October 28, 2015 at 11:47 am
I have been DXd with sensory CIDP. I have been in a wheelchair for nearly a yesr….it took me that long to get diagnosed. I have had the loading dose if IVIG and three additional treatments. My neurologist says I am doing much better but I don’t feel like it.
Dose anybody know anything about sensory CIDP and what treatments work best for it?
October 28, 2015 at 3:13 pm
“Sensory” CIDP refers to the symptoms associated with the syndrome. In other words, tingling and numbness of hands and feet are sensory symptoms of Peripheral Neuropathies (PN) like CIDP.
The treatments for PN vary by exact condition and the individual’s tolerance to the treatments. IVIg is considered the top treatment for most patients. Plasma Exchange (PE) is another top treatment. IVIg stops the immune system from producing more cells that attack self. PE removes the attacking cells. Some, like me, believe the best treatment is 2-4 days of PE then switching to IVIg.
CIDP attacks Myelin, the insulation surrounding the nerves. It can also, if left unchecked for long periods of time, attack the Axons themselves. The body can repair some Myelin damage, but it is very slow and can take years. It is much more difficult for the body to repair Axonal damage.
There are some newer treatments (Rituxan, Stem Cell Transplant, etc) that are providing hope for some of us.
Here is a good article about CIDP from one of the leading researchers and authorities, Dr Richard Lewis:
October 29, 2015 at 11:39 am
WOW thanks a lot. Very good article.
I was given high doses of prednisone for 5 months when I was in the hospital, and I went seriously downhill fast. Since then I have found articles on nih.gov that say steroids cause sensory CIDP to deteriorate. I’m now only on IVIG.
What’s the difference between Myelin and Axons? This stuff us all greek to me.
I am being followed by the best teaching hospital in the state, so I feel I’m in good hands. At my last check-up they said I had improvement in strength, but no change in sensory. At my next check (every 3 month) I am scheduled to have a skin biopsy done. What is this for, do you know?
So, is there any hope for repairing for some of the damage? My God, I I was riding motorcycles and 7 huge horses a day, and now I’m in a wheelchair. I can’t believe this!
How are you doing? Do you have your story on the forum someplace?
October 29, 2015 at 5:00 pm
Lee, I was a semi-professional tennis player, surfed, and rode motorcycles too. This disease paralyzed me and I was a quadriplegic in 10 days. Being in good shape didn’t do anything for me, the disease isn’t impeded by our condition, good or bad.
Myelin can grow back to some extent at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment. Axonal damage is another thing and you can read about it here:
I’m still wheelchair bound after 8 years. My recent Rituxan treatments have resulted in some recent improvements and I’m hopeful this will continue. I’m even contemplating renting a Trike to take on the road for a little cruise. Maybe in 2016.
I’m now riding an Invacare TDX-SP/CG, a far cry from what I was riding! I hope your strength continues to build so you can ditch the wheelchair.
October 30, 2015 at 11:13 am
Thanks, Jim, I hope you can improve too. This disease IS rather dramatic, isn’t it? I have a theory what happened to me, but nobody believes it.
Can you walk on a walker at all? What is your current PT? When I got released from hospital, I got 3 visits from PT and then my ins said, “OK,you’re done!” So much for health care in the US, huh?
December 1, 2015 at 9:00 pm
Response to theBudwiziferr. Pt shows you how to do it the rest is up to you. From my wc I drug up the weights and threabands. You can, no drive no thrive. Ask a PT they’ll tell you show you and evaluate you. Even if they are crappy don’t let that get in your way.
December 4, 2015 at 11:34 am
Thanks Bullwhit. Have you been able to make any progress? I just feel so stuck I feel like giving up.
December 4, 2015 at 5:41 pm
Billwhit1 please I’m no bull 🙂 I reread your note 8 years is a long time. Rather then a trike work on a pedal bike. Exercise every way you can. Don’t pick up anything unless it challenges you physically. So much for that i’m pissed off just now.
