Is it ALS ?

[Nikki J]

Did you clarify emg discrepancy? That is the important thing for your testing

ALS can not be diagnosed by mri. Occasionally there will be signs that MIGHT be ALS and need to be explored but not necessarily

I don’t know what genetic test you are having but ALS is not diagnosed by genetic testing. The criteria actually say genetic results are not be factored into diagnosis at all.

 

[Monkeymind]

So, about EMG. I will do summary.

1. Prolonged F waves for ulnaris, medianus in right hand and in right leg( didn’t remember the name of the nerve), and ulnaris for left hand.
2. Poor/ bad conductions for ulnaris and medianus in right hand and poor conduction in ulnaris on left hand.
3. Normal, wide and polyphasic amplitudes.
4. CMAP or SNAP ( don’t remember well) for medianus right hand.
5. Fibrillations and positive waves.
6. Normal conduction in leg.
7. Fasciculations.

it is hard to translate exactly the findings and the documents are with the neurosurgeon , so I try to recall my memories. I really try to explain everything but my English is not that good.

My main neurologist said that for now I do not complete criteria’s for MND or ALS.

So if there is no genetic test for ALS probably it’s something else in mind. Will know on my next appointment with the doc.

An year of agony I hope that 2024 will be better.

 

[Nikki J]

To be clear there are genetic mutations that can cause ALS. However having one won’t get you diagnosed with ALS. You would have to meet the same criteria as anyone else which your neurologist has said you do not at this time.

 

[Monkeymind]

So, quick update again,

I went to a guy go practice some bioscanning with six hands, alternative medicine. Found my stomach and anxiety disorders. Didnt find anything strange in spinal cord and head ( which is confirmed by MRI). He is like touching you and says what’s wrong. Didn’t find my neurological problems. He said thats he is able to diagnose and feel MS, tumors, and other abnormalities.
THEN shared my troubles and he said to do a EBV test, because that could cause my issues. So some of the results are ready EBV IgM <0.10 (borderline) and IgG 32 (positive), waiting for IgG EBNA.
I will contact my neurologist for further expalinings of results, already saw a lot of neuro disorders related to EBV. Sad is that there is no fixed cure and probably the prognosis will be bad, don’t know. If someone has more info , would be gratefull if share.

that is for now.

 

[lgelb]

A lot of healthy people have positive EBV tests from a past infection like mono. It does not necessarily mean anything sinister.

 

[Monkeymind]

I took some time to understand what it mean, so if EBNA is positive it mean infection in the past, but is it the reason for neurological problems it’s unclear. For that purpose I need to do some EBN DNA and B-cells and T-cells blood or liquor samples. Thats it about EBV.

I would like to ask something else if it’s appropriate. How fast the muscles atrophy progress in ALS or MND? 6 months passed since my first stay in hospital. Since then I measure my hands and legs for additional atrophy, i don’t notice anything and the measures remain the same. I got severe fasc (24/7) since August, so if they are related with ALS or MND wouldn’t there be noticed additinional atrophy, especially in right hand in which all started?

I was treated with neurotop 600 for fasc and it helped but later I got allergy reaction and had to stop it, which is really sad.

 

[Nikki J]

This is an unanswerable question as people progress differently but it doesn’t matter. You had a non als emg. Your neurologist said you did not have ALS. You are obviously flailing about and seeing multiple providers including an alternative medicine person. I suggest an i depth discussion with your gp about an organized plan and how to deal with your worry.

I think we have done all we can here. Please no more posting unless ,as I doubt will happen, a neurologist diagnoses an mnd you may also post if you are reporting a definitive diagnosis by a mainstream MD that you fully accept