Is this part of?

[bart1]

Hi,

I wanted to stay away from the board until I've got my final diagnosed. As I mentioned before in another post I went back to my GP with my echo results etc and he says every 'normal' thing has been eliminated and he is convinced there is something wrong with my nerves and that he now thinks it could be MND afterall.
After 23 months of widespread twitching this came as a shock to me. I have to go to the neuro next week for the tests. It's so hard to get, 2 years long they are saying I have BCFS, nothing to worry, see a therapist etc and know this...ofcourse now I get lines like " in medecin nothing is 100% and there are always exceptions, this is not our fault" blabla, I really feel very bad because I always tought something was really wrong.

my symptoms so far
- left shoulder and arm pain - with an the (near) left shoulder blade continuous fine twitching & buzzing and slight weakness in arm
- widespread twitching for 23 months
- At night (last couple of days) I wake up and everytime my pink and ring finger are completely numb, every time on both hands, I can get them back to normal when I shake them (- Is this an ALS symptom too?)
- Since last Saturday I've got a lumbago, just like that, is this maybe because of the muscles in my back that are getting weaker? So als related?

Thanks

 

[ktmj]

No, no, no, and no. I think that got all the questions.

Lumbago - dang had to G**gle that - I was thinking that referred to me in college and involved beer and drunk chicks. (Gotta remember though I'm from the Southern US and we don't speak real English).

Seriously dude - by all means let the neurologist check you out, but the numbness sounds like anything but ALS.

 

[olly]

hi bart.
i read your other thread on shoulder onset and did not really want to comment but then saw this.
i have pls (10yrs)that started in the legs and spread upwards to now involve bulbar.
some years after onset i had fassics in my upper back/shoulders and have some atrophy there. also i had some severe spasms in my arms a year or so ago that caused my shoulders to freeze up,now i'm in constant pain (as well as everywhere else)in my shoulders.
(i was going to add something about the back pain but will refrain from going there.)

yet bart........i dont have als .
i was worried about als early in my diagnosed(understandable as i have more symptoms than you) but its not als.

your gp is not qualified to assume a possible mnd diagnosed,that is something only a qualified neuro(mnd neuro not general)can make.
i am not a betting person but the qualified neuro giving you the als allclear is a dead cert.

 

[ktmj]

bart, I reflected on my post and realized I was being a little too much of a smart-aleck. I like to playfully pick at people (not in a mean way), but was afraid I went over the top, especially when it's on the internet and sometimes things are misinterpreted.

I know what it feels like to have weird stuff going on and having no answers. Try to relax and let a competent neuro figure it out.

My apologies.

p.s. I still think you're GP has been a little irresponsible. My GP here is a great GP but hardly even acknowledges what I am telling him. Heck, the neuromuscular specialist I see still thinks I am psychosomatic. And I've been at this a while with slowly progressing weird symptoms that I suppose could be anything.

Hang in there - the real answer will probably be a while coming. I really wish you the best.

 

[BethU]

Bart ... I'll chime in, too. I'm no doctor, but the hallmark of ALS is weakness. That's usually the first symptom, and it's all that matters.

If ALS patients were numb, tingling, twitching, buzzing, aching, etc., etc. but were able to walk and talk and use our arms and hands and eat and swallow and roll over in bed, we would turn carthweels! (And we'd be able to!) I wouldn't care if fireworks were coming out my ears! (Or any other location.)

These are not ALS symptoms you describe. If you don't have weakness after 23 months, please relax, see the neuro to find out what is actually going on, and count your blessings.

Good luck.

 

[GlenBrittle]

I do not think that could have been any more clearer.

Thank you Beth.

 

[Zaphoon]

I twitch, have weakness, atrophy and a distrubed gait and I do not have ALS. I have joy!

Zaphoon

 

[hopingforcure]

No Kidding Beth, if it does not quack like a duck and does not walk like a duck, it is not a duck.

 

[AndyDJX]

Bart--

Just to let you know, I wake up every single day with my pinkie and ring fingers totally numb and unable to completely fan out. It passes within a minute or so. I can't explain this symptom and neither can the docs, but I don't think it's ALS related.

Don't forget-- despite all of the medical knowledge and advances we've seen in the past century, there's still a lot of shit out there that we just don't know; things that doctors just can't explain.

But just because we can't figure out what it is, doesn't mean it's als. I'm almost 3 years into widespread and local twitching, atrophy and increased exertional weakness (otherwise known as fatigue.) No DX either, but I take that as a good sign.

Your GP has watered a seed in your brain that had planted there a long time ago. I suggest you go see a neuro, get EMGs and the whole 9 yards. But I also don't think you will trust your docs even if they say it doesn't look like MND. You don't listen to people on the boards or your doctors because you hold onto the possibility that it is MND. You are aware that people can be wrong, so you cling to that, instead of finding reassurance in the consideration that they could be right.

I can't lie to you, ALS is certainly a possibility, but I think it is far more likely to be something else; something you may never figure out. Try and retrain your brain to focus on the likelihood that it isn't rather than the small chance that it is. Give up on the internet and your doctors if they are not getting you any closer to being healthier.

 

[BarryG]

Andy, just to let you know I used to have exactly the same thing happening with my pinky and ring finger on my right hand. I went to my GP and he suggested that I should put a rolled up towel under my neck at night. I tried it and it really worked, no more numbness! Something about the angle of my head to my body and no support to my neck when I slept was pinching a nerve and causing the numbness. I cant use foam filled pillows (has to be feather) without using the towel.

 

[AndyDJX]

Thanks, Barry I should give that a try. Honestly it doesn't bother me much if it's not detrimental to my nerves and it's not indicative of a larger problem. Do you think it was associated with your ALS at all? I hope you are doing well.

Andy

 

[BarryG]

Andy, definitely not indicative of a larger problem and not connected to my ALS, just one of those annoying ailments. At least it is something that has a solution! Stay well,
Barry

 

[AndyDJX]

Cheers, Barry. Thanks. Even if I don't have ALS, I'm still pulling for you too.