting better and I'm noticing the return of some muscle mass in my legs. I am also a big pile of jello at the moment and really enjoying the weekend break.
I don't have a whole lot else to report this week. Life in the rehab hospital is becoming routine and is not so bad.
Sunday, January 24, 2016
Saturday, January 16, 2016
CIDP and Me Phase 3 - Baby Steps
Week 2 in rehab went well, although, it was a little chaotic. I had IVIG all week and an MRI on Monday. I have now had more ambulance rides than anyone should ever have. This is what they use to transport patients to other hospitals - our tax dollars at work:)
The IVIG treatments went well. I had no headaches or flu-like symptoms at all. I was pretty wiped out by the end of the week, but that's normal. The tough part was getting up between 5:40 and 6 every day (I'm out of practice for that) and missing morning therapy.
I did manage to get an hour of OT and an hour of PT each day in the afternoon though and really worked hard to make up for the lost mornings. I continue to get stronger each day, which is great.
The main goal in physio this week was to get me into a pair of shoes. They need me in shoes before we can work on standing. This may sound simple enough, but, alas, it is not. My feet are not currently cooperative with footwear. My toes fold under whenever I try to put on shoes and it hurts. A lot. My AFOs (ankle foot orthothosis) do not cover my full foot, so are no help. I met with the pedorthist on Monday with my AFOs and old running shoes to see what could be done. She determined that I need a combination of full-foot AFOs and a deeper and larger shoe. When I arrived on Friday I found both of these waiting for me. The shoe is not the most stylish piece of footwear available, but also isn't too bad. It is a white sneaker with velccro - I felt a little like I was a kid again. Anyway, it worked! The shoes fit nicely without damaging my toes. Next up - standing!
I was a little nervous about standing as it had been a few weeks. But I'm not going to let nerves stop me. I lined myself up with the parallel bars and 3 spotters and up I went. It was good. On the second stand my physio asked if I could move my foot at all. I lifted (maybe more shifted) each foot a little bit then sat down again. On the third stand I managed to take a few 'steps'. While standing I picked up a foot, moved it forward a few inches, put it down, then picked it up and moved it back again. I did this 3 times with each foot then sat down giddy and exhausted. This is the closest I've been to walking since October! The focus of my physio is now to work on steps and stamina while standing. It will still be a long road but I'm really happy about my progress so far.
Just think of what I can accomplish next week with 3 hours of therapy each day....
The IVIG treatments went well. I had no headaches or flu-like symptoms at all. I was pretty wiped out by the end of the week, but that's normal. The tough part was getting up between 5:40 and 6 every day (I'm out of practice for that) and missing morning therapy.
I did manage to get an hour of OT and an hour of PT each day in the afternoon though and really worked hard to make up for the lost mornings. I continue to get stronger each day, which is great.
The main goal in physio this week was to get me into a pair of shoes. They need me in shoes before we can work on standing. This may sound simple enough, but, alas, it is not. My feet are not currently cooperative with footwear. My toes fold under whenever I try to put on shoes and it hurts. A lot. My AFOs (ankle foot orthothosis) do not cover my full foot, so are no help. I met with the pedorthist on Monday with my AFOs and old running shoes to see what could be done. She determined that I need a combination of full-foot AFOs and a deeper and larger shoe. When I arrived on Friday I found both of these waiting for me. The shoe is not the most stylish piece of footwear available, but also isn't too bad. It is a white sneaker with velccro - I felt a little like I was a kid again. Anyway, it worked! The shoes fit nicely without damaging my toes. Next up - standing!
I was a little nervous about standing as it had been a few weeks. But I'm not going to let nerves stop me. I lined myself up with the parallel bars and 3 spotters and up I went. It was good. On the second stand my physio asked if I could move my foot at all. I lifted (maybe more shifted) each foot a little bit then sat down again. On the third stand I managed to take a few 'steps'. While standing I picked up a foot, moved it forward a few inches, put it down, then picked it up and moved it back again. I did this 3 times with each foot then sat down giddy and exhausted. This is the closest I've been to walking since October! The focus of my physio is now to work on steps and stamina while standing. It will still be a long road but I'm really happy about my progress so far.
Just think of what I can accomplish next week with 3 hours of therapy each day....
Saturday, January 9, 2016
CIDP and Me Phase 3 - Rehab Week 1
I got the call on Monday morning - "Are you still interested in inpatient rehabilitation?", "Um, yes! A thousand times yes!" I was told to arrive at 11am the next day and to bring comfy clothes, shoes (yikes) and my medications. Righto. I spent the rest of Monday cancelling appointments and home care and packing up my stuff. I was sad to have to leave home so soon, but excited to start therapy.
When I arrived on Tuesday I was told that since I came from home, I could go home on weekends! This was a most pleasant surprise. Here I had been trying so hard to avoid going from home and then it turns out to be the best way to do it... Anyway, the rehabilitation and restorative care facility is in an old hospital about 15 minutes from home. It shares the facility with a Veterans nursing home - though this is in a totally separate wing. In a lot of ways it feels like a nursing home. We have hospital beds and a communal dining area and recreational areas. Most of the other patients are seniors and we spend our evenings putting together puzzles and playing cards.
My friend with GBS has been there for a month or so and it was great to see her again. It was also very encouraging to see how much progress she has made. The nursing staff are very nice as are they physio an OT staff.
I was originally assigned a bed in a semi-private room but was moved to a private room on Wednesday. I am very happy about this and really hope I don't get moved (this could happen if someone needs to be in isolation for an infection or something). I have a window that looks into a little courtyard. I also have my own washroom. The room is very utilitarian, but it's bright and clean and quiet. I've been sleeping well.
Tuesday and Wednesday were kind of orientation days. I went through a lot of assessments to see where I am at and to allow them to come up with a plan for me. I get 2 hours of physiotherapy a day and one hour of occupational therapy a day. I may also sign up for recreational therapy - possibly yoga or Tai Chi if I have the energy to add more. I will only get one hour of each therapy in IVIG weeks as I will be at the hospital for infusions in the mornings.
My morning physio is pretty similar to the exercises I have been doing only with some different gadgets to assist. I was able to lift my butt off of the mat doing supported bridges, which is new and very exciting. Physio also has this neat neurological bike that senses how much effort you can do and compensates for the rest. I did 20 minutes of this on Thursday and it really felt good. I think this will make a big difference pretty quickly. In the afternoons I am doing an upper body workout with weights.
Occupational Therapy has some overlap with physio but is more focused on fine motor skills. I am doing a lot of exercises for my hands and wrists in these sessions. I am also starting to work on sliding my feet out in front of me from a seated position. I will be ecstatic when I can do this.
I find that I am exhausted but in a good way at the end of the day and I am just really happy to be getting this therapy. I feel stronger already and am really working on doing as much as possible for myself. The nursing staff are all great and really like my attitude. Apparently I have a doppleganger among the staff, though I have not met her yet.
The food is much better than at the hospital and it turns out one of my neighbours works in the kitchen, so I'm taken care of. It was a little scary when my first 'vegetarian' meal came covered in gravy.... but we have since sorted that out.
