Sensory CIDP?

“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:
http://emedicine.medscape.com/article/1172965-overview

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:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846285

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.

Jim

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.
billwhit1

Hi
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.

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?

Hey
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
later

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.

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).

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.

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.

GH
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

Hey
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.

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
Bill

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?