I suffer chronic demyelinating neuropathy, would like to hear about your experiencie
AnonymousApril 12, 2007 at 12:43 pm
I am new in this forum, I hadn’t found any place where I could talk about my problem until I found this site. I have been reading some other people’s posts and I’ve found out my problem is minimal compared to other’s, but still i have been depressed and a little desperate so i would like to share my story with you and see if you can share a little bit of yours with me. I am mexican so sorry if i make any english mistakes…
Well, for the last nine months i have been feeling strage sentations in my legs, my legs went numb, or i felt sort of bugs walking inside my legs, cramps, burning sensation, tingling, and other weird sensations, none of them painful but terribly irritating and upseting. At the begining i ignored it, i thought it would just get better but it started gettting worse. So I decided to tell my mom about it and we went to a neurologyst. He had me take all kinds of tests, many… After several months he finally found out what the problem was: chronic demyelinating neuropathy, he says it is apparently caused by a vasculitis. It came out in a nerve conduction velocity test. The doctor decided to prescribe corticoids, and i have been taking 60mg a day, i have felt a slight improvement, but a really little one. Fortunately I don’t have any motor disability, but the sensations are terrible, they drive me mad. I am student, currently i have lots of things to study, projects to complete. This problem doesn’t let me concentrate, my personal relationships have also been damaged because i am usually in a bad mood because of this. Sometimes i feel i will never get rid of this sickness. I would like to know if you have any stories to share. Do you know how long it takes for corticoids to take full effect? How do you cope with the symptoms? Is there anything i can do to get better? I don’t want to sound insensitive or melodramatic about my problem, i am aware it is a slight one, but i really need to hear about someone else’s experience. My parents have been understanding with me, but since i don’t have any visible symtoms and i look completely ok, sometimes i think they feel i am exagerating. I don’t talk about this with my friends very often, i don’t want them to think i am baby and i don’t like to complain all the time. So i basically need to share this with people like you, who have been through something similar. Can i expect to get better? T:( hank you
AnonymousApril 12, 2007 at 1:05 pm
Hi Monica Lara, Welcome to the Family. Feel free to ask questions, or just vent, here we know what you are going through because we are going through it ourselves. You have what is know on here as cidp. it is not going to go away for good, but it can get better, and there are some forms that just get worse slowly. steroids are commonly used along with ivig or plasma exchange. there are other meds but i am not the one to bring those up. rest is very important, so please get plenty of rest.
April 12, 2007 at 1:56 pm
My ten year old son also has cidp. We too have the problem with friends and other family members that do not understand because he looks so normal. Kevin too has a mild case compared to most of the other members on the forum. But they are all so nice and helpful and supportive, no one judges anyone here and everyone seems to feel for everyone no matter how mild or severe the symptoms. A nice guy named Jerimy on the forum said something to me yesterday, everyones problems are important! You mentioned that you are depressed and have some pain, I know some people that take cymbalta, it helps with pain and depression. (I do not know the severity of your pain, perhaps you may need something stronger) The biggest obstacle for my son is knowing when to rest and not push himself. I try to make him sleep for 9hrs on school days and as long as he can on the weekends. Good luck, and someone will always listen or help here! I do not know what I would do without this lifeline! Dawn, Kevie’s mom:o
AnonymousApril 12, 2007 at 5:09 pm
I have had CIDP for 3 1/2 years now. I have had a lot of ups and down over the past couple of years because I have the form that relapses. I have been fully paralyzed and even needed a ventilator to breathe. Through numerous different types of treatments we have finally found the right combo of treatments for me ( I get weekly IVIG infusions and take an immunosuppressant called Imuran). I have relearned everything from walking to how to feed myself again, and am doing so great right now that I can walk over a mile at a time without any assistance.
I have had every sensation problem you have mentioned, but over time and through treatments they have gone completely away, so don’t give up hope. I used to take Nuerotin and Lyrica for the abnormal sensations, and it really helped. Rest is also very important and it takes a while to learn your limits. It is hard to live with a chronic condition that makes you appear “normal” to other people because they just don’t understand. When ever you need to vent or have any questions the people here are very supportive, so don’t hesitate.
