Need assurance and guidance

[concernedman]

Hi guys,

its me again. Im sorry for writing here and I know I should not be lurking here since Im most likely not belong on this site.

But I do have some answers I would like to ask you about my current status, and I really hope that Im not disturbing or offend anyone by doing this but my body is no really cooperation with me.

OK - as you know my story began in October 2016 with back pain.
January 2017 the twitching started, first at one place but was followed as widespread.

Run all different blood tests, all clean. Run my first NCS and EMG by September 2017, all normal (just some fasciulations according to the neuro). Did Clinical exam with neuro in November 2017, all good except for brisk reflex in my right knee, but he told me not to bother.

Then I did my second EMG in May 2018, nothing changed since the first EMG according to the neuro and it was done at another hospital.

All good I thought and really tried let all the focus on ALS to go away but still I can not let i go since nothing has improved at all, but in the same way not getting more bad, as far as I know.

So here I am - still having widespread twiching over my body but in specific places, mostly around my knees, elbows, thighs, calfes, back and throat.

Its only my right side (dominant) that is "affected", my upper arm/shoulder feels weaker than my left, and exactly the same feeling with my right side leg, especially my thigh.

Confirmed "withdrawed" (as the physios says) muscles in the right side of my arm/shoulder/cheast, by two different physios. Have been working with them for months and no improvements at all, they are confused.

Strange feeling in m right side of tounge, I often biting myself when speaking and "slurring" occasionally (only noticed by me). Dizziness during the days.

Nothing showed on EMG, NCS, ultrasound of shoulder, brain MRI, MRI of the whole back, and x-ray of my back. Seen to neuros (the last a saw in december 2017)

No problem with standing on heels, walking on my toes, use buttons on shirt, take to steps at the time in a stair (even though Im getting more tired in my right leg) and so on.

So im stuck in limbo and this is making me falling back in this horrible ALS trap. Do you think I should go back once again? Is that necessary? Im thinking that IF it really was ALS, I would be "weaker" then Im describing, right? Or could it be that there actually is someting?

Thanks for reading, and please feel free to reply. That would be much appreciated!

Have a nice evening to you all.
Best regards,
Peter

 

[ShiftKicker]

Mod note- past posts here:

https://www.alsforums.com/forum/do-i-have-als-als/41738-update-symptoms-since-oct-2016-a.html
https://www.alsforums.com/forum/do-i-have-als-als/40604-update-worrisome-progression.html
https://www.alsforums.com/forum/do-...ymptoms-getting-worse-please-some-advice.html



You're right- if you had ALS, you would have been affected more profoundly by now. As the people here can't examine you in person, you need to go back to the doctor and keep trying to find the source of your symptoms. A fixation on ALS might not benefit you though- there are many other things that it could be. The only way to find out what can be done, or find the reason for your symptoms really is to work with your doctor.

 

[Vincent]

So you have been coming here for 2 years with no symptoms of ALS. You have opinions from neurologists stating no ALS. Now here you are again hoping to be diagnosed with a fatal disease by random strangers on the internet. Let that sink in for a couple of minutes. It kind of sounds nuts doesn't it. That's because it is. People on this sight are in the process of dying, myself included. We really don't have a lot of time or patience for massaging your neuroses. Please find some other hobby. You are free to go...
Vincent

 

[concernedman]

Hi ShiftKicker, hin Vincent and thank you for your replies!
As I said earlier - sorry if Im offend anyone by pistong, its not my intention.

However - Vincent youre right. I know i shouldnt lurking around here anymore but since nobody is able to find a reason to all the symptoms I end up back here.

ShiftKicker - when reading your answer Im not sure if youre saing that ALS should not be excluded from the list at this point when youre saying that there could be other things causing the symptoms? Not sure if I got this right?

What concerns me is of course that the symptoms including both upper and lower motor, and only on dominant side and includes twitching.

All the best

 

[ShiftKicker]

No ALS. Please stop listing more symptoms. See your doctor to help you figure it out.

Hope that's a bit clearer.

 

[concernedman]

Hi!

Ok - I hear you.
still have some questions though:

Started with twitching in beginning of 2017, first big twitches but has changed character and is now fine twitches in the same areas as in arm, shoulder, hip, thighs and calves.

”Weakness” - not clinical according to two neuros. But in the same side, right dominant. From foot all the way up to the neck but started in shoulder. Confirmed withdrawed muscles in shoulder acco. to physios.

This is the part that makes me scared as hell since I think it followes the pattern from all I have read on this forum.

Whats reassuring is that even the weakness I can still do all daily business like before, allthough the weakness in arm and leg is there all the time and I can still exercise a couple of Times every week including climbing. Ut I fel my right side of the body is runnit out of muscle power a LOT quicker that on my left side.

I guess, given the time of nearly 2 years, I should be worse that today, right? Like disabled to do stuff, not only experience weekness?

I also have 2 EMGs that where normal exept for some fasics according to the neuros.

Thanks
All the best, Peter

 

[Nikki J]

Peter you have been told again and again what we think. It doesn’t sound like ALS to us and I don’t see “ a pattern” that sounds familiar. More importantly your doctors said clean EMG and no ALS.

Please stop asking here and ask your doctor instead. If you want our opinion go back and read what was already written

Good luck

Closing thread