Shaking muscles and second opinion

Status
Not open for further replies.

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
Hi there. I’ve been off for a bit but I chatted with my doc and had a question. My other thread was closed and I’m not sure how to merge the two.
I am 34 and have had issues that have kept worsening. I have one sided back atrophy and now wrist and shoulder atrophy. When I try to engage they shake uncontrollably. Even holding a hug, leaning resting on my arms, trying to flex, any movements and my muscles shake uncontrollably and give out. (My arms, mainly bicep/tricep more so than others) My doc said my emg a year ago was ok but all the other symptoms point to something sinister, making it all very confusing. He said he’s unsure of what its going on and with what’s happening with the progression of what I’ve been dealing with it makes it concerning. Has anyone else had the uncontrollable muscle shaking (aside from fasciculations, I still have those all over non stop as well.) And I’m thinking now is a time for a second opinion. Where are some knowledgeable places to go?
Thank you in advance for taking the time to read this. My family is a great support and we’re trying to see what we can do, we just don’t know best places to turn at this point.
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
And I meant to say it’s my left arm that’s giving me trouble. (My dominant arm, I’m left handed.)
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,228
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Past threads here for those who wish to comment knowing what has already been discussed:


 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,697
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
University of Nebraska medical center is in Omaha your stated location
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
I’m ok traveling somewhere and yes my doc that I see is at UNMC. Thank you Nikki
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Under the theory that it's orthopedic, not neurologic, you could see an orthopedist at UNMC or elsewhere. If you are looking for another center, UKMC or the University of Iowa are options.
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
Ok thank you! It would be neurologic
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You asked "Has anyone else had the uncontrollable muscle shaking?"
Answer - no.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There's no reason to conclude that you have any systemic neurologic condition, was my point. "Sinister" is a mouthful for your perceived atrophy/shaking without clinical loss of function, over more than a year. It doesn't fit the onset of anyone here.
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
Thank you for your response.
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
Is it possible the weakness portion of all of this could be your lungs? I’ve been having issues with drawing a full breath and being out of breath. Like noticeably, but I just kept pushing it off. I have to move or lean forward to try and get a full breath. Neuro made an appointment with a pulmonologist, but it’ll be a while before I can get in. Not feeling like you can breathe clearly is scary.
I also know an normal emg is good, but I’ve read and have a friend that had a normal emg and then a year and half later it showed the confirming results, is that rare that that happened to him? Or if your having internal issues like you’re lungs would it still show anything? I’m sad that that happened to him, and it concerns me for myself along with the fact that I continue progressing symptoms. It all just takes so long because every new doctor you’re referred to is such a long way out, and then you have to wait for the results, all the while feeling like you do. I’m sure everyone knows what I mean, and my heart goes out to everyone. You just wish you could get the answers/help right away.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,228
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi there-

While the members here are certainly sympathetic, this forum's purpose is to support those diagnosed with ALS and their caregivers. You've been here for 2 years and been very patiently and knowledgeably answered in the past about this really not looking like ALS. This has not reassured you, and there's really only so many ways the people here can try- almost 30 posts and you are still continuing to return. You need to be asking medical professionals what the meaning of your symptoms are and not strangers on the internet. Not because we don't care, but because it is clearly not within the realm of expertise of the folk here- nor does it do you any good to speculate (or ask others to speculate for you).

It's obvious you are struggling with anxiety about what your symptoms might mean, so it is really important you address that while you wait for your appointments with actual medical professionals. This is not a dismissal of your physical experience, but a recommendation you get a handle on what is clearly life affecting anxiety. Everyone deserves support, so I'd find someone qualified to lean on while on your diagnostic journey- which is really something the people here are not qualified to do for you.

Please take care.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,270
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Please stop. Go seek help and ask a qualified professional to look at the possibiliity of nosophobia disorder. Stop poking and taunting the members of this forum once and for all; it's cruel.

I sincerely hope you can find happiness and value the things you have in your life. Best of luck to you.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Truly, with all respect, you have overstepped your welcome now. Please stop - NO you do not have ALS. I feel that closing this thread would be a kindness we could do for you.
 

Jselliott07

Active member
Joined
Nov 26, 2019
Messages
30
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
I have confirmed areas from my neuro (along with soft palate weakness) but with my previous emg being ok they aren’t sure where that leads, so they’re referring me to als neuro in Kansas City for further testing/work up. I don’t think that I’ll update on here after that appointment because I honestly don’t feel welcome to on here. I know everyone’s symptoms and progression is different and unique, just because mine didn’t look like the norm shouldn’t discredit that. It’s kind of maddening that it takes a doctors words vs your own to give your symptoms credit, but I guess that’s how it goes sometimes. I wanted to express, my intentions were/are never to cause strife or annoyance or offense to anyone on here. If I did, I truly apologize, that was never my intention. I’m aware I’m coming from a place of fear and my thoughts and questions probably weren’t thought out as well as they could of been, I’m sorry for that. I wish and pray nothing but the best for everyone here and really hope and pray for a cure and treatment for everyone affected, and will do my part to fight for that.
 
Status
Not open for further replies.
Top