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Living with Polyneuropathy CIDP, GBS, & CMT

New to Group! Hello, and I'm eager for advice!

Hi Everyone- I'm very thankful to have found this group! I'll try to summarize my experience in a nutshell:

I'm an almost 53 year old woman, wife and mother of 4, full-time elementary school teacher, and just found out that I have CMTX through the genetic testing ordered by my new neurologist a couple of months ago. I've always been told I had CMT since my father had it severely and had me tested at 19 with an EMG, but never knew what type I had until now. However, I have lived relatively symptom-free, except for having cold feet in the winter, UNTIL this past year when it hit me like a "freight train." I'd gone through several stress-inducing situations when it all hit me, plus just entered menopause (sorry guys if this is TMI, just keeping it real!) during this time, so believe that's why my CMT took a bad turn.

I mentioned I have a new neurologist, at Emory Hospital/clinic in Atlanta, an excellent teaching hospital, because the other one I have been going to in the small town where I live did not have a clue about CMT. When I first started having the strange symptoms I was having (severe parasthesias i.e. freezing cold foot and cold spots up and down my body, burning hot feet, non-stop muscle fasciculations in my ankles, prickly/pins needles feet, stiff hand joints, and tinnitus) and went to him last August, I assumed it was because of my CMT starting to progress. However, he did not think I had CMT since I wasn't presenting it in the classical way he was familiar with (I was having hyper knee reflexes and have good strength when walking on heels and toes). So because of this (him dismissing me when I told him I had CMT), I underwent MULTIPLE MRIs, blood tests, vascular tests, ultrasounds-you name it, I had it! It wasn't until this January that he ordered a nerve biopsy of my skin (skin punch biopsy) when it revealed that my sensory nerves were significantly damaged/reduced. So he diagnosed me with "idiopathic small fiber neuropathy" and put me on Gabapentin.

I'm not the kind of person to just accept that there was not a cause for this, so I told him I wanted to be sent to Emory in Atlanta-to their neuro-muscular department. That wonderful doctor there spent over an hour asking me lots of family history questions and concluded that I did indeed have CMT-and she suspected it was X-linked due to my father's condition and my great uncle's condition (wheelchair bound). She ordered genetic testing, and voila! As she suspected, I do, indeed, have CMTX (as shown on the GJB1 gene).

Now...I have so many questions! Have any of you experienced your CMTX primarily affecting your sensory nerves? Or have you heard of this? I read in some article that CMTXers tend to have worse parasthesia pain. Until I knew for sure that I had this, I NEVER knew CMT affected the sensory nerves! I'd always thought it only affected the motor nerves. I also suspect it is affecting my sensory hearing nerves which explains the annoying bouts of tinnitus I've had over the years and my partial hearling loss.

Do any of you have severe parasthesias in your feet and legs (and sometimes my hands)? I have times when I feel like my right leg (it affects my right side much worse than my left-anyone else have this one-sidedness?) is frozen in a block of ice. I also get ice cold spots/patches up my thigh, buttocks, and side. At other times, when it's hot outside especially, my feet feel like they are on fire and I can only wear sandals. This is happening lately now that the weather is warming up here in Georgia. Most of the time, my feet feel prickly/tingly.

I also, and here's a fun one, get very irritating creeping parasthias in my groin area! So bizarre. I thought CMT only affected hands and feet, but I seem to have a strange whole-body version! I even feel prickly sensations on my back at times. Do you or does anyone you know have this symptom?

Finally, have any of you dealt with these ANNOYING muscle fasciculations in your ankles/lower legs? They drive me nuts. It feels like a small motor is running in my ankles that NEVER stops. They get much worse (I can see my muscles twitching) when I'm exhausted and have done too much (which is normal for me as a teacher!).

So, at this time, I am on Gabapentin. I was doing fine for about a month on 900 mg./day. However, it seems to have stopped working over the past two weeks when I started on Doxycycline for an infected tick bite (our family loves to camp, and I brought home a friend!). I have upped it to 1800 mg. hoping for relief, but I fear that it will also stop working. I have an appointment with my neurologist in Atlanta on Monday and look forward to discussing what medication will help me cope with my neuropathy pain. What have you all found to help the most?

Finally, I've been all over the internet trying to find ways to alleviate neuropathy pain and discovered the following supplements could help: Alpha Lipoic Acid, Acetyl L-Carnitine, Benfotiamine, and Fish Oil. I've been taking these since March. So far, I've not been helped by them, but thought I had nothing to lose. They've been using these, especially ALA, in Europe for years.

I'd love any advice any of you can offer! I've already heard from CM! Thank you so much!!!!

This is definitely a journey and by God's grace, we will all find our strength to endure til the end.

Take care, and thank you so much for this group!

Mandy

I have CMT but don’t know exactly which variant because the standard test here in Ontario only checks the top hitters. I am outside that range and the cost of $4700 of my fellow tax payers money wasn’t worth it for me to continue the testing.

Im at 3X900 of gaba currently and that has helped me considerately!

As far as symptoms go, I think that it is the “wild wild west”, as I have things like slurring my words, Renaud’s in hands and feet, muscle twitches bumblebees in my socks(at least that is what it feels like LoL) .

The Doc will probably slide you up on the meds to get you some relief.

I have CIDP and you pretty much just explained a lot of my symptoms.I have motor and sensory nerves effected and have that icy cold feeling in my legs.Doctor said its due to circulation, since your nerves help control that and mines messed up. I also get this burning icy hot feeling, and stinging burning pain. I also get weird vibration sensations and nerve burning in strange such as the groin area and buttocks…I also have memory issues, the slur in words occasionally, and difficulty writting, just to name a few of my symptoms… I seem to have a variety of issues due to the motor snd sensory nerves being effected. So you are not alone…Hang in there.

Mandy- I am also new to all of this and I am learning from reading all these responses. Can you please tell me the name of the Emory doctors that you used- especially the ones that you liked? I live in Atlanta and I am having a hard time finding someone who can help diagnose what is going on with me. I am scared and feel at a loss…
Thanks!

Hi- My doctor at Emory is Dr. Saila Upadhyayula (who goes by Dr. U.). She is VERY busy since she is also one of the associate professors of neurology at Emory Medical College. One word of caution, though. When you call to make an appointment, they’ll probably not have an opening for about 6 months. Don’t be discouraged, though. Scheduled it for then, but tell them to put you on the cancellation list. I did that, and they called me about 2 days later and I got in the next day. Good luck!

I had GBS, which had most of the same sensory symptoms at the beginning, but now i mostly have pain and muscle spasms. I can give you some info on the medicine though. I have taken as much as 3600mg gabapentin a day for nerve interfearance issues after gbs. Now i take 1800 to 2400mg because the side effects were worse than the nerve pain.

One thing to remember though, antacids and possibly suppliments reduce how much gabapentin your body will absorb. I read online dont take antacids 2 hrs before gabapentin.

Lyrica is the next step i was told after 3600mg gabapentin.