I wish you well,
AnonymousApril 12, 2007 at 7:32 pm
First of all welcome to our family. Have your Dr.’s talked about having you get IVIG or Plasmapheresis in addition to the steroids?? IVIG is the least invasive of the two. Also does your Neuro have you taking something for your nerve pain?? Neurontin (Gabapentin) or Lyrica (Pregablin) are two of the main ones that seem to work for most people with CIDP/Nerve Pain. Print off some information about CIDP to show your family and friends, in many ways it can be a hidden disease, maybe that will help them understand what you are going through. Keep coming back, your English is perfect 🙂 and it was nice to meet you.
AnonymousApril 13, 2007 at 12:41 am
Welcome to the group. When people can’t see your disabilty it is very hard for them to understand it. Most here have gone through this. My husband lost all but 2 of his friends and I have said they weren’t true friends to begin with. A true friend will never leave you and will understand when you are in pain or to exhausted to do anything but sleep. Even our family members couldn’t understand it and would make stupid comments to us. We had 1 family member who came to see Frank when he first came home from the rehab hospital and all she did was sit and stare at him for hours. After awhile I told her to go home because he needed to sleep without prying eyes. I don’t know what she expected to see.
Don’t hold back what you are feeling physically from family and friends, that’s when they get it their heads that you are fine. You need to let everyone know how tired you are or if you are in pain.
I would like to suggest that your parents read all of the posts here so they know,truly know how GBS/CIDP affects the body and your life in general.
So if you feel the need to vent go right ahead, we will listen and understand.
Wishing you the best.
AnonymousMay 1, 2007 at 4:39 pm
Sorry for the delay in my reply. Thank you all for your comments and sorry to hear about your situations. I sincerely hope each of you finds happiness and serenity despite of the sickness. I have been having big trouble coping with my sickness. I remember my life in the past and sometimes I wish I could stay there foerever. The hardest part for me has been to understand that my life won’t ever be the same, that i will not be able to do all the things i used to do when this sickness had’nt shown up. I see healthy people and i envy them so much, i don’t feel proud about this feeling but it is what i feel.
Jeremy, regarging to my treatment i told the doctor about ivig, he said we should wait for the corticoids to take effect. But when will this happen? I have been taking them for three months and, being objective, i haven’t seen any big improvement. On the contrary, i have gained weight, pimples all over muy face, chest and back and mood changes. As i told you before i only have sensory symptoms, but for the last two weeks i have felt weakness in my knees, i feel insecure while standing or walking on the stais. Yesterday i felt so bad i felt i had to sit down all the time cause if i remained standing i would fall, this made me so nervous and fearful. The doctor told me not to worry cause he checked my reflexes and appearantly there’s nothing wrong but I think this will be getting worse and worse. I am currently taking Lyrica, but i don’t really notice a difference.
Emily thank you for your comments. I am glad you have recovered and i hope your recovery is once complete. To the rest of you guys thank you so much for your comments. Nice to meet you all.
AnonymousMay 1, 2007 at 10:27 pm
Your English is very good!
You don’t mention how old you are, but from reading your posts, I am guessing you are somewhere in the 18 – 23 year range or so. I am a caretaker of a daughter, 22, with cidp.
< quote> The hardest part for me has been to understand that my life won’t ever be the same, that i will not be able to do all the things i used to do when this sickness had’nt shown up. I see healthy people and i envy them so much, i don’t feel proud about this feeling but it is what i feel.
You are handling it very well – this is normal. I watched my daughter go through this process, and I wanted to let you know that you are in the “infancy” stage of your experiences w/cidp. The illness may get better, or it may get worse and then get better. For a very few, it slowly progresses without improvement. There is no way to predict the time, or outcome of this illness, because each person is different. One thing that helped a great deal with my daughter, was that she had a couple friends that stuck by her side throughout. Please keep the lines of communication open with those friends and family members that care about you. Continue to let them know when you have difficulties – don’t hide it from them. They will do everything they can to help you because they love you. I had to force my daughter to go with me on family get togethers – at first she wanted to stay in her room and not participate. After a while, she began to learn to have fun again and stay “connected” with her friends – They carted her to the lake in her wheelchair, the mall, and even to a work Christmas party (the work she was fired from because she was not able to perform her duties). Everyone was happy to see her, even if she could not work. Thing will get better – but it will take lots of time and patience with yourself. We are about a year and a half out, and my daughter has made huge progress – she no longer is wheelchair dependent, and is looking forward to going back to school in the fall. She still does not work, but life has improved tremendously. It will for you too, in time.
