Looking for advice

General General CIDP Discussion
1

Hi,

This is my first post and I hope I am doing it right. I was diagnosed with CIDP about 6 months ago after I started falling down. Two days after that happened I was admitted to the hospital and spent a long time there. I am now able to walk again and lift my arms and I am learning to appreciate doing things I took for granted. I am undergoing plasma pheresis ever other week. Now I am ready to work on smaller things and I wonder if anybody might have any answers or suggestions. I am back to work but I am tired all of the time. Does anybody have any suggestions on things that may help with tiredness? Although I am tired I can't sleep like I used to but my nurses tell me that may be due to the Solu-Medrol I get with the phresis. Any suggestions? Here's a funny one. During the last 2 weeks my left foot has started to turn inward when I walk! Has anyone had an experience like that? I'm sorry to bother all of you with so many questions at once but my doctors generally shrug their shoulders when I ask the little stuff like this. I think the problem is specialization. The doctor (#1) that puts in my celtral lines has little idea about the treatment they are used for, the specialist (#2) that orders the pheresis admits he does not know about placement of the lines or when to determine if they are infected and need antibiotics and refers me to my family physician for that (doctor #3) who does not know about CIDP (but did refer me to the right doctor thank go0odness) and so far none of them know if the foot turning inward is associated with CIDP. Hey, it never turned inward before, ha! So I figured I would try this forum as a central location to coordinate things so at least I will ask the doctors more intelligent questions or maybe even have some suggestions when I go to them. I guess this kind of experience just goes along with having a rare disease. Any suggestions are appreciated. Thanks, B.

2

Hi B. Don’t ever worry about asking questions of this group!it seems that there are so many different effects caused by this strange condition. Re the fatigue…very early on my nurse specialist talked to me about ‘fatigue management’. As a result I have learnt how to use power naps where I sit or lay very still and try and ‘empty my head’ of all the day’s events etc. I might only have a short time to do this but it seems to work for me.
I have 4 days of ivig infusions every 4 weeks. Again, making sure I rest properly during the infusion week and for at least 2 days after seems to reduce the fatigue.
Gone are the days of high heeled shoes for me!one foot in particular seems to have rolled over.
As the members of this group always say…Stay Strong!

3

Hi B, your story sounds very familiar to mine. Here are some thoughts. Most people with CIDP are on IVIG so I am a bit surprised your first line treatment is plasmapheresis. I’ve had both and although plasmapheresis worked it did not keep me stable. 90% of people on here are on IVIG. It can have some side effects such as headaches but can be managed with premeds or rate given. Also, it can be given subq if you’re interested. That would be the first thing I would find out. Second, your foot should not be turning in at all. That means you either should be looking at braces or physical therapy or both. You either do not have control of that foot or the muscles/ligaments are shrinking. It needs to be addressed. Last, if these doctors are not doing the trick, you need to find one that will ASAP. A neuro with experience in CIDP. Do not waste time. Find one now. Your body is being damaged while you wait. Best of Luck Mary B. by the way. I’ve done a SCT at Northwestern University in Chicago to get rid of my disease completely. It is government trial under Dr. Burt if you are ready to explore that area.

4

I was diagnosed with CIDP almost 3 months ago and it affected me waist down to my feet. No IVIG or Plasmapheresis just cortisteroids and Alanerv vitamin. I can now stand and walk with the aid of a walker and now practicing to use a cane. There were times that I did experience my right foot turning inwards but it happens when my back started to ache due to tiredness. Since the nerves are not sending the right signals due to damaged myelin sheath, wrong impulses are sent to the muscles that controls legs, foot, and arms. I also supplemented my diet with omega 3 oil, ginko biloba (for blood circulation), vitamin D, and regular excersices in the pool.