I'm home now for my fist weekend and am happy to be here. The dog was really excited to see me:) I'll write more about rehab as the weeks (and probably months) go by.
When I arrived on Tuesday I was told that since I came from home, I could go home on weekends! This was a most pleasant surprise. Here I had been trying so hard to avoid going from home and then it turns out to be the best way to do it... Anyway, the rehabilitation and restorative care facility is in an old hospital about 15 minutes from home. It shares the facility with a Veterans nursing home - though this is in a totally separate wing. In a lot of ways it feels like a nursing home. We have hospital beds and a communal dining area and recreational areas. Most of the other patients are seniors and we spend our evenings putting together puzzles and playing cards.
My friend with GBS has been there for a month or so and it was great to see her again. It was also very encouraging to see how much progress she has made. The nursing staff are very nice as are they physio an OT staff.
I was originally assigned a bed in a semi-private room but was moved to a private room on Wednesday. I am very happy about this and really hope I don't get moved (this could happen if someone needs to be in isolation for an infection or something). I have a window that looks into a little courtyard. I also have my own washroom. The room is very utilitarian, but it's bright and clean and quiet. I've been sleeping well.
Tuesday and Wednesday were kind of orientation days. I went through a lot of assessments to see where I am at and to allow them to come up with a plan for me. I get 2 hours of physiotherapy a day and one hour of occupational therapy a day. I may also sign up for recreational therapy - possibly yoga or Tai Chi if I have the energy to add more. I will only get one hour of each therapy in IVIG weeks as I will be at the hospital for infusions in the mornings.
My morning physio is pretty similar to the exercises I have been doing only with some different gadgets to assist. I was able to lift my butt off of the mat doing supported bridges, which is new and very exciting. Physio also has this neat neurological bike that senses how much effort you can do and compensates for the rest. I did 20 minutes of this on Thursday and it really felt good. I think this will make a big difference pretty quickly. In the afternoons I am doing an upper body workout with weights.
Occupational Therapy has some overlap with physio but is more focused on fine motor skills. I am doing a lot of exercises for my hands and wrists in these sessions. I am also starting to work on sliding my feet out in front of me from a seated position. I will be ecstatic when I can do this.
I find that I am exhausted but in a good way at the end of the day and I am just really happy to be getting this therapy. I feel stronger already and am really working on doing as much as possible for myself. The nursing staff are all great and really like my attitude. Apparently I have a doppleganger among the staff, though I have not met her yet.
The food is much better than at the hospital and it turns out one of my neighbours works in the kitchen, so I'm taken care of. It was a little scary when my first 'vegetarian' meal came covered in gravy.... but we have since sorted that out.
I'm home now for my fist weekend and am happy to be here. The dog was really excited to see me:) I'll write more about rehab as the weeks (and probably months) go by.
Saturday, January 2, 2016
Frustrations of Being Middle Class in a Public Health Care System
Don't get me wrong, I am totally in favour of public health care. I also acknowledge that we are in a much better financial place than many people in Nova Scotia. That said, this whole experience has not done a lot to inspire confidence or offer kudos to the 'system'. There are two areas of complaint for this post: our insurance coverage and the public support system.
Neither of us have had cause to really need our insurance in a big way before this - sure I wear glasses and was aware that our coverage here is substandard but I figured that the insurance would have us covered for major health issues like this. Wrong. Here are the things that our work insurance does not cover: a wheelchair ramp (construction or rental), items to make the home more accessible (shower bench, commode, bed bar, etc), lift chairs. It will cover up to $400 for a wheelchair - this is barely a drop in the bucket.
The ramp was really the big one for us. This is an expensive item and who is going to build one unless it is needed? We got quotes to rent or build a metal one but these were astronomical. In the end we hired contractors to build it out of wood. We can write it off on our taxes, but it was really not a hit we planned on taking financially. In order to qualify for public assistance on such things you need to have a household income of less than $39,000 - rules us out. I can't imagine how it must be for the poor people scraping by at $45,000 or $50,000 - $39,000 seems really low to qualify for assistance to me (though I agree that we should not be in that bracket). Anyway, we have a ramp now and it's great. But what a horrible experience. First of all, we don't know how long we will need it - might be that after this winter I won't ever need a chair again. However, we need it now (there is no other way for me to get in and out of the house).
The Red Cross offers a good service of free 3-month rentals. We are using this for the wheelchair and a bed bar. Hopefully I won't need the chair beyond that. We've bought other things for the house and will write them off, but again, this stuff should be covered. I'm really shocked and disappointed in our insurance coverage. We've spent over $10,000 of our own money on my healthcare needs this fall.
Insurance does cover home care and we have been approved for it. We will pay up front and be reimbursed, which is annoying. Apparently some plans allow direct billing but not ours.My medications are also covered, so that is good. But the stuff that isn't covered is really a racket. Of course, these are all 'specialized' items so they don't come cheap already. Home health support stores live off of hospitals, homes and insurance - no bargains to be found there. Yes, you can find some used items on kijiji,, but do you really want to risk a faulty or broken mobility aid? And the idea of a second hand toilet item just kind of creeps me out.
On to the public system. The biggest issue here is wait times. I am on more waiting lists than I know what to do with. It took 5 months to get an MRI appointment - this is supposed to be diagnostic! I guess it will show how things have progressed and is still likely useful but not as originally intended. Hopefully it does not reveal something that required urgent attention 5 months ago.
I've been on a waiting list for outpatient physiotherapy since August. I spoke with the physiotherapist who does this while I was in hospital. Her job is 3 days a week and the waiting list stretches back to April! The province needs to hire more people - it's nuts. Private physio is expensive. Our coverage allows for 20 visits in a calendar year - 10 weeks at twice a week.... Not nearly enough for a chronic condition.
I'm not sure if we are still on a waiting list for an occupational assessment of the house. We asked for one in September and have since had a private assessment and an inpatient OT come by for assessment. I expect we'll get a call sometime around Easter. When we followed up in October we were told that one person does visits one day a week. That's useful.
Finally there is rehab. That lovely elusive waiting list that I was placed on in early December. I understand that there are limited beds and that priorities come up unexpectedly, but it would be nice to have something more than 'likely weeks more than months' as a timeline. When I get the call I will be moving in to rehab for at least 4 weeks. We will need to cancel home care and appointments and sort out IVIG. I really hate the uncertainty.
As for home care. This is supposed to be available publicly for all. However, the system is so overburdened that my age and our income level exclude us from eligibility for the public offering. Luckily this is one area our insurance will take care of.
So there it is, the airing of grievances... I don't know how to fix the system but something really needs to be done. We have an aging population with more and more people relying on what the province can provide. We need more investment in things like physiotherapy and occupational therapy desperately.
Neither of us have had cause to really need our insurance in a big way before this - sure I wear glasses and was aware that our coverage here is substandard but I figured that the insurance would have us covered for major health issues like this. Wrong. Here are the things that our work insurance does not cover: a wheelchair ramp (construction or rental), items to make the home more accessible (shower bench, commode, bed bar, etc), lift chairs. It will cover up to $400 for a wheelchair - this is barely a drop in the bucket.
