experience with cidp

Well, my mother suffers from CIDP so I can help you. I will tell you one thing. It is pretty difficult to diagnose this condition and various methods are used. CIDP is a neurological disorder and it affects greatly sensory function in the legs and arms. It is common in young adults but it can happen in any age. Doctors tend to prescribe Prednisone as a treatment. Plasma exchange and intravenous immunoglobulin therapy can be effective. But some patients don’t even respond on this therapy. That is about it because this illness is still in research phase. At least that is what I heard.

Here is some more info :

Quote:

CIDP is defined thus:
• 'chronic' refers to the gradual course of the illness;
• 'inflammatory' means there is strong evidence that it is inflammation that causes the nerve
damage;
• 'demyelinating' means that the damage is primarily to the insulating myelin sheaths around
the nerve fibres; and
• 'poly[radiculo]neuropathy'; 'poly' means many, ['radiculo' means root,] 'neuro' means nerve
*'Radiculo' is sometimes omitted.
and 'opathy' means disease; so poly[radiculo]neuro-pathy means a disease of many peripheral
nerves [and their roots (which are the points of origin of the peripheral nerves from the
spinal cord)].......

........Over the last few years the understanding of CIDP has increased and it is now believed that CIDP
is the name given to a chronic disease of the peripheral nerves that reflects a number of different
ways in which nerves can be damaged. Probably the most common is a disorder in which the
immune system attacks the outer insulating nerve layer leading to weakness and altered sensation
that comes on rather slowly often over a few months. Weakness is usually the most prominent
complaint and can be so severe as to confine patients to a chair or bed.

...............A diagnosis of CIDP requires the following:
• Weakness of at least two limbs;
• Complete or partial loss of tendon reflexes;
• Progression over eight weeks or relapses;
• Evidence of myelin damage in the peripheral nerves from nerve conduction studies.

......You and your family and friends
A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a
strain on family and other relationships. You may find it difficult to accept help when you need
it, or your family and friends may feel that they cannot give help or become overprotective
toward you. It is difficult to carry on family life as if nothing has happened. Everyone concerned
may have to take on new roles. If you and your family and friends are able to speak openly and
honestly with each other you will probably find that you are able to help each other through
difficult times with the result that the bonds are strengthened.

**edited by moderator ** web addresses not allowed **

Hello, I am a 41 yr old female. I have CIDP, was diagnosed 6 yrs ago this August. This illness affects the nerves and muscles. The lining of the nerves are basically being eaten away exposing the nerves and weakening the nerves and muscles. All of this can and does causes people to fall a lot, throws the balance and coordination off, in some cases tremors (my case), tingling, pain and burning under the skin, legs, feet, hands, and sometimes face. You lose sensation (numbness) in limbs. CIDP is hard to diagnose because there is known test to show it, and not many doctors have heard of it. I have been in prednisone and other meds for the tremors and pain as well as IVIG treatments 3 days each month. This works but not for long. I am presently using a quad cane to walk, just received word from doctor that my condition is slowly declining and just ordered me an electric scooter because with my hands I can't use a regular wheelchair. The scooter is for long distance walking, body can't do it any more. Doc also says soon I am going to have to stop working. I hope this helps you understand the tole that this disease takes on a body.

Hi, my daughters father (Jay) has CIDP. He was originally diagnosed with GBS five years ago when he collapsed and could not walk or use his legs. He was later diagnosed with CIDP and has regular IVIG treatment. He is extremely fortunate in that now he can walk, play drums (his passion) and function fairly normally (physically). I really wanted to chat to any others with CIDP or to those caring for to form an understanding of the psychological effects of CIDP. Jay often uses CIDP as a reason for being easy to anger, for 'anxiety attacks' and as reason to not wanting to discuss personal problems when they arise. I am trying to be sympathetic and understanding but I cant help getting frustrated at times when he blows up at me with little provacation. Prior to being diagnosed with GBS he was the same but now falls back on CIDP as an excuse. I just really wanted to hear from others and ask about their emotional and psychological side effects. Ive scoured the internet and have found plenty of info on the physical and medical side but little to none on the emotional and personal side. Any understanding you could help me with would be so appreciated....despairing

Hi,
My name is kelly and I was diagnosed with cidp about 3 years ago after being told I has ms,arthritis,fibromyalga,chrons,lime disease. and here is the best one, "patients needs pchyological help due to pain med dependance and hypochondria". After alot of dr appointments, I hace cidp.
It all started with severe neck pain and nnumbness in both hands. they said it was carpel tunnel so of course, I had surgury for both. Not even close to fixing the.