5

Hi B, I just want you to know that I am in the 10% not receiving ivig and have never had plasma pheresis although that was the first line of recommended defense against the CIDP, my immunoglobulin was deficient therefore nixing plasmapheresis. I wasnt diagnosed right away like you. It took around a year and a half to be diagnosed. I spent a good amount of time in and out of the hospital that first year. I had a lot of adaptive equipment in order to be cared for at home also. I have been in remission just now slipping back into a relapse and on prednisone again. It began with foot and leg drag and weakness. I have to literally lift my leg up to get on my bed, in the car. So to try and nip it in the bud I was restarted on prednisone. (That was my treatment. One year of prednisone settled things down, another year off, now on again). In my humble opinion, the foot turn is possibly related. When I was in physical therapy for this, my ankles were turning. It was suggested to get ankle-foot orthotics. In my case because I was in a wheelchair most of the time and experienced muscle atrophy.
Good luck to you. It sounds like you have a real grip on this. Don’t give up! -mary d

6

well truth be told it does effect everyone differently. my left foot goes outward. So when I walk I look like a penguin..lol. As for sleep I would talk to your doctor about Amatrypoline. It works wonders for me along with 50mg of Thorozine added to the mix.

7

great post!

8

Jackie, thanks for the power nap Idea! Mashrub, I have had IVIG but my condition just got worse until the doctors tried plasma pheresis. I have an appointment with my family physician soon and I am going to ask about the foot turning in. I get Solu-Medrol with the phresis and that seems to have a side effect of giving me a little extra energy for a couple of days and then I steadily get more and more tired until my next treatment. I seem to get a lot more tired now that I am no longer getting the treatments weekly. I am in a deep rural area where there are few doctors who know about this disease and the neurologist that does know about it communicates with 2 doctors about 150 miles away that know more about it. Maybe I need to move to a big city. By the way what is an SCT? Ultimax, my foot started turning inward after I started walking again, I’ll talk to my doctor about the supplements, Thanks. Mary, Thanks for the advice about the orthotics I bet that is the way this is going to go. I had a brace on my left leg to keep my knee from giving out but now fortunately I can walk without it. I bet the doctor will prescribe a different one for the foot turn. Hotwings75 I see what you mean about it affecting everyone differently. Your foot turned outward, wow! I’ll talk to the doctor about sleeping. Mdolich, Thanks for the lead about the magazine, I think what your doctor said makes sense I’ll relay that information to my doctor. Thanks to everyone for replying this is just what I need, more information on which to base my decisions. I think if this were a more common disease I could rely more on the medical profession but since it is not I guess I will have to coordinate things myself and leave the professionals to specialize.

9

Hi All,

Was interested to hear of someone else who takes amatrepyline for sleep I just love it. It is a muscle relaxant which also helps with a touch of Dystonia I have. The story of power naps is very like the 'mindfulness" my Phsychologist has taught me

and, like the power naps, it really eases the exhaustion which I find is almost the worst part of CIDP. I am now 5 years on in my CIDP and am still waiting for my first remission maybe it will come for Xmas. Stay strong and have a pain free day.

10


Mashrub said:
Hi B, your story sounds very familiar to mine. Here are some thoughts. Most people with CIDP are on IVIG so I am a bit surprised your first line treatment is plasmapheresis. I've had both and although plasmapheresis worked it did not keep me stable. 90% of people on here are on IVIG. It can have some side effects such as headaches but can be managed with premeds or rate given. Also, it can be given subq if you're interested. That would be the first thing I would find out. Second, your foot should not be turning in at all. That means you either should be looking at braces or physical therapy or both. You either do not have control of that foot or the muscles/ligaments are shrinking. It needs to be addressed. Last, if these doctors are not doing the trick, you need to find one that will ASAP. A neuro with experience in CIDP. Do not waste time. Find one now. Your body is being damaged while you wait. Best of Luck Mary B. by the way. I've done a SCT at Northwestern University in Chicago to get rid of my disease completely. It is government trial under Dr. Burt if you are ready to explore that area.
11

Thanks for all of the great advice. I replied to everyone in one email but maybe that is not the way to do it. I was wondering what is a SCT?

12

HAVE YOU BEEN DIAGNOSED THRU TESTS OF ANY KIND AS "CIDP"? I.E. "EMG?" BLOOD WORK? SPINAL TAP? MRI? CATSCAN? HIGHPOCKETS

13

SCT is stem cell transplant

14

Yes, I was diagnosed through a spinal tap as having CIDP.

