Finally have appointment

[33andworried]

I posted awhile ago about symptoms and said I was going on a trip I had been saving for for awhile so my diagnosis process had to be put on hold. Not sure if someone can link my previous post so I don't have to write all my symptoms but essentially classic ALS symptoms (twitching, weakness, atrophy etc) and I would say the weakness started in my left shoulder and progressed to left leg and now right leg so forth beginning from March (8ish months)
(Previous post here: Quick progressing symptoms, delay in diagnosis)

Finally have an appointment at the ALS clinic in Vancouver, BC (if anyone has information about it that would be great). Obviously my neuro will be able to answer this question but thought I'd see your thoughts anyway. So even though I feel very weak all over and it has progress limb to limb and may even have some abnormal shortness of breath atm I would still say I'm fully functional. I think if I were to take an alsfr test I would get a full 48. Would it be common to be 8 months into symptoms and not have any clinical functional impairments even though I feel extremely weak (particularly in the legs?) I am 33 (M)and quite fit and active in strength and aerobic training before onset which I'm sure has helped.

Thanks
Blair

 

[ShiftKicker]

Hi there-

Are you visiting the GF Strong clinic, or the one at UBC? Regardless, the neuros are all experienced and will be able to provide you more information. At this point, you are looking for diagnosis, not actually attending the ALS clinic, so feedback about the ALS care clinic is not particularly helpful. Which practitioner are you seeing? When? You can also use the forum search function to see what people have posted about the Vancouver ALS clinic as well.

 

[33andworried]

Thanks for the info!

Tomorrow at UBC, Dr. Christine Stables. Yeah it's at the ALS clinic so I've never questioned that there would be any issues in the doctors spotting what's going on either way.

As scary as it is, I've seen so many doctors in the last 6 months that haven't been able to offer me much help so I'm just happy that I will finally get some answers

 

[33andworried]

Hi

I wanted to update when I could post my EMG/NCS results but the process of attaining them has been frustrating. Brief rundown of symptoms below

Subjective weakness (no clinical) in left arm/leg (started in left shoulder) you
Left arm/thenar atrophy
Generalised twitching
Numbness tingling, throughout body that varies by day and area but mostly in left sided limbs
Bilateral brisk reflexes
Mild clonus
No Babinski
NCS- Normal
Emg- Unknown

I visited the ALS clinic in Vancouver and my clinical exam was done by a fellow and my EMG was done by the ALS specialist themself. Good news is that she said she does not believe it is ALS related. Bad news is that because I was so surprised/relieved I did not really ask too many questions about what the tests showed or what the believe could be causing the issues. I'm being sent for a neck and brain MRI

The clinical was a bit frustrating as I believe once I told the fellow that although I had subjective pain/weakness I was still able to do everything he kinda didn't know why I was there and seemed to think I was there because of twitching even though I tried to iterate I was there for the atrophy/tingling/numbness etc.

My PCP got a brief related to the appointments that said potential BFS but seems an odd theory given the potential UMN signs. I mean when I first started twitching I clung on to BFS until the other symptoms began coming on. I am not sure if all the symptoms I mentioned in the clinical to the fellow were relayed to the specialist (she doubled checked the reflexes when she came in though).

Anyway I'm not worried about how the EMG was done as the specialist did it herself and in both the affected limbs and spine. I'm sure once I have my MRI and have an appointment there will be a better understanding but I guess my biggest concern at the moment is because I cannot see the EMG results themselves that I don't know if they showed anything at all and maybe because I am still fully functional that they don't suspect ALS. So I guess my main clarification is that from what I understand, if the EMG was done in the affected limbs then it would be pretty clear if MND/ALS was causing the issues, is that correct? Will post EMG results when I get them.

Thanks and I appreciate your time

 

[lgelb]

Yes, the EMG is the EMG. It does not matter what symptoms you left off or came later or how functional you are.

An EMG that demonstrates ALS has some pretty specific things in it that would certainly not lead a specialist to believe you didn't have it.

There may be other abnormalities that lead them to want the MRIs. That is a good thing as it gets you closer to what is often a treatable cause, almost always more treatable than ALS.

 

[33andworried]

Sorry I forgot to reply. Just wanted to thank you for the clarification. Much appreciated