I'm back unfortunately

[banjanti]

Hello everybody

Since my last post I've seen two neurologist. The first one did extensive clinical examination and said "100% not ALS"
I felt so much better, he said to redo the EMG
So I did, nerve conduction studies are normal, EMG is unfortunately not
We've spend few hours with my EMG neuro, she found active fibrilations in two muscles
She said motor neuron can be involved, the protocol is to observe
I've asked about ALS, she said it can be it bit too early to tell, she also said there are other MND with a slow progression
Also some viral episodes can cause it and my pain is inconsistent with MND, so it's either two things or not MND
She suggested seeing infection specialist
I have lyme tested, should get the results soon
I'm confused again, not sure what to do
Should I just wait and see if this progresses if it's not lyme?
Or there is something else that shows active fibrillation on EMG, or it's ALS/MND caught early before it shows clinical presentation?

 

[Nikki J]

two muscles could definitely be something else. Perhaps a nerve compression?

It would depend on exactly what they saw whether more tests now are indicated.

If they are following to rule out MND then it is necessary to wait between emgs to see if there is progression yes

 

[banjanti]

She said that according to nerve conduction it's not in peripheral nerves as they work fine
I'll have the print tomorrow and I'll consult my prime neuro
I just hope that inconsistency in pain and no clinical presentation will lead in another direction

 

[banjanti]

It was also suggested to me to check for gynecomastia. Kennedy's disease was suggested as possible if MND was definitely diagnosed
My primal examination didn't show any upper neuron involvement so in the worst case I hope for being lucky in a bad luck diagnosis
If that will be the outcome is anybody familiar with slow progressing MND like this over here or is this forum dedicated to ALS only?
I'm also thinking if I should get the genetic test and be over with it, it's not very expensive where I live

 

[banjanti]

Known neuromuscular PhD said she trust my EMG neuro as she is expert in her field
No peripheral nerves are involved and still there are fibrillations in some muscles
Nobody said ALS, but they won't say "no ALS" either
Clinical examination shown no UMN or even LMN problems
But EMG is dirty
Am I on a road to join the club? :-(
I don't really have any diagnosed MND in family so if it's MND it doubt it will be something different

Has anybody know how much time from bad EMG and onset of symptoms? Is there any norm?
I'm afraid only time will tell right now if it's als or not

Any input is welcome, I wish I would be another hypochondriac in that hypochondriac sub forum
Emg findings and doctors opinions are clear: MND can't be excluded (doesn't say ALS)

 

[affected]

Good news is that there isn't any sign of ALS.
They just cover themselves by 'no ALS'.

Nothing on clinical exam and certainly not an EMG that screams ALS - you are clear congratulations!

 

[banjanti]

Thanks for your answer, it helps
I understand what you're saying, they are no excluding it so if it appears they won't be hold responsible

It's just difficult to wait knowing that it might be there

 

[affected]

No, you have to move on and live your life now.

You are reading it wrong if you are just waiting thinking it might be there - you have been cleared for ALS. It wasn't a dirty EMG in an ALS way, let them work on what they can fix now.

 

[banjanti]

I sure hope it's like you say. My impression is that they said they can't exclude MND, but there is no manifestation of ALS at that point.

My neuro promised to analyse the EMG and let me know on Monday if there is anything to worry about or not.
Worrying it pointless at that stage - I know.
I just can't help it, but I try.

Thank you again for taking your time and answering

 

[banjanti]

Completely lost in diagnosis

Hello again,

I've lived of als related subjects and forms for a while, trying to get different diagnosis, but I'm not getting better and it seems no one knows what's going on
I've been to rheumatologist and he said my hands don't look normal, noticed lack of strength, Reynolds syndrome and is looking for RA, I'm scheduled to have ultrasound in a while. Blood work is negative though
Pain in worst so it fits, but fasciculations are worst as well
Emg shows spontaneous activity of some fibs and fasciculations
The neuro that said it's not ALS is not really that sure, as there is little else that could explain active denervation that was clearly caught on EMG
Clinical exam is fine so far
Local neuro said that not all twitches are fasciculations, but caught on EMG can suggest something serious, ordered spine MRI
I'm trying to stick to BFS version, but EMG seems to deny it
Is there really nothing I can do to get the definite diagnosis but wait?
I have a feeling that neuros I've been to are not doing enough, but maybe I'm wrong
I'm not even terrified by possible outcome, just really really tired of waiting day by day for it to come
I'm not sure if I should let it go or try to find different health team
Fasciculations started about 4 months ago and all clinicals are fine, but they really starting to speed up with plenty of fine one
The idea that all neuros but one are a bit concern and tell me to follow up or call if I notice any changes doesn't point to BFS / anxiety issues I'm afraid
Not sure what to do, any advise would be useful
If it's my few last active months I would really like to know how to use them

 

[lgelb]

Re: Completely lost in diagnosis

(1) One thread at a time, please
(2) Who knows if it's your last active months? You or I could die tomorrow. What to do with them? Live your best life.

 

[banjanti]

That's why I said "if"
Yes we can die any day, we assume we won't and keep doing what we need to do
In my case I may just continue to what I do not want but I'm obliged to eg make money to pay my mortgage, or say screw it and go travel for the last time in life
Seriously I'm beyond anxiety for now, I just want to know it to plan for it
I guess it won't happen

 

[lgelb]

I understand what you mean, but from what we know of your progression, no one, including your docs, is likely to predict such a short lifespan that your mortgage wouldn't be an issue. Even in ALS, the median lifespan is 2-3y. Did you ask her if there were signs of both active and chronic denervation?

 

[banjanti]

Yes I did, she said most is chronic and could be explain by spine issues, although there is also active in form of fasciculatuons seen on EMG that can either be MND or BFS, as she can't note any atrophy or clinical weakness
No UMN involvement seen as well
Pain and joint issues seen by reumo not consistent with MND, but I guess they can just go together

You're right probably there is no way to tell, I still have hope that it won't turn bad
It's just really hard time to wait for the sentence

 

[lgelb]

Have you had physiotherapy for the spine issues? It would be good to work with a therapist who can monitor you over time, and should help your symptoms as well.