December 5, 2015 at 11:07 am
BILLwhit….sorry. No, that’s not me that’s been in a wheelchair for 8 years….that’s Jim-LA. His profile says he is making progress so I guess all is not lost.
Are you recommending an exercise bike? I had access to one when I was in the hospital, but now I am homr I can’t do much of anything.
??Why are you pissed ff? Anything you’d care to share?
December 5, 2015 at 11:40 am
BILLwhit1……more questions. I just did a search on exercise bikes. Any pointers on how to pick one out for a tiny apartment? I have a spare bedroom I could turn into an exercise room but nervous about ordering anything and then finding oyut it won’t work for me.
December 5, 2015 at 12:49 pm
By all means yes ,exercise bike. PT would be the best advice as that’s their field, not sales but appropriateness of the style of a bike. My best guess and its a guess is to beg borrow or steal a very light one with no extras. Extras like TV, fan, counters, timers bells whistles. They can get very expensive. Go very slow, if its not a good day don’t do it but set a goal. Even the floor peddler, not one you sit on. You can stay in a wheel chair and do it. I’ve also got osteo a, a very bad set of disc/bones. Just laying on the floor and drawing my leg towards my chest cause me to weep. I set small goals and took my pain pills. After 10 years or so I can touch my toes without pain pills, but slowly in all measures. Keep driving (slowly) but make progress. Also think about other stuff, not why you can’t do.
PO’ed yep CIDP for the 10th time since 1985. What, once every 2 years ? Naw my last break was 2000 to 2015, thought I had beat it. Then the first of this year and again DR diagnosed last week. IVIG again next week. Probably the only reason I’m mobile is that I refused to back down and let it “Heal”on its own. Take an active part in this crap refuse to say I just can’t. Are you EC or WC?
December 5, 2015 at 1:47 pm
Hey Bill! Thanks for tthe speedy reply. (A large part of my problem is I’m all alone, stuck in a tiny apt. I’m so lonesome I could frikkiN’ SCREAM!) I’m in the boondocks of western NY and when I got DX’d my primary DR said “what is that? I’ve never heard of it.” and then proceeded to give my the you have no hope lecture.
What is EC and WC? I’m wortking as hard as I can all by myself and do a little yoga (I used to teach yoga and train horses….HAH!) And your advice to think about other stuff is spot on. This is such an ‘in your face’ disease but you make it worse by concentrating on it. I have a smart tv in my bedroom and I watch a lot of positive stuff and then go to sleep w/Willie Nelson.
Does your pain get worse at night?
My neurologist said set small goals, but like what? What types of goals are you working on?
December 16, 2015 at 10:50 pm
I’m still here. My CIDP is on the rise again. I’ll try to get back to you later. My second first IVIG was Tuesday and it did not go so well this time. I’ll get easier as I get more. Take care
December 20, 2015 at 12:09 pm
I was wondering how you were doing. My CIDP is on the rise also. Plus, I think I’ve got the flu. I’ll add you to my prayer beads. Let me know how you are doing.
December 20, 2015 at 3:01 pm
Yea I go for the second second for this year. My GBS(CIDP) has never come above my waist except the eye and BP control in the nerve bundle. So I guess i’m lucky but this is the tenth time it has struck me in 31 years. I met some one earlier this year who has not had it as long as I have but all of his muscles have atrophied a lot. Example my biceps is still almost 14 in (ah)but there is no loose meat there at all. Other muscles are about the same as before this stuff. I maybe have lost 5% but I’m also 73 years old. My height has decreased by about 1 1/2 in was 6-4 now 62 1/2″. So Im thankful but the repeated loosing of feet, leg ability to move around is getting old. There are other things like nerves firing at random,lose of balance, inconsistent eye control (seeing double). Loss of reflects below my waist. I’m on a roller-coaster with the BP, 2 stroke also in the last 5 years. I recover some what and now that we have IvIg I don’t have the dreaded Hospital infections from PP or the aggressiveness that Prednisone causes.I’m running on but I think exercise between the boughts have helped me recover each time. Another but, cancer survivor, falls broken bones,and my brains full up slow down it seems like it will get me.
