Thanks! I hate that limbo state and I'm an anxious person

Hi guys!

A little update, I had lumbar spine MRI and to my great surprise it seems it's causing most of my issues. The pathology is pretty extensive but I hope not very serious, I'll discuss it with my neuro tomorrow.
All that fibs on EMG I was so scared about is most likely caused by pinched nerve in the spine.
Not really very happy, but it's way better news than MND

Thanks for all support and advice!

Glad to hear you may have an explanation. Hopefully there is a treatment that can help. Please keep us updated on your progress.

My SFN symptoms are likely coming from my lumbar spine.
 

I had 2 nerve conduction studies and 1 needle EMG. The PCP doctor thought she found some issues with the NCS but the neurologist didn't like the way she did it, repeated it and found nothing. Same for the needle part. After cervical and lumbar MRI's the neurologist told me it could be contributing to my problem as I have plenty of issues (which I have listed in other posts) but wasn't the main cause of my burning, etc. I have had lumbar issues for many years, but since I wasn't experiencing real back pain I believed him. I then had lots of tests to try to figure out the main cause and ALL were negative.

I went to a chiropractor who helped me so much with my symptoms that I started to wonder if the neurologist was wrong. I then went to a neuro-surgeon (aggressive) and a muscular skeletal doctor (conservative) who both feel the lumbar issues I have are the cause. I am pursuing this avenue and recently posted under the subject "Nerve Block."

I am not recommending chiropractic. For my particular issue it helped. Nor am I recommending nerve root blocks or Epidural Steroid Injects. I just feel finding out the cause if possible is the best thing I can do for myself. I welcome the chance to possibly be in a position to make a choice, difficult though it will be.

Here's hoping you get some answers.
Carol

Unfortunately fasciculations can't be explain by what is seen on my MRI
Also it's apparently not that bad, rehabilitation is sufficient
But MND stays on the table as unlikely event
Was told "most likely bfs"

Now sure what to think about it all

I have neuropathy in my feet caused by a critical illness. I also had issues in L3-4-5 that contributed greatly to the pain in my feet. The pain I described versus what the MRI showed was completely opposite. It took a myelogram for the surgeon to see what was really going on with my back. I had lumbar surgery, screws, rods, spacers, the 3 disks are now fused. My back pain is pretty much gone, I still have neuropathy, its not going away but at least I don't have all the other pain adding to it.

My surgeon told me a couple of interesting things
1. Different views of different peoples backs show many things, some look like they should be doubled up in pain but feel nothing, others look like they should be fine and are in agonizing pain. It all depends what signals the nerves are sending.
2. Many of the people he operates on by 12 months most of the pain in their feet is gone, once the nerves completely settle down. Since my neuropathy is from a critical illness he didn't think I would experience the same, at 11 months he is correct. I take Gralise (time release gabepetin), I still have those days that it flares up but knock on wood its way better than it was a year ago so I got that going for me.

Good luck I hope you find something that provides you relief

Question for Banjanti
 

This may seem random but I have a reason for this question:
Do your fasiculations and fibrillations occur at specific times, or
are they random?

In the beginning I had fasiculations that have pretty much disappeared. I also had and still have twitches that occur at night, usually after I've been asleep for an hour or 2. I believe them to be Restless Leg Syndrome, which is a different beast.

They are pretty random
Also you won't feel fibrillations, just fasciculations
Fibs are caught on emg and mean denervation, not a good sign at all

Thanks for sharing your story!