The ramp was really the big one for us. This is an expensive item and who is going to build one unless it is needed? We got quotes to rent or build a metal one but these were astronomical. In the end we hired contractors to build it out of wood. We can write it off on our taxes, but it was really not a hit we planned on taking financially. In order to qualify for public assistance on such things you need to have a household income of less than $39,000 - rules us out. I can't imagine how it must be for the poor people scraping by at $45,000 or $50,000 - $39,000 seems really low to qualify for assistance to me (though I agree that we should not be in that bracket). Anyway, we have a ramp now and it's great. But what a horrible experience. First of all, we don't know how long we will need it - might be that after this winter I won't ever need a chair again. However, we need it now (there is no other way for me to get in and out of the house).
The Red Cross offers a good service of free 3-month rentals. We are using this for the wheelchair and a bed bar. Hopefully I won't need the chair beyond that. We've bought other things for the house and will write them off, but again, this stuff should be covered. I'm really shocked and disappointed in our insurance coverage. We've spent over $10,000 of our own money on my healthcare needs this fall.
Insurance does cover home care and we have been approved for it. We will pay up front and be reimbursed, which is annoying. Apparently some plans allow direct billing but not ours.My medications are also covered, so that is good. But the stuff that isn't covered is really a racket. Of course, these are all 'specialized' items so they don't come cheap already. Home health support stores live off of hospitals, homes and insurance - no bargains to be found there. Yes, you can find some used items on kijiji,, but do you really want to risk a faulty or broken mobility aid? And the idea of a second hand toilet item just kind of creeps me out.
On to the public system. The biggest issue here is wait times. I am on more waiting lists than I know what to do with. It took 5 months to get an MRI appointment - this is supposed to be diagnostic! I guess it will show how things have progressed and is still likely useful but not as originally intended. Hopefully it does not reveal something that required urgent attention 5 months ago.
I've been on a waiting list for outpatient physiotherapy since August. I spoke with the physiotherapist who does this while I was in hospital. Her job is 3 days a week and the waiting list stretches back to April! The province needs to hire more people - it's nuts. Private physio is expensive. Our coverage allows for 20 visits in a calendar year - 10 weeks at twice a week.... Not nearly enough for a chronic condition.
I'm not sure if we are still on a waiting list for an occupational assessment of the house. We asked for one in September and have since had a private assessment and an inpatient OT come by for assessment. I expect we'll get a call sometime around Easter. When we followed up in October we were told that one person does visits one day a week. That's useful.
Finally there is rehab. That lovely elusive waiting list that I was placed on in early December. I understand that there are limited beds and that priorities come up unexpectedly, but it would be nice to have something more than 'likely weeks more than months' as a timeline. When I get the call I will be moving in to rehab for at least 4 weeks. We will need to cancel home care and appointments and sort out IVIG. I really hate the uncertainty.
As for home care. This is supposed to be available publicly for all. However, the system is so overburdened that my age and our income level exclude us from eligibility for the public offering. Luckily this is one area our insurance will take care of.
So there it is, the airing of grievances... I don't know how to fix the system but something really needs to be done. We have an aging population with more and more people relying on what the province can provide. We need more investment in things like physiotherapy and occupational therapy desperately.
Friday, January 1, 2016
Ten Ways To Survive a Long Hospital Stay
I recently spent two months in hospital (see my Treatment Phase 2 post for details) and thought it might be fun to list 10 things that helped me stay sane. These are in no particular order:
1. Make friends with the Nurses. These are the people who look after you day in and out. You need them for everything from adjusting your table when a meal arrives to giving you medication to helping you to the washroom (or alternative if you are not able-bodied enough for a washroom). They can really screw with your day or make it good. Be friendly and appreciative and take the time to get to know them a little bit. I was actually sad to leave many of my nurses behind.
2. Give up any notion of privacy. Seriously, you are in a hospital and can't do much for yourself. It will be a long and hard time if you are embarrassed about who sees what on you. They've seen it all before and really aren't judging you - get over it. We had a good ole running joke about my leg hair - even after I managed to convince a nurse (a male one no less) to shave me. People in the hospital are required to make note of your bowel movements for goodness sake - there is no shame here.
3. Find the humour and learning experiences in your roommates. I was in a semi-private room. This meant that there was a curtain separating me from the next bed. I had 15 roommates over 2 months. Some were great, some were terrible and most were tolerable. I tried to be personable without getting too involved - I was not there to make buddies and most were not exactly in my age bracket. I learned that I do not have a lot of time for teenagers and teenage drama. I also learned that dilauded can make religious French men swear like sailors. I learned that I don't want a hysterectomy as it makes you really gassy for a couple days (it also was the recipient of more pain complaints than joint replacements). I learned that rating ones pain on a scale of 1-10 is really, really subjective. I learned that people are generally in and out of the hospital way quicker than I ever imagined. I learned that dementia is really horrible, especially for the family, but that you have to find a little humour in it to survive the sleepless nights (this may make me a horrible person).
4. Don't expect to receive your exact food order. It took me a week to find out they had a separate menu for vegetarians. This helped somewhat. The vegetarian dahl turned out to not be that bad. However, it seemed that regardless of what I ordered, I ended up with dahl half the time anyway. Pretty much every meal had some kind of substitution or missing item. Roll with it - none of it is that good anyway.
5. Make the most of visits. Visits really make it bearable in there. Even if people only stay a few minutes - it's great to get some news of the outside and be reminded that you have a life to go back to. The flowers, chocolates, crosswords and other goodies help too:)
6. Try to make a bit of a routine or goals in your day. This may sound crazy or a little too Virgo, but it helped me. There are things you can't control but do what you can. My day was basically - vitals at 7, doze until 8, call for breakfast, eat, bathe, speak with doctor of the week (who would normally arrive during bathing or an even more inconvenient time), read for a bit, morning physio, time in chair - wheel laps around the floor, have lunch, do some colouring or crosswords, back to bed for a rest, visit from Scott - back in chair, trip to Tims, back to bed, order dinner, evening physio, read or play phone games until sleepy. Sleep. Repeat. I made sure to do laps every day - more if I was not likely to get over to Tims. I found sitting in my room by myself in the chair just led to me staring at the clock wondering if I had been up long enough. Getting around a bit was key.
7. Find something fun and easy to read. I tried reading serious things but gave up and gave into the fluff. For me the TV held no interest - it was hard to get it at an angle that I could see properly and I can't stand commercials. I maybe watched 3 shows the whole time I was there. But I always had a book on the go.
8. A smartphone. The wifi was crappy but good enough for Facebook and Candy Crush. It was also good for receiving pictures of the dog and chatting with friends and family.
9. Actually need to be there. I did not mind being in hospital for the first 7 weeks or so. I was tired, sore, and in a bit of a rough way. I was not overly bored until I was. Once that happened I knew it was time to go.