December 21, 2015 at 1:12 pm
Are you able to walk? I’m in a wheelchair and that is getting old. Plus I’m just getting over the flu and I’ve lost all the little gains that I had made. Just came from the doctor and shee said it will take me several weeks to get my strength back.
Do you live alone? I do, and that makes it hard. I have to pay for in-home help and I am out of money.
Funny, I am 73, too.
December 21, 2015 at 5:50 pm
Yea I’m still wobbling (walking). The other day I had my walking stick on the top of my foot and did not know it until I sensed something weird and looked down. Fortunately I am not alone. I married a lot better then she did. The light of my life is also a retired RN. She can help me deal with Dr other then the Neuro. The other Dr’s just don’t believe you when you tell them something. What I get is oh we’ll run xx test(s) so we can rule out this and that. We say Guys that is not the problem just provide the meds I need as I needed before this specific bout. Sometimes I feel like all Dr do is treat the best they can with the most the can. If you are outside the norm they are become remote and want to test, test without a reasonable reason the then “rule this out”.
I know about that out of $ stuff. Last year I went through the procedure to get my Mom on State Medicaid. I had to prove she was out of money and show them a lot of bills. She owed over $20,000.00 by that time. It is especially difficult when you are managing her remaining $ with out the courts involvement. It became a matter of who the heck are you saying she is broke or qualified. I had a lot of paper work to find, understand, prepare, meet dead lines,validate and a legal Trust to write. One of the last things I had to do was talk to the States advocate for indigent persons. She acted like I was not the person doing this as I did not have the proper pettigree (sp).
December 24, 2015 at 2:38 pm
How does the IVIG help you? I don’t feel like mine is doing anything. If IVIG doesn’t work, are there other things they can try>
December 24, 2015 at 3:18 pm
IvIg does not work equally well for everyone. I was started on IvIg, but it didn’t do much for me, so I was given plasma exchange. I never had IvIg again. Every case is different, but earlier treatment generally leads to better recovery. Your late diagnosis may have lessened your chances for a good recovery.
December 24, 2015 at 3:41 pm
Yes there are other things but … One is plasma pharesis which removes most of the attack cells and it has always worked for me. The problem with it is the connection which is deemed invasive. Since I have had about 8 boughs when only PP was being use I ran out of connection places. I also had two serious infections which were hard to clear up. I had 4 in my chest, scar tissue stopped that,2 in my inner thighs that I can remember and was not sedated. My Neuro also tried Prednisone 2 or 3 times and it cause me to attack everything, loved ones, relatives friends and any one else that came near. I’m real grateful for IVIG. Now what does IVIG do? This site has the information look around you’ll find it. Not doing any good you say? Look if you are as old as me nothing repairs is self as quick as it did when you were 21. If your Immune system was allowed to keep destroying myelin and or nerve cells for a long time it will take longer to repair. On my 2nd bought I lost my knee reflexes. This happens each time and in-between boughts they slowly regrow,and return. I cannot tell you how fast even a Doc can’t. Its you and the grace of God. So unless you really put forth eating well and pushing yourself to not let muscles atrophy you are not going to be 21 (or 60) again ever.
December 24, 2015 at 3:55 pm
You are lucky that you have not had many repeat occurrences. I was having a special DR a Vascular Surgeon insert the connection and it still got infected. So beware! If PP was 90% ok Insurance and Medicare would not have allowed a $25,000 each procedure for 8 or more. It’s $$$ to do IVIG and health threat to do PP
December 28, 2015 at 11:24 am
Now I’m confused. Are you saying IVIG may be helping me even though I don’t feel any better?
