New findings

[Mike31]

Hey everyone, I am sorry for returning, but I finally received my records from my neurology appointment in November.
I have posted before, but I can't seem to reply on that thread any longer.

I have before stated that I was having some feelings of pins and needles in my hands. This usually occurred after doing some sort of physical activity, and once I would stop, it would go away. I also had some problems with my grip strength in my left hand.

Now, two months later the pins and needle feeling is gone, and I have since got my grip strength back to normal. I am continuing in the gym, and I'm actually doing and lifting some of the heaviest weights I ever had.

Yesterday, I received my records from my neurologists and what I have read is really troubling to me..

Sorry this is about to get long, but this is what the doctor wrote:

The patient EMG/NCS of both upper and left lower extremity (he only tested left lower) was significantly abnormal. Widespread conduction velocity showing was noted mainly within the motor nerves though sensory nerves were also abnormal
Focal ulnar nerve conduction slowing was noted at the elbow with conduction block proper at the left elbow. Based on these widespread conduction abnormalities, I suspect the patient had a diffuse peripheral neuropathic issue.
Findings are somewhat consistent with multi focal motor nephropathy with conduction block though this condition usually does not affect sensory nerve conduction. I will check GM-1 antibodies.

Then I see the results of my blood test and I tested negative.
His notes were then: The likelihood that this individuals clinical symptoms are associated with these antibodies have been reduced.

I'm sorry this is so long. i am just very nervous and don't know how to feel. What if he is wrong, and it is not MMN, and it is in fact ALS. This is been an ongoing issue for me for 2 and a half years. If it was ALS, woundn't I feel worse? At the moment I feel 100% like my normal self.

The doctor has said I have conduction block. I have read that conduction block is found in MMN patients but never in ALS. And that alot of MMN patients can be though to have ALS because the conduction block during the NCS can be missed.
But my neuro has said that I do have conduction block.

At my appointment he said to me "I don't think it's anything like ALS."
But now I'm wondering if his opinion has changed now that my blood test came back with negative results of GM-1 antibodies...

Thank you for you time, sorry this was so long. I am just extremely afraid..

 

[Nikki J]

Hi your ncs was the abnormal part not the EMG so still not ALS. Not everyone with MMN has a positive anti GM1 panel. You need to ask your neuro what his current thoughts are but nothing you wrote would make me worry about ALS at all.

 

[Mike31]

I have an appointment with a perpheral nerve clinic at duke on monday. I realize that is so soon, but when I read this write up I felt sick to my stomach and so afraid.

But what makes you say that the EMG was normal? Am I reading it wrong? I thought both were abnormal since the beginning of the write up said:

The patient EMG/NCS of both upper extremities and left lower extremity was significantly abnormal.

So doesn't that mean that the EMG was also abnormal ?

 

[Nikki J]

Everything discussed in the summary is from the ncs part. There is zero mention of anything that would be found in an emg. Since they did not comment on any thing from the emg it would seem it was normal. If you can post the full report we can probably confirm that.
it appears to be awkwardly phrased.

 

[Mike31]

Looking through all of the paperwork, I am noticing that there are no reports on the EMG I had done. He only included my results from my NCS. The only time he references the EMG is in the statement that I shared with you, and also under what procedures I had done, the EMG is also listed there. These are also the records he sent to my doctor that I will be seeing on monday.

 

[Mike31]

I'm sorry, I have found the EMG. It's set up like a table. Am I able to post a photo?

 

[starente15]

yes, you can post a photo

 

[Nikki J]

I don't know what your permissions are. Try go advanced button below the reply box you may be able to post an attachment

 

[Mike31]

I can't find a way to post a photo, but I'm going to do my best to write out what I think it says.

These are the muscles that don't have "normal" across the board.

