That was cipro! Sorry

Well it's impossible to pint finger towards one thing as iit has been going for so long. God knows all the stuff they gave me at child birth. Plus epidural and oh yeah the doc hit my nerve that made my leg jump ( but already had my symptoms before this)

Plus over the tears I had one MRI each year as the doc thought it was necessary and had 6 times emg and ncv test.
Contrast perhaps or may be stimulating the nerves everytime an emg/ncv was done.
May be those were all insult to an injury. I always here people complain about feeling strange things after MRI and emg/ ncv. So sometimes I wounder over goi to docs and keeping wanted to get more teat doneti check for changes made this worse and now what.
Random thought...
Tulips

So what is YOUR plan of action now?

Plan of action...
Hard to do with no insurance. Regardless going for ggt test friday. Waitin on skin biopsy result.

No more MRI or emg.
And getting on a gluten fre diet. Don't know what else.
I am scared to get on the medicines so I suffer in pain and take them until last resort.

I don't know what else to do...

I don't mean to sound foolish or quick to jump to conclusions, but believe me this has not been a quick jump.......one and a half years of searching and going through every test imaginable. The next one is scheduled for end of this month........skin biopsy. Should have had that one first! But Neuro. wanted to rule out "biggies" first.

Anyway........Tulips, I think this Isaacs Syndrome is definitely a possibility, you are right it can include sensory sensations.

The way I understand it, only 40% of people with it tests positive on VgKc test.

You follow every symptom to a tee, and I follow about 80% of them, with sensory being more than muscle in my case, which it says is possible.

I would think skin biopsy would be negative if Isaacs was the case.

Ya its all confusing. I think my cramps and sesory are equal just fluctuate.
It does say only 40% so thats another problem.
I have had many test too but had to beg my doc for skin biopsy but I don't know why her only did one spot.

By the way 12 yrs if testing and no answers!'

Yes, that must be soooooo frustrating. I am frustrated after only 1 1/2 yrs.

It is hard enough to deal with physical issues, but to not know what the cause is, is awful!

The truth is, I don't think the doctors can diagnosis with certainty in some rare cases. As in Isaacs, there really is no test that is 100%, a diganosis would be a guess.....

My Dr. said "Most people with abnormal sensations all over body, never get a diagnosis!!" He says he only sees people about once a year like me! How special I feel!!

I keep saying to myself......."It is better to have no answer, than to have a tragic diagnosis."

I don't know I would like to know.. I think somehow it will change this uncertainty.

I keep thinking of things. I think mine could be autoimmune mixed with toxic from flu shot.
The thing is doctors drag Their feet in doing right test.
Most of line I had to demand and now having more research done I wish I hadn't lost my insurance I would have sone some special blood test with Athena. That check for hereditary And autoimmune neuropathy.

I have congenital spinal stenosis of the lumbar and cervical disk bulges pinching nerves causing the peripheral neuropathy in hands arms feet and legs.I have also had it flare up in my trigmenal nerve on my face. Man did that hurt.

Hi everyone this is my first post. I've been lurking here for some time. The reason for my peripheral neuropathy is from damage done from having 16 cardiac catherizations over 8 years. Started off slowly in the right foot/leg after about 9 caths. They had to move over to left leg because of scar tissue in the right groin. After approx. 4 or 5 caths done on the left side; I stated to notice numbing/pain in left foot/leg. It has since moved up to both knees. Does anyone else have this same situation?