new member - any insight 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.
...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

Welcome tony32jr. :Wave-Hello:

Hi Tony,

Welcome to the NeuroTalk Support Groups.

I really have nothing to suggest but did notice a couple of things including these below...

I take it you mean the feeling is inside your throat rather than on the outside of your neck. You say your glands are not swollen so I was just checking. Thyroid function has been tested and is good?

Did the doctor say what type of cyst?

I'm really sorry that you are having difficulty finding answers for your health problems.

Thanks
 

Thank you for your time, help and interest in my situation. I appreciate it. Unfortunately thyroid as the first thing my GP checked for and it was normal. Yes the occasional swallowing thing feels as its in my throat. Like a swollen gland but my glands are not swollen.

No the general neurologist I saw did not give me any details of the cyst. He just said it was benign and probably there my whole life. He also said it would not be causing the symptoms Ive been experiencing.

Thanks again.

Nice to meet you!!