L. FLEX DIG
PROFIII+IV Insert activity: + Pos waves: None Fibrillations:+ CRD:None Amplitude: Increased Duration: Increased Polyphasia:+ Pattern: Decreased

R. FLEX DIG
PROFIII+IV: Insert activity:+ Pos Waves: None Fibrillations: + Fascic: None CRD: None Amplitude: Increased Duration: Increased Polyphasis:+ Pattern: Decreased

L. FLEX CARPI ULN:
Insert activity: + Pos waves: None Fibrillations: + Fascic: None CRD: None Amplitude: Increased Duration: Increased Polyphasis:+ Patterns: Decreased

R. FLEX CARPI ULN: Insert activity: + Pos Waves:None Fibrillations:+ Fascic: None Amplitude: Increased Duration: Increased Polyphasia: + Pattern: Decreased

L FIRST D INTEROSS
Insert activity: ++ Pos Waves: + Fibrillations:++ Fascic:++ CRD:none Amplitude: Giant Duration: Increased Polyphasia:++ Pattern:Decreased

R FIRST D INTEROSS
Insert activity: ++ Pos Waves: + Fibrillations:++ Fascic:++ CRD:none Amplitude: Giant Duration: Increased Polyphasia:++ Pattern:Decreased

L. ABD HALLUCIS: Insert activity:+ Pos waves:+ Fibrillations:+ Fascic: none CRD:none Amplitude: Normal Duration: Normal Polyphasis: None Pattern: Normal

He then writes Needle examinations of the above selected muscles of both upper and lower extremities and the left lower extremity was performed. Neuropathic denervation changes were seen in the above noted muscles. All other muscles demonstrate normal spontaneous activity and MUAPs.

So it doesn't look like my EMG was a clean one. He tested 14 other muscles that were normal across the board.
But I'm very worried at what he did find..

 

[Mike31]

I think I found how to post the photos

 

[Mike31]

Does anyone know what those results can tell me? I'm sorry, I'm just very very worried. I have been feeling great and thought I was in the clear until I see the results of this test.
I feel like my world is just crashing down on me.
How can I feel normal but have evidence that I might have ALS?

I have been told on here that ALS also wouldn't show up in a NCS, is that true?
Since lot of my problems seemed to be noticed also on my NCV test.

 

[Nikki J]

Hi again. Agreed the EMG is abnormal but abnormal EMGs are not automatically ALS and in my non neurologist experience/ opinion the pattern of involved muscles here does not seem at all like ALS which generally spreads widely in the initially affected area before moving on. And the widespread characteristic is a requirement for diagnosis.

Add to that your ncs which, as you say, does not look like ALS and the fact that you are improved? Really think you are panicking ahead of yourself. You were referred to the peripheral neuropathy clinic were you not? That would seem to be a diagnosis that fits your symptoms and, I believe ,your tests. But we are not your doctor However your doctor obviously did not see ALS either or you would be visiting a different clinic.

Good luck Monday. Try to relax in the meantime

 

[Mike31]

Thank you, I agree that I am panicking before I probably need too
So although you see my EMG was also abnormal it still leads you to believe it is not ALS causing this?
I really have no clue how to interpret an EMG

 

[Atsugi]

Mike, think of it this way: If a doctor told you your XRay showed a problem, would you think you had a broken neck? Of course not; a bad XRay could be a broken finger.

Likewise, an abnormal EMG could mean any number of things. Sorry I don't know what that EMG says, but from everything you've posted, it doesn't look like you need to worry about ALS.

My advice is to ask your GP medical doctor what your problem might be, and follow up in that direction.

 

[Mike31]

Thank you. I agree, I hope I am over reacting.
I normally am not like this. But I don't really know anything about the nervous system. So when I saw these test results I just assumed it was going to be something very bad going on.
I need to stay off the internet. You read these stories of people who were perfectly fine, and then boom, they could have ALS.
Or I'll read a story here similar to mine, but yes I'm sure most of them did not end up with ALS.
I really feel like my normal self.
All tingling has gone, and my grip strength has come back. I am back to being able to curl 50ibs again.
With ALS my strength wouldn't come back?
I think one of the most confusing things here is the difference between weakness and clinical weakness.
Does it not happen gradually?
I have read the sticky multiple times.
And it says ALS is about failing. If you can still do things, but they are now harder, you do not have ALS.
Well my question is how do you get there? Isn't it a gradual process where you'd become weaker gradually, making these tasks more difficult, until one day those tasks become impossible?
I'm a little confused by that.