10. A little stoicism goes a long way. It is what it is. If it can't be changed there is no point fighting it. Do what you can to make the most of your situation and accept it for what it is. If you can, look at the positive. In my case the hospital helped us address a number of practical issues that were coming to a head. Of course, I missed being home and the dog terribly, but I knew I'd get back eventually.
1. Make friends with the Nurses. These are the people who look after you day in and out. You need them for everything from adjusting your table when a meal arrives to giving you medication to helping you to the washroom (or alternative if you are not able-bodied enough for a washroom). They can really screw with your day or make it good. Be friendly and appreciative and take the time to get to know them a little bit. I was actually sad to leave many of my nurses behind.
2. Give up any notion of privacy. Seriously, you are in a hospital and can't do much for yourself. It will be a long and hard time if you are embarrassed about who sees what on you. They've seen it all before and really aren't judging you - get over it. We had a good ole running joke about my leg hair - even after I managed to convince a nurse (a male one no less) to shave me. People in the hospital are required to make note of your bowel movements for goodness sake - there is no shame here.
3. Find the humour and learning experiences in your roommates. I was in a semi-private room. This meant that there was a curtain separating me from the next bed. I had 15 roommates over 2 months. Some were great, some were terrible and most were tolerable. I tried to be personable without getting too involved - I was not there to make buddies and most were not exactly in my age bracket. I learned that I do not have a lot of time for teenagers and teenage drama. I also learned that dilauded can make religious French men swear like sailors. I learned that I don't want a hysterectomy as it makes you really gassy for a couple days (it also was the recipient of more pain complaints than joint replacements). I learned that rating ones pain on a scale of 1-10 is really, really subjective. I learned that people are generally in and out of the hospital way quicker than I ever imagined. I learned that dementia is really horrible, especially for the family, but that you have to find a little humour in it to survive the sleepless nights (this may make me a horrible person).
4. Don't expect to receive your exact food order. It took me a week to find out they had a separate menu for vegetarians. This helped somewhat. The vegetarian dahl turned out to not be that bad. However, it seemed that regardless of what I ordered, I ended up with dahl half the time anyway. Pretty much every meal had some kind of substitution or missing item. Roll with it - none of it is that good anyway.
5. Make the most of visits. Visits really make it bearable in there. Even if people only stay a few minutes - it's great to get some news of the outside and be reminded that you have a life to go back to. The flowers, chocolates, crosswords and other goodies help too:)
6. Try to make a bit of a routine or goals in your day. This may sound crazy or a little too Virgo, but it helped me. There are things you can't control but do what you can. My day was basically - vitals at 7, doze until 8, call for breakfast, eat, bathe, speak with doctor of the week (who would normally arrive during bathing or an even more inconvenient time), read for a bit, morning physio, time in chair - wheel laps around the floor, have lunch, do some colouring or crosswords, back to bed for a rest, visit from Scott - back in chair, trip to Tims, back to bed, order dinner, evening physio, read or play phone games until sleepy. Sleep. Repeat. I made sure to do laps every day - more if I was not likely to get over to Tims. I found sitting in my room by myself in the chair just led to me staring at the clock wondering if I had been up long enough. Getting around a bit was key.
7. Find something fun and easy to read. I tried reading serious things but gave up and gave into the fluff. For me the TV held no interest - it was hard to get it at an angle that I could see properly and I can't stand commercials. I maybe watched 3 shows the whole time I was there. But I always had a book on the go.
8. A smartphone. The wifi was crappy but good enough for Facebook and Candy Crush. It was also good for receiving pictures of the dog and chatting with friends and family.
9. Actually need to be there. I did not mind being in hospital for the first 7 weeks or so. I was tired, sore, and in a bit of a rough way. I was not overly bored until I was. Once that happened I knew it was time to go.
10. A little stoicism goes a long way. It is what it is. If it can't be changed there is no point fighting it. Do what you can to make the most of your situation and accept it for what it is. If you can, look at the positive. In my case the hospital helped us address a number of practical issues that were coming to a head. Of course, I missed being home and the dog terribly, but I knew I'd get back eventually.
CIDP And Me - Treatment Phase 2 (Hospital Daze)
I broke my ankle badly on October 23, 2015. In a lot of ways this was actually a good thing to happen - this is how messed up our health system is. Yes, it was painful and awful. However, in that split second I solved so many problems. First off, I was admitted to hospital, so getting to and from IVIG would not be an issue (it could come to me). Second, inpatient physiotherapy and occupational therapy were made available. Third, I got to see the neurologist 6 weeks early and he agreed to increase the frequency of IVIG and introduce Prednisone once the break healed. Finally I had assurances from my doctor and the orthopedic surgeon that I would not be forced home until I was ready and until it was safe to do so. A pretty dramatic way to get the system working, granted.
I did not expect to be in hospital for two months. But I was. And I survived, relative sanity in check. I had surgery on my ankle and now have a plate and 6 screws. I am also still wheelchair bound. However, for the first time since this started, I am seeing steady improvements. I remain optimistic and am more determined than ever to get back on my feet. But I'm getting ahead of myself.
The first couple weeks in hospital are a bit of a haze. I was on a lot of pain killers and IVIG. I was shown how to transfer from the bed to a wheelchair and was told I should absolutely not have been walking at the point I was at when the break happened (oops). I was also placed on a crap load of saline which bloated me up like a whale. For awhile the swelling in my left (non-broken) ankle hurt more than the broken one. Physiotherapy and good riddance to the saline drip fixed that eventually. I was given a brace for my left foot to keep the drop foot in check. I was told to wear this whenever I was not in my wheelchair, which was most of the time.
Mom and Dad came up to stay for the first couple weeks and were a great source of company for me and a big help to Scott and Barney at home. I also had regular visits from friends and co-workers that made things more bearable. When on a lot of painkillers the daily schedule in the hospital goes by pretty quickly. I really didn't mind being there for the first 7 weeks or so.
Overtime I became pretty proficient at getting in and out of my wheelchair and wheeling myself around. I did laps of the floor or went on excursions across a pedway to Tim Hortons or Subway. I was thrilled with my feat of strength the first time I wheeled myself across the pedway. My upper body strength is great at the moment. I also lost a lot of weight in hospital. Partly because my appetite was really low at first and then my digestion was off. I hope to keep most of it off (though Prednisone brought my appetite back pretty quickly).
As for my legs... I think the early days in hospital can be considered my bottom. I was totally useless (and numb and tingly) from the knee down and was not able to raise my knee up unassisted (on good or broken leg). The inpatient physiotherapists worked with me to improve this. It took some time to convince them to do more than get me in my chair, but my stubbornness and determination won them over before long. By the end I was gaining strength in both upper legs and making good progress.
After 6 weeks the cast came off and I was given the OK to put weight on my right foot. Physio and OT came in the next day all smiles and said - "do you want to stand?". Of course I did though I was scared shitless to try. Not one to balk from a challenge, I agreed and did it. Standing in this case was with a walker and two people helping to hold me up. I 'stood' for a minute and a half the first time. Most of the work was done by my upper body and it nearly killed me. I was ecstatic. We did it again later and then pretty much daily for the rest of my stay. I got up to three minutes and was relying less and less on my arms. Some days my ankle hurt too much to stand long and others (especially when on IVIG) I was too tired to do too much, but I always did what I could.