15

I believe SCT stands for Stem Cell Transplant.

B said:

Thanks for all of the great advice. I replied to everyone in one email but maybe that is not the way to do it. I was wondering what is a SCT?
16

Now that I know what SCT is I’ll have to look into that. My central line keeps getting infected and nobody knows why. It would be nice to not have to worry about that problem. Meanwhile I go back to my neurologist next week as it seems I’m going backwards a little bit since we spread the plasma pheresis treatments from weekly to once every other week. Thanks for all of the good advice everyone.

17

Sounds like you got to a doctor quickly enough to help. My whole situation started a little over 9 years ago. Nobody had a clue what was wrong with me. I had a very good experience with a doctor through Wahsington University/ Barnes Jewish Hospital in St. Louis. I had actually gotten to the point of being basically a quadriplegic before I was diagnosed. I had to learn how to do literally everything all over. Was in rehab therapy, inpatient for several months. Currently I have not taken any meds associated to CIDP for several years now. I still have some residual effects that I have learned to live with, but still am able to walk, play golf, pretty much anything I desire. Not going to get into a running race with anyone though, still don't have that capability.

Do they have you wearing the "Bunny Boots" in bed? I hated them, but I feel they actually did help out quite a bit with keeping my feet aligned.

If anyone has any questions, I would be very happy to help as much as I can.

Michael

18

Hi B!
I apologize if this reply doesn’t post correctly, but this is my 1st time on the web & this is new to me. However, you seem to have some parallels to my progression, so I wanted to “chirp in”. It aggravates me when people get passed around from person to person for answers instead of saying “I don’t know” or “I’ll get the answer for you”. So, I’ll try to tell you my experiences & share what I know in the hopes it may help.
I’m sorry you’ve had such a rough road. It is tough when you have a “rare” disease getting everyone to be on the same page and not just hear your concerns, but listen to them as well.
I went undiagnosed for quite some time as physicians, multiple specialists, physical therapists, etc were all convinced a herniated disc in my back was causing my problems. I was so frustrated because no one was listening to me, the patient, that the symptoms I was having were definitely not related to this issue. You think I would know as this was my disc that I’ve dealt with for years, so I know what symptoms & pains it causes when it flairs up.LOL.
Finally, one specialist finally LISTENED to me & a few tests later we had my diagnosis & treatment was underway. I literally cried for all the wasted time I had spent & all the neurons that were lost that I would NEVER get back because people wouldn’t listen to me & kept repeating tests that were already done. But, I was thrilled to not have to deal with this anymore :slight_smile: as I am sure you are as well.
First, I don’t know where you live, but you need to find a neurologist who can treat your CIDP or can refer you to someone w experience to either treat you or oversee your care in coordination w your current doc. Always try to get the best treatment for yourself, be your own best advocate. I know this can be difficult. I was the ONLY patient my doc saw (& they were a specialist) & was so tired of explaining to medical people- docs included- what CIDP stood for & what it is, I started carrying brochures around with me…to try & help educate anyone I could. Please, contact the International GBS-CIDP Foundation, you can find them on the web & they are a phenomenal resource.
I am very concerned about you having repeated infections in your central line. What type of line do you have…PICC, a port, or other central catheter? Have they cultured it to see what comes back? (this way you can determine the source of the infection, what it is & what to treat it with successfully). An Infectious Disease doc can be a fantastic help when sites get repeatedly infected- they really are the experts. Also, when they replace your line, are they just putting it back in the same spot or are they rotating sites? Are you on oral or IV antibiotics? Is everyone who touches your line using sterile/aseptic technique? All these things are very important and can be discussed w/ ANY member of your healthcare team. In regards to this, everyone should be on the same page.
I hope you can resolve this issue quickly, as I know it’s not pleasant having lines changed frequently (as I have been in that predicament). It will also take one thing off your mind so you can stay focused on positive things like getting well!
The fatigue…ugh. That is something I deal with daily. But, I just try to pace myself as best I can & not overdo things. I did find that if I overdo things, I could have an exacerbation of my symptoms. In talking w/ others, many say that as well. I read something on Facebook called “The Spoon Theory”. This was a good way to explain how people with fatigue need to tackle chores in steps/spoons. Its cute, if you care to look at it.
In regards to the steroids causing fatigue, I’ve never heard or experienced that myself. In fact, I’ve experienced the opposite. On steroids, I gain weight, get “jittery”, like a kid on a sugar rush who can’t sit still, can’t sleep well (even less than I do on a regular basis), and find I have a bit more energy. So, I’m sorry, I can’t corrolate your fatigue with the steroids.
Pheresis can be tiring in itself. And you are doing it so frequently. Are you going to continue w pheresis, switch to IgG (which is a standard treatment these days for IgG), switching to oral meds, or will you be stopping treatments as you’re regaining strength back(fantastic!!!) :smiley: Do your docs have a long term plan yet?
I can tell you that fatigue is a symptom common to CIDP patients. For me, I found the best thing was a good diet (I saw Nutritionist/Dietitian as certain nutritional issues are seen w CIDP), eating several small meals/day w frequent snacks & down time for a rest if needed. For me, this helps, but everyone has to find what works for them.
Not sure about your leg turning in. Is it neurological from the disease?, musculoskeletal related to weakness, or something else? These are things to be addressed by a physician/PT. I did have a problem where I was dragging my leg somewhat, but this was related to the progression of the CIDP & was more pronounced when I was fatigued or having an exacerbation of the disease.
Im sorry for the long reply, but I wanted to address your questions/issues. I hope my reply gave you some help. If you need anything, don’t hesitate to reach out to me. I wish you the best & continued progress with regaining your mobility, strength & endurance.
Take care!
NiteOwl
:smiley:

