Various symptoms (belly, right leg, right arm)

[chris15k]

Hello Forum,

my Name is Chris. 31 year old German.

I've various symptoms and I guess it's ALS. What do you think?

My history:

OKT 2014
burning sensation in belly skin

NOV 2014
very strange Feelings in whole Body, sometimes like high voltage, especially in the night
unspecific coordination Problems in right leg, right leg is tired after a few minutes of running (doing a break help)
buttocks atrophy
weight loss
one day with extreme weakness and pins and needles in whole Body, since this day twitching distributed over Body (but allways same spots)
feeling weak and without energy in whole Body

DEC 2014
burning sensation in belly skin is gone, now feels like a belt around belly (high discomfort)
heavy forearms after resting
Little deforming of ellbows
Little muscle atrophy in whole Body

JAN 2015
Tremor in both Hands, stronger Tremor with weight in right Hand

FEB 2015
have feeling like whole Body tremor

No symptom is gone until now. Twitching is gone at some spots, at These spots muscle tissue seems to have changed in a more soft/jelly mass.

I had an EMG in DEC, brain MRI, spinal cord MRI - no findings. Slightly overactive Reflexes in both legs.

Organic Problems and cancer (endoscopies/mris/pet scan) and blood infections is excluded so far.

Liquor will be checked following week.

I've read sticky note and according to it it could not be ALS, because I can do everything, except playing Football or Tennis (because of coordinations Problems, tired muscles and low energy overall). Some Actions come along with more Tremor than before and a bit Dragging pain in right leg. No sensitivity issues.

The biggest Problem is the belly with the discomfort feeling of a belt and high pressure because of bloated bowels. Before OKT I was completely healthy and since OKT it goes rapidly down. Loss of energy, Need much more sleeping time. I must have a big disease.

I guess it's ALS. What do you think? Can ALS start with such complexity of symptoms without a real paralysis?

Thank you.

Sorry for bad english.

Kind regards,
Chris

 

[GregK]

You read the Sticky but still primarily used "feeling" to justify your self- diagnosis.

To quote one of our other members: ALS is about failing, not feeling.

The EMG is the gold standard; yours was "no findings". A clean EMG rules out ALS.

 

[chris15k]

Greg, thank you for reply.

I don't want to start a long thread with contradicting experienced users. There a enough such threads without any benefit.

So I try to ask a few hopefully interesting questions, also for other users:

Are there People diagnosed with ALS who had some kind of kick-off sensation where whole Body was crazy for 1-2 days?

Are there People diagnosed with ALS who have Little dragging pain or mostly just weakness until paralysis, even when disease expand to the next area?

I've a lot of very strange feelings in my body ("extraterrestrial"), rather than real clinical weakness (so far). Does this Point away from ALS?

I hope These questions will not bugging experienced user. Thank you!

Kind regards,
Chris

 

[ECpara]

Chris, I will answer your questions by comparing them to my husband's experience.

No, he never had any "kick-off sensation" nothing crazy for 1 or 2 days. ALS is an ever so slowly progressive disease.

No, he never had any "dragging pain", actually never any pain at all. His weakness only came after his muscles began to really atrophy, over years, not at onset.

He's never had any "strange feelings". I'm repeating GregK, as well as the sticky.....ALS is about failing, not feeling.

Your clean EMG is the real key. No ALS. Congratulations for that. I hope you find answers to your problems. Good luck!

 

[chris15k]

Thank you for answers.

I cannot believe it, because symptoms are so strong and there less space for other causes.

According experience users here it would be a very uncommon ALS, because all Problems started in a time period of 4 weeks (toros, abdomen, legs, arms) and progressing slowly since OCT 2014 and there was a two day sensation with extreme feelings.

Time will bring answers. Tomorrow Liquor check and hopefully another emg.

Keep you updated and pray!

Best wishes,
Chris

 

[lgelb]

The rapid progression and intensity coupled w/ neg scans/endo could suggest tick- or other insect-borne illness if not considered already. Based on what you have reported, ALS is a less likely cause.

 

[chris15k]

I'm in a terrible Situation. I'm very sure I've ALS. The symptoms are so clear/strong and there is no other cause. It's crazy.

I'm in a normal Hospital in Germany and today's EMG (lower limbs, right arm) was clean.

I don't know how to make the doctor believe me.

The most progressed symptom is with my belly muscles.

My belly is Little bloated and hangs down. When I'm sitting and turn to the left or right the lowest rib bone touches my pelvic bone. The belly area seems to have shrinked. My belly muscles seems to be destroyed.

Can the doctor do a EMG of belly muscles and should it be positive in case of ALS?

Please try to help me. Sorry, I'm very desperate.

Best regards,
Chris

 

[Nikki J]

Yes I suppose they could EMG abdominal muscles if your condition somehow warrants it. From everything you said it does not. Everyone here has given their nonmedical opinion this is not ALS. My best advice to you is to listen to your doctors, do not insist this is ALS. Say instead there is something wrong, I have xyz symptoms what could it be and how can we find out? Good luck in finding an answer but I do not believe you will find it here

 

[GregK]

I'm very sure I've ALS. The symptoms are so clear/strong and there is no other cause.

They may be clear but only in _your_ mind. Between this forum, your doctors and you, _you_ are the one with the least knowledge of als.
You've had 2+ clean emgs.
You've been told no als by doctors.
You've been told "doesn't look like als" by 4 forum members.

There's no surprise that the doctor doesn't believe you because you don't have it. We're not going to help you convince your doctor because we don't believe it either.

You may have something but there's a good chance you have a mental issue called health anxiety. Work with your doctors.

You don't belong here: you don't have als. Rejoice.

 

[skipper66]

Agree with Greg and everyone else who answered you. You don't belong here.