Anyway, today I take cellcept, cymbalta, gabasomething,wellbutrin, kadian. and roxicodone for bad days. I did steroids, no good, then a year of ivigs in hospitol. That worked at first and i needed treatments more often, Then last year I developed chemical menegitis from ivig treatment. That happens to many so I can no longer do them. I now go 5 days in hospitol like ivigs but now i do plasma phoresis. I seems to be fab right after, about 1 month later, i am losing effects. but not so much that I am back in bed. I am a mom of 2 just recently divorced.I have lost dexterity in hands, have lots of pain and very heavy legs. I fall down on a regular basis so i am moving to a one floor place so no more steps. Whatelse? So much that I will wait for any one to reply and ask.Fair enough???Kelly

I am 20- and I have CIDP! First all I can say is never leave your friends side when he/she can't do fun stuff anymore....mine all did. And it really stinks to have to be home with your mom on Friday nights....or NYE....(or think of the most fun day you can imagine!) CIDP has taken my legs away from me-- it started the summer of my senior year of HS-- after I graduated. I would just have random little twitches in my toes- no more! I should have paid attention-- because now about three years later I can barely walk. It didn't help I was misdiagnosed with the pain being a symptom of panic attacks and then restless leg.... CIDP is many things- pain, weakness, and loss of sensation are top on the list. Pain symptoms can be different for everyone-- mine feels like I'm getting tazered on my feet-- the pain shoots down my leg like lightning and explodes in my feet- and most of the time I have to yelp out in pain and surprise because it's to much to keep in. Also I have pain that feels like my legs are covered in ice-- they are warm to the touch but i feel them as freezing cold(I've even invested in hunting pants/socks to try to keep warm....doesn't work like that) that pain is more constant and ice like- it crackles and aches. Really pain symptoms can be anywhere! But one thing is for sure-- it's so painful you friend will be tired, clearly fatigued, they won't like cold anymore because it really ticks off the CIDP. They may change temperaments... I did-- stuff gets old quick when your in pain. There are a few treatments-- I receive IVIG treatments- but that's not the only treatment! IVIG is short for intravenous immunoglobulin- the IVIG helps try to repair the meylen around your nerve--I think of meylen like the casing on a bratwurst lol- if you don't have meylen around your nerves they shoot pain signals- which is the lightning pain I have. People also have plasmapheresis treatments- and long term use of cortical steroids like prednisone--- which is my least favorite because prednisone causes SO SO SO SO many problems long term--- everything from sweating all the time to bone decay... Seriously-- it's terrible. There are also some experimental things going on but I would bank on them because who knows in a situation like that... I'm really struggling with it because it hurts so bad- and none of my friends understand this level of intense pain... Also pretty much all of my friends stopped talking to me because I can club much and I prefer to just stay home and keep warm.... I really think you are a good friend for sticking by your friend like you are!!! CIDP won't be easy for them-- all I would say is that person is still the same-- but they have so much on their plate with this disease!! I don't know how old your friend is but I have been desperately looking for another young person to just be a pen pal with and provide support for each other-- if your friend would be interested in talking to a 20 year old let me know!!!

Hi Jessica, I was drawn to your post because your symptoms the shooting pain being cold and exhausted are all the things I went through. I'm writing you to offer my support and share my experiences with you.I have had cidp for 8 yrs. It took 22 months to get the right disgnosis because someone read my spinal fluid test improperly. When I started Ivig I was ready to kill myself the pain was all over my body like I was being stung by bees,walking on glass and tazzered I had 5 days og Ivig and had fasiculations everywhere. It took 2 years of Ivig every 2 weeks to finally start to feel better and not be in pain all the time.gabepentin helps with the parethesias and I'm feeling much better. I now get ivig every 3 wks. and I have more good day than bad. Hang in there you are not alone. Wishing you the best Chuck

Jessica please join CIDP and GBS support. You will meet others and can text. I am 4 months to disease and you will make friends. I am meeting ppl my age. Best of luck. This disease sucks at 55, cannot imagine being young with it.

I have CIDP. It is insidious. And yes, I get accused of using it as an excuse. It is not an excuse. It is a reality that occurs. You try to be normal but when you hurt and are weak 20 hours a day, you reach a point once a week or so that you lash out. Unfortunately, it's usually the one closest to you. The one you love the most. I know, my wife is threatening to leave me because of it. After 33 years.

Hi...
My boyfriend of 30 years was diagnosed with CIDP 5 years ago and i find he has become very impatient and defensive. I can't talk about money or any other subjects that we normally used to talk about. I even chose to live in seperate living quarters because of the changes in our relationship. Discussing personal problems is impossible.
He had one big crisis and was in a wheelchair for almost 2 months, he rebounded with intensive IVG gamma globuline treatments. He also has pretty severe tremours in the hands, but can walk fine for the moment. He has ups and downs, which can last for months at a time. Sometimes he gets weak legs and walks very slowly. He says his legs feel like he was wearing heavy steel toe boots.
I just find that it has taken a big tole on him, on his personality and on our couple. He is so different from the patient, energetic man he was only a few years ago. I worry about how the illness will progress.