19

What kind of central line do I have? That’s a good question, all I have ever been told is that is that it is a central line. I’ll have to ask for a more specific answer from my doctor or better yet a nurse as they seem to know more ! I have contacted the GBS-CIDP Foundation and I agree they are a great resource just as this forum also is. The nurses have done a culture on my line and this one came back negative Yea! They brought in a wound specialist and she thinks I am allergic to something they are using to sterilize the line weekly. It’s funny, I asked my neurologist if I could overdue things and he said “No”. I have been pushing myself so as to get stronger but every hour or so I have to take a rest. My neurologist is working with another from a larger city for guidance. Thanks for all of the information I am finding out more things here than from my doctor.



NiteOwl said:

Hi B!
I apologize if this reply doesn’t post correctly, but this is my 1st time on the web & this is new to me. However, you seem to have some parallels to my progression, so I wanted to “chirp in”. It aggravates me when people get passed around from person to person for answers instead of saying “I don’t know” or “I’ll get the answer for you”. So, I’ll try to tell you my experiences & share what I know in the hopes it may help.
I’m sorry you’ve had such a rough road. It is tough when you have a “rare” disease getting everyone to be on the same page and not just hear your concerns, but listen to them as well.

I went undiagnosed for quite some time as physicians, multiple specialists, physical therapists, etc were all convinced a herniated disc in my back was causing my problems. I was so frustrated because no one was listening to me, the patient, that the symptoms I was having were definitely not related to this issue. You think I would know as this was my disc that I’ve dealt with for years, so I know what symptoms & pains it causes when it flairs up.LOL.

Finally, one specialist finally LISTENED to me & a few tests later we had my diagnosis & treatment was underway. I literally cried for all the wasted time I had spent & all the neurons that were lost that I would NEVER get back because people wouldn’t listen to me & kept repeating tests that were already done. But, I was thrilled to not have to deal with this anymore :slight_smile: as I am sure you are as well.

First, I don’t know where you live, but you need to find a neurologist who can treat your CIDP or can refer you to someone w experience to either treat you or oversee your care in coordination w your current doc. Always try to get the best treatment for yourself, be your own best advocate. I know this can be difficult. I was the ONLY patient my doc saw (& they were a specialist) & was so tired of explaining to medical people- docs included- what CIDP stood for & what it is, I started carrying brochures around with me…to try & help educate anyone I could. Please, contact the International GBS-CIDP Foundation, you can find them on the web & they are a phenomenal resource.

