Hi Sandy,

Please know you are not alone. I was diagnosed with GBS 8 months ago, although I now think (again) it may be CIDP. Confirmed yesterday by an audiologist that I have a damaged nerve in my right ear, it’s been ringing for a few days. At least you have your husband… as I was going through GBS my husband thought I was making up all of my symptoms (even though I had confirmed NCS showing demyelination, reports from my neurologist stating GBS or CIDP and visible symptoms) and decided to yell at me every night, have an affair and leave me with our two young children. I’m 39 and often wonder what the future holds. Also in the process of selling our house bc we can’t afford it and trying to move. I worry about being able to hold a job down, get insurance and raise a 5 and 7 year old. No family close either. It is isolating – I have a neighborhood friend that always asks me to go for a walk, thinking I just need to get active to feel better. No one understands. I have a neurologist appointment tomorrow to address the ear ringing, but I have low hopes this guy will do anything. I had my PCP submit a referral to the U of Virginia and they said they would not accept me. Not sure if it’s because they thought I had GBS based on my doctor’s notes or what, but they lady I spoke with said that they cannot help me. So here I am, no one at all to help. Not even a Center of Excellence will help me. I’m thankful for this forum and everyone who helps (Jim!) and wish everyone the best! We all understand each other and that helps.

Hi Jim,

Thank you SO MUCH for your message. It answered a lot of questions I have had: 1.) Can CIPD get better w/o treatment? I certainly feel better than I did 6 months ago, and I have had no treatments. Unless you count the 1 week of a tapering high-dose of Prednisone. I went to see a spine physician when I had the tingling at the beginning – she thought some vertebrae were compressing nerves, so hence the Prednisone. I don’t know if that somehow affected the speed of which things happened. I have had an extensive work-up… everything from MRI’s/CT scans, blood work… no Lyme (tested 3 times) the only thing coming back positive was the NCS, think it showed a conduction block and other things I can’t remember. I’m a fairly health 39 year old, no diabetic issues, my neurologist looked at the arches of my feet briefly and didn’t say a word, so I do not think it is CMT. I do feel like I fall within no category though based on the timing. 2.) What defines CIDP? That was so helpful to read. I specifically asked about that and never heard an answer that made sense. I have had some symptoms reappear when I over-do it, but they are not even close to what happened to me 6 months ago. My ankle reflexes have been almost absent, but my knee reflexes have been fine. LP was normal (think it was a 19) and all blood work has been fine.

The only thing I have read about that I may never get an answer to is Progressive Inflammatory Neuropathy. I shared this with all of my doctors and they disregard it, but my symptoms started a few days after I hand mowed over some ginormous decaying mushrooms while doing yard work. I was literally in a cloud of purple/black dust for a minute, inhaling who knows what. I knew it was bad when it happened, I forgot they were there and I had some people out to aerate and seed our lawn the week before. I don’t know if they sprayed the mushrooms with anything. Anyway, since I don’t seem to fit into any typical diagnosis, I always have it in the back of my mind. None of my doctors seemed to know how to test for toxin exposure, and my thoughts are they didn’t feel like they had to. Just in case, I have taken charcoal tablets and I take clay baths. I will do anything to feel better! Jim, do you know anything about that? It seems to me like the timing is too coincidental.

I appreciate your prompt reply and am happy I joined this group. I’m sorry to hear that you have gone though GBS/CIPD/MFS. You are providing a great deal of help to those of us going through this since most people in the health care community are fairly unfamiliar with it.

Hi there. Sorry to hear about your flare up. I am still trying to figure out if I have GBS or CIDP. It was initially CIDP because it took about 10 weeks for the major symptoms to run through my body. Muscle spasms, tingling, twitching everywhere from my toes to my tongue. I was never in the hospital (although went to the ER twice) and only lost the use of my arms for about 2 weeks, not my legs. My arms were not totally paralyzed, more like 80 % paralyzed. EMG/NCS showed demyelination. But my LP in January was normal, so my neurologist switched it to GBS. If someone would have asked me 10 days ago how I was, I would have said I was on the road to recovery. But last weekend I mowed the lawn and did a bunch of yard work. My allergies must have acted up bc my eyes were totally swollen the next morning and then the twitching started in my calves/feet and my hands were so weak and hurt. It’s been 5 days and I’ve tried to take it easy, but it’s hard with two little kids and life. I do find that the more active I am, the more my twitching acts up. I think that our nerves are just so damaged and maybe our bodies still attack them sometimes (maybe for you your fever, me my allergies?). IDK, my neurologist has never really explained too much to me, I learn more form reading forums and posts by people who have gone through this. So I appreciate yours and wanted to let you know I think we’re in the same boat. Lots of rest and taking it easy seems to be best for me right now. Stay positive, my friend!