I was also started on a weaning dose of Prednisone at this time. The Prednisone really did help. The little tingling I had in my fingers is all but gone and my energy level increased. I'm not sure if it's the Prednisone, increased IVIG, or both, but whatever it is, I am on the up and up for a change. When I met with the neurologist on Dec 16 he agreed that progression appears to have stopped. He was encouraged by this and the physio improvements. As usual, he did caution that it is a long road ahead. Still, at least it is now a road in the right direction.
When the cast came off I was recommended for rehabilitation at the public centre nearby. I met with the nurse from there and then the Physiatrist who runs the place. I was placed on a waiting list and given the oh so precise estimate of 'likely weeks more than months'. Hmm. This was followed by much confusion about whether or not my place on this elusive waiting list would change if I went home. It seemed everyone I talked to had a different opinion. At the end of the day I did not want to risk anything so decided to stay where I was. I was also reluctant to lose the daily physiotherapy that was starting to go so well.
After a few weeks the tune was changed and all agreed that I could wait at home with no penalty. By this time I was ready to leave. Physiotherapy was still good but Scott and I could manage everything except standing. We decided that I would go home following my last IVIG treatment on Christmas Eve.
This is where I am now - at home, in a wheelchair, waiting for rehab. We are sticking with the physio exercises and I am continuing to get stronger. Next week I start what I call Treatment Phase 3 - I will have home care two days a week while Scott is at work and will need to work ambulatory care IVIG back in the mix. I will also need to sort out private physio again or find out where I am on the outpatient waiting list. All of this assumes no call from rehab... Ah back to the days of uncertainty. Yay.
I did not expect to be in hospital for two months. But I was. And I survived, relative sanity in check. I had surgery on my ankle and now have a plate and 6 screws. I am also still wheelchair bound. However, for the first time since this started, I am seeing steady improvements. I remain optimistic and am more determined than ever to get back on my feet. But I'm getting ahead of myself.
The first couple weeks in hospital are a bit of a haze. I was on a lot of pain killers and IVIG. I was shown how to transfer from the bed to a wheelchair and was told I should absolutely not have been walking at the point I was at when the break happened (oops). I was also placed on a crap load of saline which bloated me up like a whale. For awhile the swelling in my left (non-broken) ankle hurt more than the broken one. Physiotherapy and good riddance to the saline drip fixed that eventually. I was given a brace for my left foot to keep the drop foot in check. I was told to wear this whenever I was not in my wheelchair, which was most of the time.
Mom and Dad came up to stay for the first couple weeks and were a great source of company for me and a big help to Scott and Barney at home. I also had regular visits from friends and co-workers that made things more bearable. When on a lot of painkillers the daily schedule in the hospital goes by pretty quickly. I really didn't mind being there for the first 7 weeks or so.
Overtime I became pretty proficient at getting in and out of my wheelchair and wheeling myself around. I did laps of the floor or went on excursions across a pedway to Tim Hortons or Subway. I was thrilled with my feat of strength the first time I wheeled myself across the pedway. My upper body strength is great at the moment. I also lost a lot of weight in hospital. Partly because my appetite was really low at first and then my digestion was off. I hope to keep most of it off (though Prednisone brought my appetite back pretty quickly).
As for my legs... I think the early days in hospital can be considered my bottom. I was totally useless (and numb and tingly) from the knee down and was not able to raise my knee up unassisted (on good or broken leg). The inpatient physiotherapists worked with me to improve this. It took some time to convince them to do more than get me in my chair, but my stubbornness and determination won them over before long. By the end I was gaining strength in both upper legs and making good progress.
After 6 weeks the cast came off and I was given the OK to put weight on my right foot. Physio and OT came in the next day all smiles and said - "do you want to stand?". Of course I did though I was scared shitless to try. Not one to balk from a challenge, I agreed and did it. Standing in this case was with a walker and two people helping to hold me up. I 'stood' for a minute and a half the first time. Most of the work was done by my upper body and it nearly killed me. I was ecstatic. We did it again later and then pretty much daily for the rest of my stay. I got up to three minutes and was relying less and less on my arms. Some days my ankle hurt too much to stand long and others (especially when on IVIG) I was too tired to do too much, but I always did what I could.
I was also started on a weaning dose of Prednisone at this time. The Prednisone really did help. The little tingling I had in my fingers is all but gone and my energy level increased. I'm not sure if it's the Prednisone, increased IVIG, or both, but whatever it is, I am on the up and up for a change. When I met with the neurologist on Dec 16 he agreed that progression appears to have stopped. He was encouraged by this and the physio improvements. As usual, he did caution that it is a long road ahead. Still, at least it is now a road in the right direction.
When the cast came off I was recommended for rehabilitation at the public centre nearby. I met with the nurse from there and then the Physiatrist who runs the place. I was placed on a waiting list and given the oh so precise estimate of 'likely weeks more than months'. Hmm. This was followed by much confusion about whether or not my place on this elusive waiting list would change if I went home. It seemed everyone I talked to had a different opinion. At the end of the day I did not want to risk anything so decided to stay where I was. I was also reluctant to lose the daily physiotherapy that was starting to go so well.
After a few weeks the tune was changed and all agreed that I could wait at home with no penalty. By this time I was ready to leave. Physiotherapy was still good but Scott and I could manage everything except standing. We decided that I would go home following my last IVIG treatment on Christmas Eve.
This is where I am now - at home, in a wheelchair, waiting for rehab. We are sticking with the physio exercises and I am continuing to get stronger. Next week I start what I call Treatment Phase 3 - I will have home care two days a week while Scott is at work and will need to work ambulatory care IVIG back in the mix. I will also need to sort out private physio again or find out where I am on the outpatient waiting list. All of this assumes no call from rehab... Ah back to the days of uncertainty. Yay.
CIDP And Me - Treatment Phase 1
Continued from my last post....
I found myself at the end of August 2015 with a diagnosis and treatment plan. I felt confident and hopeful. My neurologist cautioned that this would be a long road and that it could take a year before the nerves repaired and we knew what kind of permanent damage there was. I'm a glass-half-full kind of girl - I just can't wallow in the negative or worst case scenarios. I knew that a miracle was unlikely with IVIG but I was hopeful. I scoured the internet for stories of IVIG and rapid recovery. Partly I wanted to know what I was in for and partly I wanted to know that others came out fine in less time than expected. I found the usual mix of worst case stories, hopeful stories and stories that just added to my confusion. Still, it was comforting to know that others were going through this. I also joined a couple Facebook groups, which have really helped as they are a community of people going through the same or similar things.
I was pretty nervous about the IV thing - I am not good with needles. They make me squeamish and in the past I've had trouble with blood tests. The summer cured me of that, but I was still uneasy. Turns out I have tiny veins. It took time to get an IV into me that worked, but they got one (well 3 over the course of the week). It wasn't too terrible. I had chills and a headache the first day when they tried to increase the rate too much (it was still acceptable for my weight range, just not for me. If you are new to IVIG, pay attention to how you feel at each increase and really be honest with the nurses about it). They stopped the infusion while I warmed up, gave me Tylenol, and set it back to the last acceptable level. After that it went fine. I was told to take Tylenol before arriving the next day. Oh yes, I should mention that IVIG is a 5-day event for me. I may switch it to 2 days now, but that is for a later post.