December 28, 2015 at 9:25 pm
Well you have read this sites explanation of what CIDP does to your myelin and possible to your axons, right? The prognosis is fairly good if you are treated early and are young. Diametric of both those, does not have a reasonable prognosis unless…. You eat well, take real good care of the remaining muscles. If they are allowed to atrophy its not good. Normally your body will regrow the mylin and axons(?), it takes time. IF Your legs, arms show atrophy probably the other muscles are not so good also. You must exercise and try to get the muscles to at least be improving. If you don’t its down hill all the way. Then yes you will not feel like IVIG is helping. You’ve got to help yourself. I’m no Doctor or even a neophyte first aider but as an Engineer I know that if you don’t maintain the supports of your (what ever) it will not continue to preform as designed. My remaining years probably will not give me time to regrow all I’ve lost ,but I will be pushing my self to recover all the way.
December 29, 2015 at 1:28 pm
What kind of stuff do you eat? What would be a good diet? I’d be willing to eat cat shit if it would help.
December 29, 2015 at 4:55 pm
You know I’ve been answering in earnest and responding to your questions but this question is so basic I wonder if you were even able to get on the banana truck. No offense intended but ask your Doctor or a nurse who has dietary experience. I eat what ever my wife feeds me even when she is on a diet. I eat out maybe three times a week 2 at fast food and one real nice restaurant. Other wise its veggies and beef,PORK, fowl, cereals,milk, sweets, BOOZE once in a while, so get a diet from one of the two I mentioned.
IF you are in a wheel chair it will take years of work to get moving again and if you are 73, like your Dr said ???
You told me he said “its all over”. What did you say …ok
December 30, 2015 at 12:46 pm
When I was at Strong (the best teaching hospital in the state) who is managing my care, they said “Eat anything you want.” Then there is Craig No-egg on youtube who is screaming that going vegan is the only way to go.
That was my local neurologist that made that comment. I have another IVIG treatment scheduled and then go back to Strong for another evaluation. Then we’ll see
I have a reduced limit on food, since I had a full esophectomy/gastronomy and that limits a lot of what I can eat.
Sorry if my questions have irritated you. I’m just so alone here…..it’s nice to have someone to talk with.
BTW….I have had several Nutritional consultants. The had me on Ensure, which is most sugar which I can’t eat.
December 30, 2015 at 5:31 pm
Maybe I was a little impatient as at 73 my recovery time will be short and any one else at that age. Knowing how to eat came to me many many years ago. My size and hyper activity requires that I eat a lot. I have several times gained to much weight by eating 6 or more glazed donuts a day. Even at that I ran at least 5 miles 4 times a week and then played Tennis at night or other competitive activities. Waters over the dam. Now is now and I feel that my food intake and exercise are paramount to getting at least 5 more years. Hmm me at 78 never happen but I am square with my maker. I hope you get sound not radical or innovative diet support. Ask a RN (Registered nurse) She will lay it out for you or tell you about a diabetic Ensure…Glycerna (SP). It has much less sugar and might help. Hey ask an RN. Dr’s don’t have the time and others with magic solutions should be avoided. Are your Nutritional consultants aware of your stomach reactions to Ensure?
December 31, 2015 at 3:54 pm
I looked up the ingredients of the Glucerna and it has milk products in it. Like you, I almost bought the farm when cancer ravaged my esophogus and stomach. I lost both and was on a tube feed for a year. w/7 months of that on life support. The doctors took part of my colon and re-fashioned a fake esophagus so I can now eat, but I develeoped a milk allergy with all this.
Getting enough calories is hard. I weigh 102 (my highest weight when I was riding was 116). 5 miles? Ha ha…got you beat. I used to run 14 miles eeeevery weekend. Plus riding 7 big horses every night after work.
All the people in my family have lived past 100, so I figure I’ve got 30 years to work on this. Might as well have a project; I retired years ago and have not much to do w/my time.
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