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This topic contains 5 replies, has 4 voices, and was last updated by  GAVol 2 years, 1 month ago.

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  • #106178

    Bonnielp
    Member

    Hello! I’m new here, but not new to CIDP. Long story short, I was diagnosed with GBS then CIDP in 1995 at 18 years old. I’m about to “celebrate” my 17 year anniv. On the 29th of this month. I went though the initial spinal taps, EMG’s, IVIG, nerve biopsy, and all of the other horrible tests out there. My only real lasting problems are the numbness in my hands and feet and the fatigue.

    So fast forward to now. I’ve tried to move on and be as normal as possible. I’ve met and married a wonderful man that is very patient and understanding with me and my limitations and now have 2 kids. Our youngest is almost 2 years old. Since her birth I have never recovered. I’ve actually felt worse. I’m more exhausted now than ever. I’ve cut back on work and just about everything but still don’t have the energy to do anything anymore. Several months ago my primary dr. Checked my vitamin D level and it was very low. She gave me a prescription for vit. D but I didn’t notice a difference in how I felt. I finally contacted my Dr. Office the week for a neurologist referral, since I haven’t been seeing one. My reg. dr. is on vacation so I get some other dr. To fill in. He called me and questioned why I wanted the referral. I gave him the background info and the new symptoms I’m having… More exhaustion, more tingling in hands and feet, loosing my balance more, back pain (my 1st symptom when I first got GBS in 95). I told him I’m concerned it’s because of the birth of my daughter. Isn’t pregnancy a cause of a relapse???
    All he was concerned with was the anti-depressant med I’m taking. He wanted to change it or increase it. I told him IM NOT DEPRESSED! It’s not that med i need adjusted. I have the desire to do things I just don’t have the energy. He did order blood work, one of which is a test for STD’s. (WTF?) now I have to wait for my primary dr. To get back. It just leaves me frustrated.

    Is there a relation between low vit D and relapse?
    Pregnancy/delivery and relapse?
    Do you know and good neurologists in the Sacramento/Bay Area that are with Kaiser?

    I know im not going crazy with these new symptoms. They are real. I just never thought I would have to fight for a referral! A referral!!

    #106179

    You mention that you were dx w/gbs then cidp, I did not see mention of regular ivig treatments. Have you been treatment free the whole time? If so, you could have hadgbs and nowthe pregnancy could have brought on another bout of gbs. There was one young woman about five years ago who had cidp and recvd regular treatments but stopped during pregnancy, after the pregnancy she went into remission (she did not get treatments during but after the birth and then stopped) . It seems like you need to get another doc that will at least do another ncv/emg until you can get to a neuro. You don’t have to have a neuro order that (at least we did not, we have bcbs ppo) He referred us to a neuro that did ncv/emg’s. At least with tangible proof that there is an active demylienation, he would have to consider that your symptoms are not depression. Based on your statement of needing a referral, it sounds like you have an hmo. If so, should your symptoms get worse before you get the appointment, you should seriously consider the ER should your symptoms worsen. If you have recurring gbs, things could go south rather quickly without ivig or some other intervention. With a new baby you would probably be better off staying ahead of the situation. If you went to the er, they might even order the ncv/emg or a spinal if you give them your history. Do you have any of your old records to bring them? (old ncv/emg) Good luck and keep us posted. If you go on the archives you can look up a member named Alice, she lives somewhere in the Bay area I think, maybe she can help you with a doctor name. Maybe some one on the site will read this and give you her face book page info.

    #106181

    GH
    Member

    The main indicator of relapse is persistant weakness. If you suspect relapse, you need to have your strength monitored closely by a neurologist.

    If you can see a neurologist in the Bay Area, I recommend Dr. Bowen Wong at Kaiser in Oakland. He was my neurologist until he moved to Kaiser.

    I wouldn’t take (or increase) antidepressants, either. Some doctors like to push them.

    #106183

    Bonnielp
    Member

    I got all of the lab results back that were just drawn last Wed. It was Vit D, B12, thyroid, cholesterol, and the crazy STD, all of which came back within normal limits/negative. The Vit D is the one I was concerned about since it was low before but now within range.

    I have not been on any kind of treatment since moving to California. All of my GBS/CIDP treatments were in Oklahoma. Once I was “stable” I moved to Ca and got married. That was when I tapered off the neurontin and never saw a neurologist since. That has been 10+ years. When I was in Okla, I did have 2 different rounds of IVIG. Is IVIG something that might help the persistent exhaustion? I’m not experiencing weakness like I had during my initial onset. During that time I went from being able to walk to wheelchair bound in a matter of days. This progression of exhaustion has been over the last year. But it’s not getting better. It’s getting worse. I know what to look for and when to go to the ER. I think for so long I chalked a lof of these symptoms up to other things, but now that I’m putting them all together, it makes me wonder if it’s small relapse. It’s more than just me getting older, having 2 kids, etc. I’m also in the process of trying to get ahold of my dr in OK City. If nothing else, she could hopefully help answer questions by phone or email. I do have some of my chart from her office. An EMG result from 97 and a history and Physical with an official diagnosis.

    GH – I’ve been looking online at Kaiser doctors and saw Dr Bowen Wong listed. It’s good to know that you recommend him. It’s worth driving to see a dr that is familiar with GBS/CIDP other than the paragraph in the textbooks. Thank you!!

    #106184

    GH
    Member

    I’m assuming you are with Kaiser. I haven’t had them, but understand there may be difficulties getting to see a specialist out of your immediate area. Dr. Wong definitely has experience with GBS and CIDP, but also important is that he as excellent rapport with patients (at least for me — I didn’t give him any difficulties). I, too, was initially diagnosed as GBS but this was changed to CIDP. Dr. Wong kept an open mind about it until he arrived at the best diagnosis and treatment.

    You don’t want to wait until you need the ER. It seems to me that with your history you ought to be able to get a neuro exam. If Kaiser won’t do that, it doesn’t speak well for them.

    IvIg is a scarce and expensive resource. You are not likely to receive it until you have a more specific diagnosis that calls for it.

    #106255

    GAVol
    Member

    I also had GBS in 85, then CIDP in ’96. Just had annual check up and had low vitamin D levels. Doctor (internist) said muscle weakness can result from low D levels and also gave me an Rx. This is the third time on prescription D so there could be something to it as a contributing factor. You did not mention any of the usual treatments like prednisone, IVIG or plasma exchange. Just curious, but did you have any treatment for your GBS?

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