IVIG made me tired and a little flu-like but was not too bad. I felt a little better the following week but nothing earth-shattering. I have been keeping a daily symptoms log since July and was careful to update this following my first IVIG. This is also the time that I stopped going to work and went on short term disability (I had been working reduced hours since the diagnosis).
As I mentioned, I felt pretty good the week following IVIG and went back to physio. Around 2.5 weeks after I started to decline again. I was now using 2 canes and having difficulty managing the steps on the deck to get into the house. Scott and I were getting pretty stressed about all of this. I was on a waiting list for provincially covered physiotherapy as we were out of private coverage through our insurance. I was also on a waiting list for an occupational therapist to come and assess the house. It seemed that things started progressing faster than we could handle and we really didn't know what to do. Our doctor was great at writing notes and prescriptions but she could not help with the OT/PT stuff.
On a positive note our friends really stepped up and came to the rescue. We had more meals than we could eat, dog-walking assistance, wood-stacking help, you name it. This would be way worse without all of the support our friends have given - yay you guys! My parents also came up for a visit in September and were a big help with the meals and dog.
We made arrangements for my physiotherapist to come to the house as it was becoming really hard to get me out of it. He also arranged for an occupational therapist to come with him one day. This helped - we got some things from the Red Cross and were given some ideas of ways to make things easier. My exercises were scaled back but I kept doing whatever I could each day. I was determined not to let this get the better or me.
By my second round of IVIG, 4 weeks after the first, I had to go up and down the deck steps on my butt. The IVIG helped and I was more mobile at the end of the week, but still worse than I was at the end of the first treatment.
Over the next 3 weeks the same pattern emerged - minor improvement in the week after IVIG followed by a steady and speedy decline. I started falling in the house. By this point I was using a walker or 2 canes. I was also finding it increasingly difficult to get myself up from the couch. By the end I was living in bed and only walking to get to the washroom. We were getting really concerned about how I would get to my next IVIG treatments - they don't do them at home here. I was also beginning to feel tingling in my fingers, which was scary. The legs were bad enough, I did not want to start losing strength and mobility in my arms and hands too.
Then came 'the incident'. On October 23 I was walking back from the washroom with my walker (and Scott spotting from behind) when I tripped over my foot and broke my ankle.We called 911 and off I went to hospital...
I found myself at the end of August 2015 with a diagnosis and treatment plan. I felt confident and hopeful. My neurologist cautioned that this would be a long road and that it could take a year before the nerves repaired and we knew what kind of permanent damage there was. I'm a glass-half-full kind of girl - I just can't wallow in the negative or worst case scenarios. I knew that a miracle was unlikely with IVIG but I was hopeful. I scoured the internet for stories of IVIG and rapid recovery. Partly I wanted to know what I was in for and partly I wanted to know that others came out fine in less time than expected. I found the usual mix of worst case stories, hopeful stories and stories that just added to my confusion. Still, it was comforting to know that others were going through this. I also joined a couple Facebook groups, which have really helped as they are a community of people going through the same or similar things.
I was pretty nervous about the IV thing - I am not good with needles. They make me squeamish and in the past I've had trouble with blood tests. The summer cured me of that, but I was still uneasy. Turns out I have tiny veins. It took time to get an IV into me that worked, but they got one (well 3 over the course of the week). It wasn't too terrible. I had chills and a headache the first day when they tried to increase the rate too much (it was still acceptable for my weight range, just not for me. If you are new to IVIG, pay attention to how you feel at each increase and really be honest with the nurses about it). They stopped the infusion while I warmed up, gave me Tylenol, and set it back to the last acceptable level. After that it went fine. I was told to take Tylenol before arriving the next day. Oh yes, I should mention that IVIG is a 5-day event for me. I may switch it to 2 days now, but that is for a later post.
IVIG made me tired and a little flu-like but was not too bad. I felt a little better the following week but nothing earth-shattering. I have been keeping a daily symptoms log since July and was careful to update this following my first IVIG. This is also the time that I stopped going to work and went on short term disability (I had been working reduced hours since the diagnosis).
As I mentioned, I felt pretty good the week following IVIG and went back to physio. Around 2.5 weeks after I started to decline again. I was now using 2 canes and having difficulty managing the steps on the deck to get into the house. Scott and I were getting pretty stressed about all of this. I was on a waiting list for provincially covered physiotherapy as we were out of private coverage through our insurance. I was also on a waiting list for an occupational therapist to come and assess the house. It seemed that things started progressing faster than we could handle and we really didn't know what to do. Our doctor was great at writing notes and prescriptions but she could not help with the OT/PT stuff.
On a positive note our friends really stepped up and came to the rescue. We had more meals than we could eat, dog-walking assistance, wood-stacking help, you name it. This would be way worse without all of the support our friends have given - yay you guys! My parents also came up for a visit in September and were a big help with the meals and dog.
We made arrangements for my physiotherapist to come to the house as it was becoming really hard to get me out of it. He also arranged for an occupational therapist to come with him one day. This helped - we got some things from the Red Cross and were given some ideas of ways to make things easier. My exercises were scaled back but I kept doing whatever I could each day. I was determined not to let this get the better or me.
By my second round of IVIG, 4 weeks after the first, I had to go up and down the deck steps on my butt. The IVIG helped and I was more mobile at the end of the week, but still worse than I was at the end of the first treatment.
Over the next 3 weeks the same pattern emerged - minor improvement in the week after IVIG followed by a steady and speedy decline. I started falling in the house. By this point I was using a walker or 2 canes. I was also finding it increasingly difficult to get myself up from the couch. By the end I was living in bed and only walking to get to the washroom. We were getting really concerned about how I would get to my next IVIG treatments - they don't do them at home here. I was also beginning to feel tingling in my fingers, which was scary. The legs were bad enough, I did not want to start losing strength and mobility in my arms and hands too.
Then came 'the incident'. On October 23 I was walking back from the washroom with my walker (and Scott spotting from behind) when I tripped over my foot and broke my ankle.We called 911 and off I went to hospital...
CIDP And Me - The Beginning
The purpose of this blog is to provide some general information about CIDP, to share my own progress with family and friends and, hopefully, to provide some answers for others out there who find themselves with a similar diagnosis. My first post addressed the first goal - What is CIDP? This post is more personal in nature and is aimed at the second, though may be interesting to the third as well.
I was diagnosed with CIDP in August, 2015 though I started showing symptoms in March or April. I kept things pretty quiet for a long time and there are still many friends out there who do not know what is going on. I am not ashamed of this or anything, just didn't quite know how to go about broadcasting it. Family, co-workers, friends who live nearby and some of my closest friends know a little more, of course. The cat was let out of the bag a little on Facebook a week or two ago, so I've decided to go public.
