MS, and CIDP/GBS
AnonymousJune 9, 2006 at 7:08 pm
Thank You for having me on this Forum. My name is Anita. I’m married with 3 children. I sometimes think that someone up there might have it in for me.
I hope and believe that this forum will teach me about this disease in order for me to deal with ‘actually’ having CIDP/GBS.
I was diagnosed in 1999 with Multiple Sclerosis. My first symptom was Bilateral Optic Neuritis. I was blind in both eyes for 6 months. I was just about to start braile school, but the Doctors decided to give me ‘ungodly’ amounts of steroids and my vision came back to just about normal. Just 3 years later, I could barely see, and it has gotten progressively worse.
My doctors have always said that I had MS and “something else”. They could never tell me what the “something else” was.
But at the end of last year (05′) I had an Extensive Blood Panel, MRI, and Spinal Tap. My Blood Panel was off the charts, especially the CNS portion, and Protein portion.
Now the Dr’s are saying it looks like I have CIDP/GBS. I immediately think to myself, “What the heck is GBS”. I researched it online and was amazed at how much about what I read seemed to mirror my symptoms. But I still have not had anyone to talk to ‘really’ understand CIDP/GBS.
I’m so confused, because I’ve been reading/learning and educating others on Multiple Sclerosis. How do I start all over again, with learning about a ‘completely’ different disease that I have. I don’t think I have the strength. I’m trying to hold on, and just understand.
Will YOU please tell me your stories, symptoms, how you were diagnosed, and most importantly has anyone else had a different diagnosis before finding out it was actually CIDP/GBS, and how did you deal with the realization that you have GBS/CIDP?
I promise I will read every post that is posted to me, but I cannot promise that I will reply to all. I am so fatigued and weak at times, and hope you understand.
I want to thank everyone who posts to me in advance for helping me learn from you.
AnonymousJune 9, 2006 at 8:31 pm
Hi Anita, I am glad you found this forum. It has helped me a lot since I was diagnosed with CIDP almost a year ago. I can imagine how frustrating and scary this must be for you, with a family and three children. There are a number of excellent US websites explaining GBS and CIDP, the home page of this forum is one of them. In addition, there is a good one in the (link deleted by Administrators)
I am 73 years old, a lot older than you I’m sure , with 5 grown children and 14 grandchildren. My neuropathy started 5 years ago in Thailand. For the next five years I was told by different doctors I had peripheral neuropathy and that there was no treatment. That was extremely frustrating for me especially since my symptoms slowly progressed from slight numbness in my feet to a complete loss of all sensation in the feet, balance problems, and now ever increasing numbness in my hands and weakness in my legs. Typing has become a struggle. I have to use two fingers and still keep hitting wrong keys. Most of the time I have to use a rollator to get around without falling. Finally, almost a year ago I was correctly diagnosed with CIDP, actually a variant I don’t want to go into. Supposedly, there were treatments available to me. I received a round of IVIG (infusion of antibodies from donors) last year without much improvement. Earlier this year my neurologist put me on steroids, prednisone. This turned out to be a disaster. I lost control over my legs and had shock-like sensations going up my body to my chest. I quit the steroids and now am back on IVIG. I don’t know what the future brings. There may be some treatment which is not approved for CIDP but which may help for the variant I have. I am fighting to get it.
My case is not typical by any means. CIDP comes in many forms, symptoms and progression. I would suggest you read the many posts from GBS as well as CIDP sufferers. If you have any questions be sure to ask. People on this forum are very helpful.
AnonymousJune 9, 2006 at 10:03 pm
My name is Julie. I’m 39 years old. I too was dignosed with M.S. before they finally changed it to CIDP. My M.R.I. showed no leshions; my nerologist thought it was too early to show. I kept coming in with complaints of weakness, numbness, pain, slurred speech, migraines, vertigo, shakey hands, blurred vision, and the list goes on…One day I woke up and couldn’t walk any longer. I was hospitlaized. My body was beginning to shut down. They told my husband they would have to send me to a convelescent hospital, because they didn’t know what was wrong with me. We finally found a specialist who called the Sacramento Blood bank in to give me plasma pheresis. I had to learn how to walk again among many other painful memories.
I completley understand your exhaustion, as well as your broken heart. Please know you are not alone. There are many of us.
It seems doctors are not very familiar with this disease.
Please take care of yourself and try not to see this condition as permanent. With rest, exercise, treatment (either I.V.I.G., plasma pheresis, auto immune suppressants) you can get a lot stronger. This is a mean illness, but you can beat it. Stay determined. Don’t give up and never think someone upstairs has it in for you. There’s so much we’ll never understand this side of heaven.
Take Care and please feel free to contact me personally if you need to talk.
Your Friend & Fellow CIDP sister;)
AnonymousJune 17, 2006 at 9:16 pm
my name is Vicki in September 2004 I started having tangling in my hands and feet. I went to my Dr. he said I had major depression. while on the medicine he put me on I fell and broke my hip. When that heeled and I kept trying to walk, but I kept falling. Orthopedic surgeon sent me to neurology.after the testing I was told I had CIDP.that WAS in September 2005.the first of October at my first IVIG treatment for five days. I should’ve gone back to my neurologist at the first side of weakness, but I didn’t know. So wasn’t until I couldn’t walk that I went back to see him and was put in the hospital for further testing and more treatments of IVIG. for the next five month I had treatments for five days each month and each time I’ve got little stronger. The last in time the hospital they did an MRI of my head or brain. I was told they found some white spots or 1 and it could mean MS but my doctor still seem to think it’s CIDP and that the spot could just be there from age. but he will keep an eye on it.
I started having double vision a little and that to was checked. The problem is in the muscle and not the cornea. This does seem to be improving. I was told I don’t have to worry about going blind as it isn’t affecting that part of my eye.
this is good place to come and look for answers. Everyone here is so nice. Keep asking questions and remember you’re not alone.
AnonymousJune 22, 2006 at 11:47 pm
Some of CIDP is similar to MS. The damaging places differ. In MS, the demyelinatyion occurs to the CNS, and is diagnosed by the lesions left behind. In CIDP, the demyelination occurs at the peripheral nerves, and is diagnosed that way. Many of the outward symptoms can be similar. CIDP however rarely affects anything autonomic, but MS can.
It is my hope, since more people have MS, that a cure will be found for MS, and those principles and process can be applied to CIDP. Maybe we will get lucky. They are not all that dissimilar.
I was diagnosed in 1999 following a slow, continual progression. Most treatment options have not been successful and my decline had continued. Fortunately for me. the rate of progression is slow. Unfortunately, I have never recovered any of my losses. Once I lose something, it is gone. If I care for myself, keep stress low, don’t OVER-exert, I can keep the progression slow. I normally have experienced losses after difficult times, and after doing too much. I keep my attitude as positive as I can. I grieve my losses and move on. I don’t blame anyone or anything. I feel fortunate that my auto-immune disease isn’t fatal, and I can deal with it.
You can too. Look for a good tomorrow.
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