Please help!! My body is failing me, desperate, bad symptoms progressing and now affecting my face!

Status
Not open for further replies.

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
979
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Unfortunately, until you have your EMG, there's no point in letting yourself fall to pieces. To me, and my experience with many, many ALS individuals, your symptoms are not suggestive of ALS at all. What day is your EMG? If they find something sinister they typically let you know ASAP.

I truly believe they will not find ALS; it just doesn't match up. If they tell you no ALS, will you believe them? I hope you do so you can continue down a more productive path of finding out what is going on.

Please update when you get your results
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
At Mayo, the NCS of the test is done by a tech but the EMG is done by a highly trained neuromuscular doctor who specializes in EMG. All they do are EMGs. I've had several done at Mayo and they are all the same. Before the first part, they will warm your hands and feet with hot blankets. They do a very thorough nerve conduction study and the EMG doctor reviews it before doing the EMG. After the EMG is done, it will be analyzed and given to your neuromuscular doctor. Every time I've gone to Mayo, my EMGs were done by doctors specializing in only EMGs and they are different doctors than the one I saw for diagnosis and treatment.

None of them took their hands off the needles. If they see gross irregularities, they will probably test more muscles than if they don't. Some of them give you immediate feedback and some do not.

They will know exactly what muscles to check based on your clinical symptoms and their observations during the test.
 

aschatzman

New member
Joined
Jun 16, 2016
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
VA
City
Ashburn
Hi all, it has been a rough few weeks. I went through some testing at Mayo and saw a Gen Neuro and have to go back. There was some difficulty with the EMG test because some of my muscles were too weak for the part where you push down after insertion and want to redo it.

Symmetrical Hyperreflexia of upper extremities and patellas was noted, is this a bad sign? it’s new for me accompanied with all these other symptoms. Reflexes were always normal or almost non responsive before all this.

My hip/pelvic/glute/thigh atrophy (esp R side) is getting worse! and making it so hard to walk or sit. It's so darn uncomfortable and upsetting to look at.

Also facial & abdominal weakness continues. Lower back pain started full force.

Constant shaking in fingers from what appears to be weak wrists. Legs continue to shake with minimal exertion.

Fasciculations have gotten worse, constant and all over from waking to sleep. Today alone, the side of my foot has been going non stop since I woke up and the stronger ones moves my big toe.

Constant twitching in other muscles at the same time. If that has been going non stop for a few years and getting worse as weakness progresses, this can't be a good sign? Benign should come and go or at least not be constant, worsen or be accompanied with weakness and muscle loss..

I also don't understand why constant muscle twitching wouldn't be picked up on an EMG but sounds like they have to insert near the twitching muscle.

This all doesn't look good that I am getting weaker and more atrophied. I don’t even recognize my body physically or how it feels and works any longer and mentally I am in a downward spiral.

I met a couple recently who knew of others with ALS, saw me and said my symptoms mostly match, I'm very worried. A few Dr's have also noted EMG can miss in early stages but should show with frank muscle weakness and loss, but could I be the exception for the few who don't have flashing EMG tests right away, especially if Dr's don't see this muscle loss as significant as what I am experiencing. I have put on a few pounds of just fat and they see this along with my age.

Thank you
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,329
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
There's not much this forum can help you with at this point with regards to diagnosis. It sounds like you are seeing the right doctors and undergoing tests that will help direct your doctors' and your next steps. Please let us know exactly what your doctors tell you along with any documented test results, as it is not a good idea to ask strangers to speculate based on your subjective reports here.

All the best
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
There was some difficulty with the EMG test because some of my muscles were too weak
When I had my EMG, they tested and found significant denervation of muscles that were already nearly paralyzed, so it’s simply not true that the muscles can be “too weak” for the EMG to be accurate. They also found abnormalities consistent with ALS in areas where I had normal strength and no symptoms.

As symptomatic as you say you are, your EMG would have been flagrantly abnormal in multiple areas if you had ALS.

We’re happy to take a look at your EMG if you want to post the results, summary, and conclusions (be sure to black out any identifying information).

I’m sorry for your symptoms and hope you and your doctors can get to the bottom of this soon. But the good news is you don’t appear to have ALS.

We will keep your thread open so you can update after your followup appointment(s). But until then, there’s not much more people here can tell you.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Your EMG interpretation will immediately appear on your portal. At the bottom, it will show a summary. Feel free to post the summary as it is usually very thorough and prepared by an EMG neurologist. It's not unusual for Mayo to do several EMGs because there are so many conditions that cause irregularities. If ALS were on the table, the general neurologist would immediately refer you to a neuromuscular doctor. That's what they did with me.
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
979
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
When my husband was diagnosed with ALS, his foot strength was 0 out of 5, which means a completely dead set of muscles. That foot was tested and it showed ALS so, like your symptoms, your theory of "too weak to test" when it comes to ALS, does not match up. You symptoms simply do not add up to ALS. I am not sure what you are looking for on an ALS website because you really do not present as someone who has it, however, please do show the summary of your EMG and perhaps light can be shed on a more appropriate forum for you to peruse. Of course, forums will never replace the knowledge and advice of a medical professional.
 
Status
Not open for further replies.
Top