New diagnosis
 

Ok, since my last diagnosis I've consulted a new neuro, he did pretty long clinical evaluation and didn't find anything abnormal, he said he doubts I have polineurophaty, suspected tetania if anything, told me to get tested for lyme and if not for tropical infections and redo only nerve conduction
I went to do EMG but the doc doing it had a different idea when asked about my symptoms and decided to do needle EMG
After 2h of shocking and pinching she said she didn't find any problems with conduction and thinks peripheral nerves are not in involved, there are however two muscles showing fasciculations and some fibrillation
She said she can't exclude motor neuron involvement, but admitted it would be inconsistent with pain
Lyme is still on the table, I should have results soon
But I'm anxious again about MND not being ruled out by EMG, I don't know should I trust my first neuro who said "100% not ALS" or the other one. She doesn't call it ALS of course, but we all know that if it's motor neuron it's always a possibility
I'm wondering what also could cause fibrillations in the muscle without any atrophy, weakness or other clinical presentation
Maybe she is misinterpreting it
Fascis bother me all the time, but it's legs and arms
Legs muscles didn't show any fibrillation but I feel them there
My electrolytes in blood are normal, apparently they can still be low in tissues
Not really sure what to do
The idea of EMG neuro about waiting half year to see if it can be NMD makes clinical sense I'm sure, but I can't be in that state for so long
Maybe sounds weird but I hope lyme show up positive, at least it will show in direction of devastating but treatable disease

One of my neighbours has MND. From what he has told me the early signs were weaknesses in his leg and hand muscles. He was diagnosed 10 years ago - there has been some progression but he still leads a fairly active life. Probably this reflects the fact that there are many different kinds of MND.

Electromyography and nerve conduction velocity studies often form part of the diagnosis.

You might find the information in this link helpful in discussing things with your health care team; http://www.ninds.nih.gov/disorders/m...n_diseases.htm.

All the best.

Thanks a lot for that reply, my anxious mind just think "als" automatically, but I have absolutely no weakness anywhere
I've made the appointment to still another neuro that is closer to me and available soon, so on Wednesday I'll have both full EMG results and consultation, depending on the outcome it can put me at ease
Emg neuro said exactly the same, there are hereditary mnd with very slow progression, she said about an 80 old men that had mnd and didn't know it, he was tested because his son have problems

But MND excludes pain so it may be something different altogether, I hope my next neuro will lead me in right direction, but any input from you guys is valuable
Thanks a lot!

My new conclusion: first emg shows slower conduction, second doesn't. Both show fibrylations. I'm thinking: either one or the other is wrong, or demynylation fall into remission.
I have been bitten my massive numbers of mosquitos in Zika and dengue zone
Zika is proven by WHO to cause GBS, GBS can be mild and fits my symptoms in that case
Gbs is causing lower motor neuron lesion, upper is not involved according to examination

Should I push for GBS diagnosis? It makes much more sense for me, but maybe it's wishful thinking

There are tests (looking for Zika-specific IgM class antibodies) which show whether somebody has been infected with the virus.

If you have been infected with it then specific investigations of the possibility of GBS are worth raising with your health team.

Makes sense, I'll do it

Hang in there Banjanti. About 1.5 years ago I was in a similar position to where you are now. I had pretty much convinced myself that I had MND - and that put me in a significant depression. I'm doing much better now, and I am convinced that a good portion of the symptoms I was experiencing at that time were stress related. Keep looking for the answers, but live it day by day, and take time every day to just relax.

Hey, thanks, I appreciate it. Mind is a powerful thing and I'm really digging myself deeper into depression every day like you say

A known PhD neuromuscular neuro said to me today that she doesn't really know what I have. She said my EMG neuro is kind of authority in that field, so she trust her work
Doesn't look like polynurophaty, problem is elsewhere, maybe not even in the nerves when it comes to pain
When it comes to denervation, no ALS clinical signs, but can't be excluded
I'm started to worry that I cough it on EMG because of unrelated pain symptoms before it lead to more noticeable symptoms...
Or can still be radiculophaty
I've brought viral involvement but she's referring me to a specialist in that field to check it out
She said I don't show gbs symptoms

It looks like I'm running out of options and the worst is not excluded :-(

I'm sorry to hear that they're having a hard time figuring out what's wrong I truly hope that you get a solid diagnosis sometime soon.

Best wishes to you,

Cliffman

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!