thanks for the warm welcome guys. So, all this is new to me. I suffer from issues with my spinal fluid pressure too and other undiagnosed. In the last 3 years I have had, pericarditis with pleural effusion, dysautonomia, encephalitis, high intracranial pressure and so many other things. When my cardiologist mentioned this illness, I thought he was crazy, clearly the muscle atrophy, weakness and muscle twitching were due to 3 years of bedrest. Well he referrred me to a neuro who specializes in this and he ordered lots of bloodwork. My igm levels are very high and ganglioside antibodies. I was very healhy and then i had breat implanst put in and well here i am, something set off my immune system. Is there any one else with residual thymus left over?
Are these symptoms attributed to CIDP? Or another disorder? Thanks for sharing and I'm sure you will get some support from folks on this site.
Hi Lori, honeslty I am not sure. Initially, it was thought that i had arnold chiari malformaton and my new neurologist said he doesnt think I had encephaltiis, but an immune attack of the central nervous system. My muscle weakness before I became homebound 3 years ago, was already there, I could not figure out why 3 hrs into my day, i was completley wiped out already. So i am sure this was already present and i just didnt notice.
I understand. I hadn't heard of some of these symptoms with CIDP, but we know how much is changing on a daily basis. Perhaps several issues are involved. I will pray that you get every answer you need and wise counsel in the process!
lori, would you mind sharing your sysmptoms with me. I dont know anyone else with this illness, although i suspect my mom has suffered for years. Right now my trunk and legs are extremly weak. My legs feel like cynder blocks.
I think symptoms vary greatly. When I was first diagnosed, many years ago, my symptoms were what was commonly written; muscle weakness, numbness, sometimes painful shooting down legs into feet, hands. So many things I reported, neurolgists had not seen presented back then. I kept telling doctors that my "gait" was widened, my legs ached so badly, my legs would just give out at weird times. They said those weren't the norm. Now, those things Are the NORM. I sure could have used some confirmation back then. I'm sure many of us were treated as though we were imagining things, but folks have so much more support now. I had brain fogginess and would not be able to use a correct word, even though I knew the word well, like if I needed to say "repetition" in a conversation, I might say, "reparations", being an English teacher, I clearly knew the correct word and thought I was saying it...only to be mortified that some other word came out of my mouth. That can still happen to me if I get too tired, or I am in a tough episode. Now, I read many people with CIDP have some of this happening, which I find very validating. It is painful when family or colleagues do not "get it" and think, you are just being dramatic, or even lazy, when you can't get out of bed, or that you must be losin it. My kids had always seen me active, as I had owned a ballet studio and was a dancer since their youth. My neurologist even explained long ago that my illness was real, but almost nothing was written that was enlightened, comprehensive, so I was pretty much on my own. Nobody was excited about reading through Peter Dyck's book on NEUROLOGY, ha! But that is about all I had, and I love scholarly books. I pray that you are given some solid literature from your neurologist, but if not, the web has some good stuff. You have to do some research, and talk to others for some help. Of course, to be fair, I was also diagnosed with CFS and Fibromyalgia at the same time, and I think doctors didn't know which symptom came from what! ha. Do they know the difference now? I doubt it, maybe nobody knows. I am 61 now, and I am just grateful for any kindness I receive from people who recognize this disorder as valid and serious. Long time comin', ya'll!
Lori thank you for writing your story to us. I have no excuses I am just bad speller, I can't use anythign I have wrong with me over that. I have a learning disability that I got tested for years ago now...I didn't know in high school until I got out of it I had this learning disability.
But enough of that.....I have several symtoms that has my doctors not understanding....something like you wrote about. I gotten so depressed over not knowing what is wrong...and them now trying to put it on my mental state. I am sorry I love life and I love to be active...and I hate to have these problems...it isn't me. I have my husband who thinks I have had some bad doctors. He is probably right. they never talk to me or explain...even my husband trys to talk to them...I don't get a word or the speicalist will say go back to your family doctor. Well lots of luck there he never reads these reports as I can tell so far not as long as the 15 years I have seen him. So lately we try to change to antoher group. I haven't given them much of a chance yet to see if they are any better. They seem nice so did my family doctor. But how do you get thru all these things that are going on wth you and still hold together and keep on going. I don't know any more what is wrong with my body....I have so many things going wrong.....
It is easier to give up. I am still here hanging on....but it isn't in my mind....they are real.
Just yesterday another new simtom show up I had it maybe once or twice before....I become so weak that I can hardly move...My breathing is effected and my body doesn't work....I have it so hard just to walk. I want to fall over....my head doesn't want to stay up. It is weakness!!!! It finally by afternoon left most of my body but stay in my arms hands and chest or body part yet my legs came back...but I sat all most of the day...not sure if it was sitting or not.....I try to walk it was very hard to walk it was like cement legs...I was having balance problems...my husband grab me...help me into the house...OH yeah I road in his truck all day so I wouldn't be alone by myself....I only got out of truck went sideways once to use a bathroom. Until I got home....that is when I had problems....yet the weakness was mostly gone I thought the one that makes you feel like you can't control nothing. except in my arms and hands...but maybe I just couldn't feel my legs.
My legs swell up everyday...espiecally the left one...when I was in the ER two weeks ago they said my right leg was swollen up....my heart started to give them problems....I had dieahea since thrus before Easter still...it is now just very soft...I for the first time was ask to give sample of it yesterday. I pee a lot...sick almost throw up a lot...I have NO gall badder or anpex and my pain is in my left side...they have done a CT scan enlighten two weeks ago....I still am not better today....trying to stay on the clear liquid diet but too many personal problems at home to keep on it...since my husband is havning to help me a lot.
I am now not afaird to tell people help. please