Muscle Biopsy and EMG

Status
Not open for further replies.

Cmishh

Member
Joined
Oct 6, 2016
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MI
City
Detroit
Hello again all and thank you for taking time out to read this. I have been on this journey now for quite sometime and every now and then I get pulled back into fearing what really is going on with me is ALS. I recently saw the Neurology department at the University of Mich trying to get an answer to what has been a few years of progressive muscle fatigue and what now is virtually all over body aches and pains. I have been tested for many things autoimmune, Lyme etc and nothing has turned up. But I have gotten to a point where I can barely work, can’t stay upright for long periods of time etc. I had genetic testing done for Muscular Dystropy that came back with something, however the muscle biopsy they did ruled that out.
So my question is this, I had a clinical exam and normal EMG but the muscle biopsy did show chronic and mild neurogenic changes that listed a slew of things it could be attributed to one of which is MND. Based on the normal clinical exam and EMG they did not seem all that concerned but wanted me to come back in a few months for follow up. I have since also noticed muscle loss on the leg where they did the biopsy, my primary care doctor says this could be normal from having muscle cut into. None the less I am here and worried that what is really happening with me is motor neuron disease. Is it true to say that a normal EMG and clinical exam and all over muscle and body pain would point away from MND? I’m sorry, I’m just sometimes at such a loss as to what is happening with my muscles and no one can ever seem to give me an answer.. I know ALS is a diagnosis of elimination my concern is that lots of things have been eliminated now doesn’t that leave AlS on the table? Any feedback is Welcomed and thank you taking the time to read this.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,318
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I'm sure more knowledgeable folk will chime in shortly, in the meantime I am posting links to prior threads/discussion so your full history is easily accessible:




 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
977
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
To quote your last post in 2018:
" I’m sorry to all of you. I will not post anything again. Please close this thread or delete it.
Sorry again.".

Please go get help for your health anxiety and your nosophobia disorder. You don't belong here and you know it. I'm not sure if you get bored or what and decide to post the same question on this forum every year, or you truly have an unfounded fear of a disease you so obviously don't have. Whatever the reason is, to spend nearly a decade obsessing about ALS requires a deeper look at why you cannot let this go.

Best of luck to you. I truly hope you can find happiness and a more healthy way to spend your life. Life is far too short to waste it as you have been.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,971
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
If it were me, I'd go to my primary care doctor with all my records and a list of my symptoms. Then I'd do what the doctor suggests.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,886
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You are correct. All-over pain and a normal exam and EMG say "No ALS." The "diagnosis of exclusion" thing only applies if you have clinical findings that you don't have. There has never been and still isn't any reason to worry about ALS in your case.

Health anxiety is its own serious condition. That you know you have it says you have tried to get help. If at first you don't succeed, it's worth trying again. There is effective treatment.

Best,
Laurie
 

Cmishh

Member
Joined
Oct 6, 2016
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MI
City
Detroit
I’m sorry, I just have been living like this for so long now the pain, twitching, fatigue, memory issues etc. Yes I have a history of health anxiety and I don’t know why I keep coming back to this fear of ALS.. it could be that I know I’m sick with something and it feels like it has to do with my muscles and no one has been able to give me any answers. I don’t mean to waste anyone’s time, I really don’t. I’m in pain both physically and mentally and I’m grasping at things. Again I’m sorry, I appreciate the feedback.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,689
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You wrote: "I had a clinical exam and normal EMG but the muscle biopsy did show chronic and mild neurogenic changes that listed a slew of things it could be attributed to one of which is MND. Based on the normal clinical exam and EMG they did not seem all that concerned" notice it could be due to a slew of things. The doctors were not concerned.
But you are back at it.

Please if you can't let this go, continue on it with your doctor, being here is not appropriate in the least.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,810
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Cmishh, As Igelb suggested... try and get help again for your anxiety.

When you do, and please do, you may address this form of Anxiety

Social Phobia Anxiety is fear of being negatively evaluated against what
they believe they suffer and have shared with others (Internet).

Being that you wrote...

"... no one has been able to give me any answers."

Maybe you were getting the answers...
 

Cmishh

Member
Joined
Oct 6, 2016
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MI
City
Detroit
I definitely agree with the anxiety issues and that I have And I am working on them, but one thing that brought me back here was the results of the muscle biopsy I had done that mentioned the changes and MND being a possible cause. It freaked me out and the fear got the best of me. Thank you again for the feedback, it is appreciated
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
977
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
There's absolutely no reason, biopsy or otherwise, that you need to come back here going forward. You've been cleared multiple times of ALS over many years, so a muscle biopsy is irrelevant. Good luck to you in your life. Please go get help.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,348
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I understand how frustrated and concerned you are your symptoms and emg say no ALS and then you get a test that listed it in your differential. It still doesn’t seem like that will be your answer but I would be scared too.
you are being seen at U of Michigan which is great. Please keep working with them. It sounds like you are one of those people who are hard to diagnose and it is important to be followed by the same team. Keep communication open with your doctor and let us know when you get an answer

good luck!
 

Cmishh

Member
Joined
Oct 6, 2016
Messages
12
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MI
City
Detroit
Thank you Nikki, I appreciate you understanding. Take care.
 
Status
Not open for further replies.
Top