In the beginning... there was pain in my calves. Both calves - weird, right? I figured it was from walking too much wearing ice cleats on my boots (the winter of 2015 was particularly long and brutal in Nova Scotia). After a month or so (I'm stubborn) I went to the doctor who thought it was likely an Achilles issue. She suggested icing, Ibuprofen and physiotherapy. I started with the first 2. A few weeks later I noticed that I was unable to stand on my tip toes. This prompted me to seek out physiotherapy. The initial thinking there was that it was an issue with my soleus or calves. We tried dry needling, heat, stretching and some strength exercises. Over the next 2 months or so I went twice a week with no improvement. In fact, it got worse. My balance was suffering, my feet began to 'tingle' and my muscles were getting weaker. It was also painful to walk any distance.To say it was frustrating was an understatement. Eventually stairs became more and more difficult and even stepping on a piece of gravel would send me teetering. I probably should have started using a cane at this point, but I'm stubborn.
In July I went back to the doctor and had some blood work done. Turned out I was low in B12, which we thought may be the culprit. I also went and got some braces to help with walking. No one had any clue about what was going on and, other than my vet friend, seemed reluctant to send me to a neurologist. In early August my physio asked me to see his chiropractor colleague. This is when things started happening. The chiropractor met with me, did some tests, filmed me walking and doing stairs, then went to talk to my physio. They came back and said that I really needed to see a neurologist and that there was nothing they could do to help me at this point. They sent a letter to my doctor about this. Now, of course, my doctor was on vacation the following week. By this point I had given in and was using a cane. This is also when I decided to stop driving given the absolute shock expressed by the chiropractor when I said I drove to the appointment.
When I finally got in to see the doctor she agreed that it was time to see a neurologist. She called him with me in the office and did a few tests with him on the phone. This was a Friday - he booked an appointment with me for the following Monday. I also had additional blood work done that day and booked a CT scan for the following week in case it was a spinal issue.
The neurologist appointment found me electrocuted and prodded for an EMG and nerve connectivity test. He noted that there was demyelination and some axonal damage and mentioned he suspected CIDP. He scheduled me for a spinal tap at the end of the week and ordered yet more blood work. He also ordered an MRI but the date was not arranged. I left happy that we were getting somewhere. When I got home and looked up CIDP I was less happy but encouraged by the 80% recovery rate. I figured that being young and otherwise healthy, I would easily fall into that 80%. I also figured that once treatment started, it would be up, up, up.
The spinal tap was an experience that I do not care to repeat. It hurt. A lot. And then I had to lie down for two days to avoid a nasty headache. However, the test showed the raised proteins he was expecting to find and confirmed his diagnosis. He ordered me to start IVIG treatments as soon as possible.
I was diagnosed with CIDP in August, 2015 though I started showing symptoms in March or April. I kept things pretty quiet for a long time and there are still many friends out there who do not know what is going on. I am not ashamed of this or anything, just didn't quite know how to go about broadcasting it. Family, co-workers, friends who live nearby and some of my closest friends know a little more, of course. The cat was let out of the bag a little on Facebook a week or two ago, so I've decided to go public.
In the beginning... there was pain in my calves. Both calves - weird, right? I figured it was from walking too much wearing ice cleats on my boots (the winter of 2015 was particularly long and brutal in Nova Scotia). After a month or so (I'm stubborn) I went to the doctor who thought it was likely an Achilles issue. She suggested icing, Ibuprofen and physiotherapy. I started with the first 2. A few weeks later I noticed that I was unable to stand on my tip toes. This prompted me to seek out physiotherapy. The initial thinking there was that it was an issue with my soleus or calves. We tried dry needling, heat, stretching and some strength exercises. Over the next 2 months or so I went twice a week with no improvement. In fact, it got worse. My balance was suffering, my feet began to 'tingle' and my muscles were getting weaker. It was also painful to walk any distance.To say it was frustrating was an understatement. Eventually stairs became more and more difficult and even stepping on a piece of gravel would send me teetering. I probably should have started using a cane at this point, but I'm stubborn.
In July I went back to the doctor and had some blood work done. Turned out I was low in B12, which we thought may be the culprit. I also went and got some braces to help with walking. No one had any clue about what was going on and, other than my vet friend, seemed reluctant to send me to a neurologist. In early August my physio asked me to see his chiropractor colleague. This is when things started happening. The chiropractor met with me, did some tests, filmed me walking and doing stairs, then went to talk to my physio. They came back and said that I really needed to see a neurologist and that there was nothing they could do to help me at this point. They sent a letter to my doctor about this. Now, of course, my doctor was on vacation the following week. By this point I had given in and was using a cane. This is also when I decided to stop driving given the absolute shock expressed by the chiropractor when I said I drove to the appointment.
When I finally got in to see the doctor she agreed that it was time to see a neurologist. She called him with me in the office and did a few tests with him on the phone. This was a Friday - he booked an appointment with me for the following Monday. I also had additional blood work done that day and booked a CT scan for the following week in case it was a spinal issue.
The neurologist appointment found me electrocuted and prodded for an EMG and nerve connectivity test. He noted that there was demyelination and some axonal damage and mentioned he suspected CIDP. He scheduled me for a spinal tap at the end of the week and ordered yet more blood work. He also ordered an MRI but the date was not arranged. I left happy that we were getting somewhere. When I got home and looked up CIDP I was less happy but encouraged by the 80% recovery rate. I figured that being young and otherwise healthy, I would easily fall into that 80%. I also figured that once treatment started, it would be up, up, up.
The spinal tap was an experience that I do not care to repeat. It hurt. A lot. And then I had to lie down for two days to avoid a nasty headache. However, the test showed the raised proteins he was expecting to find and confirmed his diagnosis. He ordered me to start IVIG treatments as soon as possible.
What is CIDP
I have decided to start a blog to track my progression through an annoying and painful autoimmune disorder known as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). What the heck is that - it sounds complicated? This was my reaction when the Neurologist diagnosed me back in August. At that time I knew there was something neurologically wrong based on Google research along with consultations with my GP, Physiotherapist, Chiropractor and Vet (who happens to be a good friend and was actually the first to suggest it was neurological). However, I had no idea what that would actually mean and how serious/debilitating it would become. So, back to my original question:
What is CIDP? This is an autoimmune disorder that is often contracted through a flu or cold virus. It is rare - the statistics seem to settle around 1-2 in 100,000 and it is chronic (meaning there is no 'cure' but many go into long remissions). The acute version is known as GBS (Guillian-Barre Syndrome) and is equally rare. Essentially the immune system is tricked into attacking itself, in this case the attacks are launched at the myelin sheaths that cover the peripheral nerves. Think of your peripheral nerves as wires - the myelin is the plastic coating that ensures the current travels to the right place. When the myelin is damaged, the nerves misfire and can also be damaged. Myelin will regrow at a very slow rate but actual nerve damage can be permanent. It is, therefore, a very good thing to catch this early.