I am very concerned about you having repeated infections in your central line. What type of line do you have…PICC, a port, or other central catheter? Have they cultured it to see what comes back? (this way you can determine the source of the infection, what it is & what to treat it with successfully). An Infectious Disease doc can be a fantastic help when sites get repeatedly infected- they really are the experts. Also, when they replace your line, are they just putting it back in the same spot or are they rotating sites? Are you on oral or IV antibiotics? Is everyone who touches your line using sterile/aseptic technique? All these things are very important and can be discussed w/ ANY member of your healthcare team. In regards to this, everyone should be on the same page.

I hope you can resolve this issue quickly, as I know it’s not pleasant having lines changed frequently (as I have been in that predicament). It will also take one thing off your mind so you can stay focused on positive things like getting well!

The fatigue…ugh. That is something I deal with daily. But, I just try to pace myself as best I can & not overdo things. I did find that if I overdo things, I could have an exacerbation of my symptoms. In talking w/ others, many say that as well. I read something on Facebook called “The Spoon Theory”. This was a good way to explain how people with fatigue need to tackle chores in steps/spoons. Its cute, if you care to look at it.

In regards to the steroids causing fatigue, I’ve never heard or experienced that myself. In fact, I’ve experienced the opposite. On steroids, I gain weight, get “jittery”, like a kid on a sugar rush who can’t sit still, can’t sleep well (even less than I do on a regular basis), and find I have a bit more energy. So, I’m sorry, I can’t corrolate your fatigue with the steroids.

Pheresis can be tiring in itself. And you are doing it so frequently. Are you going to continue w pheresis, switch to IgG (which is a standard treatment these days for IgG), switching to oral meds, or will you be stopping treatments as you’re regaining strength back(fantastic!!!) :smiley: Do your docs have a long term plan yet?

I can tell you that fatigue is a symptom common to CIDP patients. For me, I found the best thing was a good diet (I saw Nutritionist/Dietitian as certain nutritional issues are seen w CIDP), eating several small meals/day w frequent snacks & down time for a rest if needed. For me, this helps, but everyone has to find what works for them.

Not sure about your leg turning in. Is it neurological from the disease?, musculoskeletal related to weakness, or something else? These are things to be addressed by a physician/PT. I did have a problem where I was dragging my leg somewhat, but this was related to the progression of the CIDP & was more pronounced when I was fatigued or having an exacerbation of the disease.

Im sorry for the long reply, but I wanted to address your questions/issues. I hope my reply gave you some help. If you need anything, don’t hesitate to reach out to me. I wish you the best & continued progress with regaining your mobility, strength & endurance.

Take care!

NiteOwl

:smiley:

20


No “Bunny boots” I’ll have to ask what they are. Once I went to the doctor I was diagnosed within a couple of days. Before that I was getting tired for about 6 months but didn’t think I was sick. Within 2 days of that I could not walk very well, I kept falling down. That was followed by a hospital admission where I got worse fast. I had some use of my arms, no use of my legs, little control of my lips and I couldn’t blink, so considering where I was I am grateful for what I now have back (I can walk, facial muscles are back, arm strength is good, hand strength is weak but slowly improving). The IVIG didn’t work for me so they switched to plasma pheresis and that is working. Thanks for the bunny boots advice. B.


Michaelhay said:

Sounds like you got to a doctor quickly enough to help. My whole situation started a little over 9 years ago. Nobody had a clue what was wrong with me. I had a very good experience with a doctor through Wahsington University/ Barnes Jewish Hospital in St. Louis. I had actually gotten to the point of being basically a quadriplegic before I was diagnosed. I had to learn how to do literally everything all over. Was in rehab therapy, inpatient for several months. Currently I have not taken any meds associated to CIDP for several years now. I still have some residual effects that I have learned to live with, but still am able to walk, play golf, pretty much anything I desire. Not going to get into a running race with anyone though, still don’t have that capability.

Do they have you wearing the “Bunny Boots” in bed? I hated them, but I feel they actually did help out quite a bit with keeping my feet aligned.

If anyone has any questions, I would be very happy to help as much as I can.

Michael

m