not good

bart1 · 10-21-2009, 07:13 AM

Hi,

It took me some weeks to get me to write this. My last neuro app didn't go well.
I got the ALS suspected label on me. I have to go back within 3 months.
There were abnormalities in my clinical: hoffman, few beats of clonus in ankles, brisk reflexes, twitching all over. I've got slight weakness in my left arm and severe left shoulder and arm pain with continuous left shoulderblade twitching. I'm also have sort of stomach cramps/pains

It took them almost 2 years to finally see something is really wrong. I'm so upset, hurt and angry. For 2 years they said nothing was wrong, it would be BFS...
I saw mnd specialists who failed. How is this possible. My feeling is they don't know a thing about ALS and that they say it's nothing untill you really start falling, tripping, dropping things. From the first day I knew what was wrong. Do you really have to study this long to know nothing and call yourself a specialist?
Now I'm all of a sudden not a typical case.
So much has been said to me, twitching without weakness is no als, no pain with als.
I twitched nearly 2 years without weakness, my shoulder is in severe pain.

Sorry to write this down like this but there are still a lot of emotions going trough me.
I'm 30 years old and I already have to say goodbye. I don't know how to cope with this,sorry

katmomma · 10-21-2009, 08:30 AM

Bart, did they do an emg? I'm so sorry your appt. didn't go good. Did you see a specialist or just a regular neuro?

Blizna · 10-21-2009, 08:30 AM

Bart, I was waiting for your post so long and Im so glad you let us know. What about EMG? I think now its the time it will give clear answer, once you are twitching and feeling slight "weakness", the lack of denervation would show its not ALS. If I were you, I would go for an EMG.
I still hope its anything else, I think it still could be different disease, I know we spoke about exceptions but so small number twitched more than year or so, I just dont want to believe you will get this crap.
Also I wanted to say that you dont have real "ALS suspected" label, this one got people who have clear ALS finding in one limb or so (El Escorial). I still think you are too atypical and the ALS most obvious sign - weakness - is only slight as you say.
Man, hang on and keep finding the answer!
EDIT: I made a quick call to my friend who is neurosurgeon (no MND specialist) - hoffman sign is also present with latent tetany and tetany causes cramps, twitches.

bart1 · 10-21-2009, 08:53 AM

It was a neuro specialized in neuromusc.
He said als is mostly a clinical dx with support of emg. clinical had abnormalities pointing to ALS. They said even without emg they can give that dx but EMG will be repeated in jan.
EMG was done , don't know what they saw in it but after emg and clinical he said abnormalities are pointing to als
I have: hofman, twitches everywhere, non stop in shouderblad, shoulder en arm pain (left), few beats of ankle clonus, shortness of breath, left arm weakness (not severe but more dropping things, lifting things is very painfull and difficult), rapid heartbeat, cramps in stomach, also hand shows signs of atrophy but he wasn't sure it was

Blizna · 10-21-2009, 08:59 AM

I couldnt wait until January, but that just me.. Well, interesting point about giving ALS based on clinical exam, EMG should always confirm ALS diagnosis and AFAIK you cannot get oficial ALS dx based only on clinical exam. But I get the message that when came a patient with atrophied hand, twitching tongue and increasing weakness, the EMG is just "official" procedure to do.
Bart, I know on aboutbfs.com now reigns idiocy and stupid refusing facts, but I remember that there are people with clonus and hoffmans too so I still dont think you are going to end up with ALS.
Has you weakness worsened? I remember you spoke about that 2 months ago.

bart1 · 10-21-2009, 09:09 AM

emg was done
yes weakness worsened with pain

Blizna · 10-21-2009, 09:14 AM

But the EMG was done a way before, it would change now. I think if you have it clean now, with those symptoms, it will be valuable...you know what I mean. I hope with your pain its something different, multifical motoric neuropathy or I dont know...I just keep my fingers crossed and wish you luck!

serenade · 10-21-2009, 10:53 AM

I have the same thing going on in my upper right arm and shoulder. My shoulder pops in and out ( I can hear it click) and the pain radiates from my shoulder downward into my upper arm which it pretty sore daily. I am not sure it is ALS related; I think I over extended it and with my muscles being weaker it just does not recover. I found that holding a 3lb weight and moving my arm in a full range of motions help decrease the pain. Hope you get some relief from the painsoon.

LaurentCH · 10-21-2009, 01:56 PM

dear bart, i am very sorry about your condition!
what is strange is, that i always thought ALS to be a diagnosis of exclution, means they first have to do all the tests for lyme, d-defieceny, mercury poisening and so on before they can even speak about ALS. BTW i also have this shoulder problem, also the popping when i move my left shoulder, twitching (though not 24/7)pains and soreness.
i just had a wonderful holiday in the great barrier reef to get a little psychological relief.
my tip: try to find a tibetan doctor in belgium. there are a few in germany. it is worth a try. i don't trust the western medicine anymore.

bart1 · 10-21-2009, 02:57 PM

Laurent, all those things have been eliminated before - lyme, all bloodwork, ms, b12,... I'm 2 years into this remember

wright · 10-22-2009, 12:48 AM

Listen Bart, you haven't been diagnosed with a single thing. Your pathological reflexes can be caused by anxiety and your anxiety has been through the roof since we've known you on here. So far your EMG's have been clean . . . clean EMG . . . no ALS. It's as simple as that. Worst case scenario right now, you have PLS but that certainly doesn't mean you have it. Try to get the EMG done sooner than it's scheduled. Given your mental state, I think you'd have a pretty good chance of convincing your neuro to do it sooner.

bart1 · 10-22-2009, 03:39 AM

I think I didn’t explain it well enough
I had an EMG AND a clinical at the neuro app.
He said, the abnormalities in the clinical combined with the EMG suspect a neuromuscular disease aka ALS. I want to see you back again in three months to see how your situation progressed and do another emg. I don’t exactly know what is seen in the EMG, he didn’t specifically tell me that. He told me about all the clinical abnormalities that he found straight away, like hoffman, beats of clonus, brisk reflexes, weakness left arm/shoulder, fasciculations in shoulder area ombined my observations: shortness of breath, pain in shoulder, weakness, fascics,…
He told me I don’t fit the classic pattern and that’s why it took so long (2years) to get more suspicious signs.

wright · 10-22-2009, 09:28 AM

Then ask for the EMG results and not just the impression of the neuro; I'd like to see the actual results.

Danijela · 10-22-2009, 09:34 AM

I too, am curious about EMG results that combined with the above mentioned neurological examination pointed towards ALS. Going through EMG results line by line would have been my priority, and I certainly could not wait for several months without knowing exactly what the EMG revealed. But I understand others may feel differently.

Blackpool · 10-22-2009, 10:53 AM

Bart1 get a copy of the EMG results and let Wright take a look. You might get some peace of mind,