Symptoms normally affect the feet and/or hands first (the peripheral nervous system works from the outside in). Bilateral tingling, numbness, weakness, and loss of balance are the primary symptoms. People may also experience a 'brain fog', vision issues, and problems with bladder control. As with most disorders these days, there are variants depending on the symptoms. I appear to have the basic model and it has struck my feet and legs primarily. I did get some tingling in my fingers but will cover that in a later post that is more about me and less about CIDP in general.
Testing and diagnosis of CIDP is more of a 'rule out other ailments' game than anything else. In my case there was a battery of blood tests, a spinal tap (this was a most uncomfortable experience), EMG and nerve connectivity tests, and an MRI (which was ordered in August and I am scheduled to receive Jan 11 - in my case less of a diagnostic than a check up). The EMG/nerve connectivity and spinal tap were enough for my neurologist to make the call. A lot of people do not neatly fit into the criteria and I've read of many delayed or misdiagnosis as a result. Hopefully more research will be done in this area to come up with a better understanding of the disease and how to identify it.
Treatment generally follows one, or a combination of the following three options: IVIG (Intravenous Immunoglobulin), Prednisone (a corticosteroid), and Plasma Exchange. In cases where these do not work some chemotherapy drugs may be used. Another up and coming treatment is HSTC - stem cell transfer. I am currently receiving regular IVIG and Prednisone.
IVIG is a blood plasma product that is quite costly - each bottle is made up of plasma from 5000 donors. This is not an issue in Canada, but there are many in the United States who have to fight for insurance approval. The medical community is not exactly sure why IVIG works, but it does in 50-70% of cases. My lay-person understanding is that the influx of plasma confuses the immune system so that it stops attacking the myelin. Once the attack stops, the myelin can start to regrow. People on IVIG get infusions on a regular basis (normally every 2-6 weeks) and some need it for very long periods of time.
Prednisone is an immune-suppressing steroid that effectively shuts off the immune system. If used alone, a very high dose is required. Once the immune system is suppressed, the myelin can begin to regrow. The problem is that long term use of high doses of Prednisone comes with a laundry list of side effects that get scarier over time - everything from weight gain to osteoporosis. Most doctors prefer to avoid these if possible and will use smaller short-term courses of Prednisone in combination with other treatments instead. Many Americans who face insurance problems end up on Prednisone as it is cheaper than IVIG. I am currently on a weaning does of Prednisone to help give an added boost to my IVIG treatments.
Plasma Exchange is just that - your own blood is taken out, filtered and re-introduced. This essentially re-sets your immune system. People with small veins may have trouble with this treatment. I don't know a lot about it and have not experienced it myself, so will leave it here. Google will be more than happy to help you find out more.
I'm not going to address the alternate treatments here as I know even less about them than Plasma Exchange.
Apparently the three main treatments are effective in up to 80% of cases. Recovery varies depending on a number of factors, not least is axonal nerve damage. Pretty good odds though - especially for a 39 year old with no underlying health conditions (she says hopefully).
There is lots of information out there and I recommend you look things up if you have questions. The GBS/CIDP Foundation is a great place to start. I apologize for any errors in the above explanation - please let me know if you find any and I will correct it. My goal here was to give a brief overview, not to get into the minutia of this complex and widely varied disorder.
What is CIDP? This is an autoimmune disorder that is often contracted through a flu or cold virus. It is rare - the statistics seem to settle around 1-2 in 100,000 and it is chronic (meaning there is no 'cure' but many go into long remissions). The acute version is known as GBS (Guillian-Barre Syndrome) and is equally rare. Essentially the immune system is tricked into attacking itself, in this case the attacks are launched at the myelin sheaths that cover the peripheral nerves. Think of your peripheral nerves as wires - the myelin is the plastic coating that ensures the current travels to the right place. When the myelin is damaged, the nerves misfire and can also be damaged. Myelin will regrow at a very slow rate but actual nerve damage can be permanent. It is, therefore, a very good thing to catch this early.
Symptoms normally affect the feet and/or hands first (the peripheral nervous system works from the outside in). Bilateral tingling, numbness, weakness, and loss of balance are the primary symptoms. People may also experience a 'brain fog', vision issues, and problems with bladder control. As with most disorders these days, there are variants depending on the symptoms. I appear to have the basic model and it has struck my feet and legs primarily. I did get some tingling in my fingers but will cover that in a later post that is more about me and less about CIDP in general.
Testing and diagnosis of CIDP is more of a 'rule out other ailments' game than anything else. In my case there was a battery of blood tests, a spinal tap (this was a most uncomfortable experience), EMG and nerve connectivity tests, and an MRI (which was ordered in August and I am scheduled to receive Jan 11 - in my case less of a diagnostic than a check up). The EMG/nerve connectivity and spinal tap were enough for my neurologist to make the call. A lot of people do not neatly fit into the criteria and I've read of many delayed or misdiagnosis as a result. Hopefully more research will be done in this area to come up with a better understanding of the disease and how to identify it.
Treatment generally follows one, or a combination of the following three options: IVIG (Intravenous Immunoglobulin), Prednisone (a corticosteroid), and Plasma Exchange. In cases where these do not work some chemotherapy drugs may be used. Another up and coming treatment is HSTC - stem cell transfer. I am currently receiving regular IVIG and Prednisone.
IVIG is a blood plasma product that is quite costly - each bottle is made up of plasma from 5000 donors. This is not an issue in Canada, but there are many in the United States who have to fight for insurance approval. The medical community is not exactly sure why IVIG works, but it does in 50-70% of cases. My lay-person understanding is that the influx of plasma confuses the immune system so that it stops attacking the myelin. Once the attack stops, the myelin can start to regrow. People on IVIG get infusions on a regular basis (normally every 2-6 weeks) and some need it for very long periods of time.
Prednisone is an immune-suppressing steroid that effectively shuts off the immune system. If used alone, a very high dose is required. Once the immune system is suppressed, the myelin can begin to regrow. The problem is that long term use of high doses of Prednisone comes with a laundry list of side effects that get scarier over time - everything from weight gain to osteoporosis. Most doctors prefer to avoid these if possible and will use smaller short-term courses of Prednisone in combination with other treatments instead. Many Americans who face insurance problems end up on Prednisone as it is cheaper than IVIG. I am currently on a weaning does of Prednisone to help give an added boost to my IVIG treatments.
Plasma Exchange is just that - your own blood is taken out, filtered and re-introduced. This essentially re-sets your immune system. People with small veins may have trouble with this treatment. I don't know a lot about it and have not experienced it myself, so will leave it here. Google will be more than happy to help you find out more.
I'm not going to address the alternate treatments here as I know even less about them than Plasma Exchange.
Apparently the three main treatments are effective in up to 80% of cases. Recovery varies depending on a number of factors, not least is axonal nerve damage. Pretty good odds though - especially for a 39 year old with no underlying health conditions (she says hopefully).
There is lots of information out there and I recommend you look things up if you have questions. The GBS/CIDP Foundation is a great place to start. I apologize for any errors in the above explanation - please let me know if you find any and I will correct it. My goal here was to give a brief overview, not to get into the minutia of this complex and widely varied disorder.
Subscribe to:
Comments
(
Atom
)