neuro says 50 50....very scared

[jimbobby]

hello everyone

i posted about 3 months ago and was given a diagnosis of bfs by my neurologist although he had concerned over my calf atrophy. It was upon examination definitely smaller on the left calf and also was my thigh.

Since then the twitching has continued possibly slightly more widespread but not dramatic. My calf has i think lost more definition although actual measurements on rest have not changed much in 3 months. I had a neuro examination yesterday with different neuro and he saw atrophy in my left calf, thigh, left deltoid and bicep (the original neuro i don't think checked my upper body but i believe this to be recent change in upper body).

I had a clean EMG / Nerve test back in mid july. The Neuro yesterday read the results and said he has no reason to doubt them at that date. However based on my presentation he says i need to now have another EMG / nerve test and he says that he feels i have a 50% chance of having ALS. Now I am a complete wreck and petrified.

My confusion is that I would have thought if I had atrophy and twitching when i did the test 3 months ago then it should have been abnormal? This was only after 4 or 5 weeks of twitching however but the calf difference was clear.

Please can anyone shed any light as to what maybe going on here. I really appreciate any words of advice or help I am really scared. Please feel free to ask if more info is needed.

I am a male aged 41

 

[Nikki J]

Was this a neuromuscular specialist? What did your exam show in terms of clinical weakness, abnormal reflexes, sustained clonus or spasticity? If you had none of these I don't see how you could get a dx of ALS. If you had some it does not mean ALS is certain but then I could see why it is on the table It seems an odd comment to make if those issues were not discussed. The EMG is a tool and an important one but the other things matter as well.

If you are not at Kings MND center I would go there

 

[jimbobby]

Was this a neuromuscular specialist? What did your exam show in terms of clinical weakness, abnormal reflexes, sustained clonus or spasticity? If you had none of these I don't see how you could get a dx of ALS. If you had some it does not mean ALS is certain but then I could see why it is on the table It seems an odd comment to make if those issues were not discussed. The EMG is a tool and an important one but the other things matter as well.

If you are not at Kings MND center I would go there

Hi Nikki thank you so much for replying.

I don't think he is a neuromuscular specialist - I currently live in Hong Kong and I'm not sure who is here? He said is sees about 3 or 4 cases of ALS a year if thats an indication? I was somewhat shocked by the conversation so didn't ask some of the questions i wanted to ask but can try and answer your questions.

Clinical weakness i don't think so - he didn't mention it - he didn't do that many strength tests. He commented reflexes were brisk. Clonus don't think so i guess id notice that. spacisity again i don't think so and he didn't mention this.

Does that help?!
Thank you again
Bob

 

[Nikki J]

General brisk reflexes are usually normal. When not accompanied by anything else it sounds like you do not have upper motor neuron findings. To truly have ALS you need umn finding plus lower ( lower is clinical weakness and emg changes specific to ALS). There is an MND that is lmn only but you still do not have weakness.

Seeing 3-4 ALS patients a year would not be a neuromuscular specialist. Mine sees significantly more in a day! There are general neurologists who see everything- strokes, migraines, etc etc. that may be the type you are seeing?

Sorry I recommended Kings since your profile said London. If this does not get quickly settled you should seek an ALS clinic for an opinion. There have been people here diagnosed by general neurologists who had their diagnosis overturned by the neuromuscular.

I am concerned by the 50-50 comment without more clinical findings. It may be partly cultural but it seems so strange. Do let us know

PS extensive quoting is discouraged here as it makes the message longer and hard for some PALS to scroll using eyegaze, a toe or part of a thumb. Thank you

 

[jimbobby]

Hi Nikki,

Thank you again for your reply and just following up with an update. I had the EMG and it was normal and findings as I understand it as per 3 months earlier. All limbs tested including the areas of atrophy. So that is a relief although I do seem to have atrophy / wasting on areas of the left side of my body (although no clinical weakness) which seem unexplained so I am still concerned. I have just been asked to keep an eye on things now. Not sure what else I can do for now?

Apologies for the extensive quoting I wont do that again. I like everyone else on this forum am humbled by the time people affected by this take to help out worriers like myself. Also thank you for the London recommendation. I will keep it and hopefully wont have to use it.

All the best
Bob