Have you discussed your continuing weakness with your doctor recently? This may be an indication that things are not responding to the corticoids. If possible, try to find another doctor in your area that has treated someone w/cidp for a second opinion about ivig. I know this is easier said than done, but it can give you strength and may slow down the progress. The first time, a “loading dose” (2 – 5 days) is given, then, if needed, a regular schedule of “booster” doses is given (for example once a month, once every 2 weeks, whatever seems to work for you) Some others here may offer advice concerning reflexes – I only know that my daughter has never had a return of any. Our doctor told us that he looks for problems with the reflexes if they were asymetrical, otherwise it was not something to worry about.
Try to get lots & lots of rest!
May 2, 2007 at 7:34 am
Welcome! I know it’s hard not to be able to do all the things you want to. I’ve learned to redirect what energy I have to what I can do. New hobbies like reading and gardening. I’ve also learned if I need help with something I ask for it. It’s a big change but focus on the friends who have stuck by you and the things in life you can do. The greatest thing I’ve found is this site for it helps to know you’re not alone and to have someone who can offer in-put to the questions you have. It’s a rocky road but we’re all in this together. Keep asking question and don’t hesitate to take anything you’ve learned from this site to your doctor. Alot of the doctors don’t know excactly what they are dealing with so being informed yourself helps. Good luck and keep your chin up!
AnonymousMay 2, 2007 at 10:43 am
Buenos Dias from Tennessee. I am a 78 year old male that has had CIDP for 10 years. I, like you see people running, doing all of the things I used to be able to do, and it makes me invious. I am an avid fisherman, and have been to Mexico 54 times; fishing most of the big lakes there. Not being able to travel; I am content to fish out of a specially outfitted boat that doesn’t require much physical effort. I was diagnosed with CIDP at Mayo Clinic 10 years ago. I had IVIG 5 years ago, and just completed plasma exchange to no avail. Some people on this site have had miraculous improvement from these treatments. Others like me got no improvement whatsoever. You will find that what works for some will do absolutely nothing for others. Try to find a good neuro that will try other options until you can find something that works. Being young, I feel you will respond faster than an older person like me. Keep us informed of your progress. Where are you located?
AnonymousMay 2, 2007 at 12:15 pm
The only treatment that cleared up my CIDP was the three-step treatment
1. start on prednisone (it was 60mg for me also)
2. 4-5 courses of plasma exchange
3. 5 IV-IG treatments
After that I began to improve, and the doctor slowly tapered me down on the steroids until I was on 10 mg every other day. I’ve had a few relapses since I was first diagnosed in 1995, but was able to recover pretty well.
One of the things that I’ve found that helped me with the pain and tingling was vitamin B 100 complex. Check with your doctor if it’s OK for you to take that.
I know about the moodiness and anger–and the steroids make that worse. It’s a hard illness to deal with. But there is a good chance that you’ll have a complete recovery, so focus on that.
Good luck, and your english is great.
AnonymousMay 3, 2007 at 2:42 pm
Here is a website to explore: [url]http://www.myida.org/[/url]
It’s called The Invisible Disabilities Advocate, and they have some articles, etc that might help you and family and friends understand what it’s like to live with what is essentially an “invisible” disease.
I struggle with not wanting to go out looking like hell, but then if I can polish myself up enough to pass muster, and people tell me “you look good!”– it doesn’t make me feel good (although I’ll smile and pretend– while rolling my eyes to myself.) I feel like if I tell the truth (that I feel like crap!), that I’m not being “nice.” It also makes me feel bad, and others feel uncomfortable. People like nice endings, and pretty things. This illness provides neither, and there are few REALLY true friends– even fewer that will stick around for the frustrating permanent nature of this journey.
Hang in there, and welcome– you’ve found the right place!
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