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Scared about symptoms- please help

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Old 04-01-2015, 07:11 PM   #1
tony32jr
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Join Date: Apr 2015
Posts: 6
Default Scared about symptoms- please help

Hello. Ive posted this in the new member area also. any help/insight would be greatly appreciated.

Hi. Im a 36 yr old Male from NY. I seem to be in an ever growing group of people that are terrified of the possibility of having ALS. I just feel as though Im falling apart and I cant get any answers as to why.

Symptoms:
-Body wide muscle twitching since July '14
-muscle tightness/fatigued feeling in buttock, and outter shin (all right side) since sept. '14
-a weak/fatigued feeling in my upper right thigh since Oct. '14
-I woke up with a Loose/dropped shoulder (right side) on jan. 4 '15 and starting to notice muscle wasting in the shoulder blade area.
-I now have a sharp stinging pain behind my right heel when straightening leg and flexing my foot. (assuming from overly tight calf)
-and my shoulder/arm now gets fatigued quickly when carrying groceries etc.
-sometimes I get a numbing/tingling sensation through my bicep to the base of my thumb when my arm gets fatigued.
-occasionally when I swallow, I get a sore/tight feeling on the left side of my throat (which is strange because all of my other symptoms are on the right) It feels like a swollen gland almost, but my glands are not swollen.
-Basically anything I do, when Im done my muscles feel wiped out. (just on right side - shoulder, arm, hand, leg)

...obviously this all scares me and it seems like just when I start to deal with one of the symptoms another one pops up... like the shoulder blade area which is the really terrifying part. None of this has any pain. Just the uncomfortable feeling of tired and tight muscles and some popping and clicking of my shoulder.

Ive seen:
-my GP and chiropractor multiple times
-2 neurologists (one generally locally, and a neuro-muscular specialist at the University of Rochester NY)
-A physical therapist
-an orthopedic surgeon (just this morning)
all of which say they can not find anything, the orthopedic did notice "slight asymmetry" in the shoulder blade area

Tests:
-X ray of lower back (ordered by GP) *unremarkable
-extensive bloodwork (ordered by general neurologist and GP) *unremarkable
-upper & lower spine MRI (ordered by chiropractor) *mild arthritis
-Brain MRI (ordered by general neurologist) *benign cyst "that's probably been there my whole life"
-EMG of lower limbs and lower back, w/ 1 needle in my upper shoulder (by chiropractor) *normal
-Emg of upper limbs and neck (by general neurologist) *normal
-X-ray of right shoulder (by orthapedic) *noted excess bone matter in socket and is ordering a bone scan which I have not had yet,

No one has any answers and I just keep feeling that something is wrong and getting progressively worse.
The neuro-muscular specialist in Rochester assured me when I asked that it is not what I feared and that I have nothing to worry about. That was good enough for me, for about 3 weeks then I still feel like its getting worse. I noticed after the fact that he did give me a DX of BFS on my record but never mentioned that to me during my appointment. I know BFS is just that... benign. But it doesn't explain my shoulder blade area.

I know no one here can give me a DX or make me feel better, Im just curious if there are any ideas or similar situations others have been through. with positive or negative outcomes. Thanks for taking the time to read this rambling
-Tony
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Old 04-24-2015, 10:20 AM   #2
ATX_Man
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Join Date: Jul 2013
Location: Austin, TX
Posts: 42
Default

So you have seen a GP, 2 neurologists and an orthopedic surgeon and you still think you might have ALS?

I am no ALS expert but what you are describing does not sound like ALS.

It sounds like you might have had or had a pinched nerve in your shoulder... The other things might be because you are growing older and are not active. Trust me things state to creep up in your late 30's you never would have thought about earlier in life.

Take a deep breath and find a doctor you trust... Then trust them.

I also would recommend getting active and lifting weights... That way you can maintain muscle mass and actually have a good benchmark for yourself.
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"Thanks for this!" says:
tony32jr (04-24-2015)
Old 04-24-2015, 05:33 PM   #3
tony32jr
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Join Date: Apr 2015
Posts: 6
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Quote:
Originally Posted by ATX_Man View Post
So you have seen a GP, 2 neurologists and an orthopedic surgeon and you still think you might have ALS?

I am no ALS expert but what you are describing does not sound like ALS.

It sounds like you might have had or had a pinched nerve in your shoulder... The other things might be because you are growing older and are not active. Trust me things state to creep up in your late 30's you never would have thought about earlier in life.

Take a deep breath and find a doctor you trust... Then trust them.

I also would recommend getting active and lifting weights... That way you can maintain muscle mass and actually have a good benchmark for yourself.
Thank you very much for the reply. Believe it or not, I am trying to be reasonable with myself about this. It just seems that the symptom list keeps on growing and not getting any better. It also doesn't help when Ive seen/read many stories about others with symptoms similar to mine, are eventually diagnosed with that awful disease. The anxiety Im causing myself is a vicious cycle and I understand that anxiety (or what has now become almost like a serious phobia for me) is not making things any better. If these symptoms were more widespread I wouldn't have such a hard time chalking it up to anxiety. Its hard though, when it seems like the symptoms are getting worse. for example, and my right arm feels now feels the way my right leg did when this all started back around sept/oct. Its hard to get away from the idea that something is really wrong and the Drs are just not seeing it..
Im seeing the general neurologist again on may 1st and the neuro-muscular specialist again on aug. 5. I keep telling myself that hopefully after months of this stuff going on, if they still tell me Im fine I can move on...
Heres to hoping I can repost to this thread with "no news" after my appointments. Thanks again for replying to my anxiety ridden rambling.
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