Shaking muscles and second opinion

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Nikki J

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It would be good to return with your results. Otherwise I see no point in your post other than venting ( in the non ALS sense). people expended a good deal of energy answering you. Unfinished stories breed anxiety here as I am sure you realize
 

lgelb

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Likewise, I hope you return to close the loop. I also hope you realize that doctors are human and if you persist in asking for a referral, they will often give you one. That does not make the circumstances worse than they were last month. Nor do we discount what people self-report, as we have certainly advised many to proceed with medical careseeking from their stories.

What we have said to you is that we don't see ALS in your story, and I'm sure you hope that is true as well.
 

Bestfriends14

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Yes, I will third the request for you to post your conclusion/summary portion of your EMG when you get it. I'm sorry you did not feel welcomed here, but there is only so much reassurance folks can give you before it becomes a cycle of going around and around and around. That only exacerbates your stress and upsets the forum members who are dealing with so, so much as it is. Again, please come back to close the loop. It really does help other DIHALS posters to see what the outcome is.

Take good care
 

TippiLeigh

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@Jselliott07 there was a question you asked that nobody answered...about your friend. It’s not that unusual for people to have a clean EMG and then subsequently have a dirty one, especially if they start off upper motor neuron dominant. (Because it’s LMN damage that gives you the definitive ALS diagnosis. Everything else is more on a spectrum, like PLS.) The more people you meet with disease, you’ll see that no two are alike and everyones’ presentations are very different.

I’m sorry for what you’re going through. For what it’s worth, It doesn’t bother me at all to see people come here asking for help and questions. It doesn’t bother a lot of the members. (I talk to many outside of here) They’ve just stop commenting here because it’s too triggering and upsetting to see the seasoned members beat up the people asking questions. So I apologize on behalf of those of us that aren’t OK with the type of gross and demeaning comments you were getting. You’re a human and nothing in what you wrote seemed like you were some troll trying to come here and bother dying people. You didn’t deserve that. Hang in there and know there are people that actually care out there and I do hope you get some relief from your symptoms soon.
 

Clearwater AL

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Get Real
Tippi, he has been asked several times to post the Summary/Conclusion of
his last EMG.

Until then... there's not one more answer or suggestion any
MOD, PALS, CALS, PLS can contribute... going on to this third thread.

Jselliott,

"It’s kind of maddening that it takes a doctors words vs your own to give
your symptoms credit."

Yes, when you're suffering from Health Anxiety over current physical
complaints can be maddening.

No one here wishes to be stern with you but after 3 Threads trying to
be helpful has run it's course... until you post the Summary/Conclusion
of your last EMG.

PS. Just a reminder... your first thread started Aug 3 2020, closed
Aug 4 2020. Your second thread Oct 30 2020, went three pages,
closed Jan 2 2021 with a last sentence...

"That means getting help on the ground for your anxiety about a disease you don't have."

I hope you find the path to go and live a long happy life, 34 more
years and more.
 
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rmt

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@Jselliott07, I read through your old posts to get the full picture of what you are going through. I'm not a doctor, so I don't have any medical advice other than to keep talking to your actual doctors. But I do note that in this thread you make it seem like your EMGs were all normal, but in December 2020, you wrote that your EMG was abnormal and they found "left ulnar neuropathy and L5 radiculopathy that weren’t on my previous emg".

I have no idea what that means, but I know it isn't because of ALS. Maybe whatever is causing this new neuropathy and radiculopathy is causing your other issues too? I work with computers, so you don't want medical advice from me. But I hope you do continue to work with your actual doctors to help you feel better (both mentally and physically).

I'm sorry you don't feel welcome here, but I'm not sure what you are hoping the people here will say. If somebody here said they thought you had ALS (clearly they don't), would that somehow make you feel better? When I started coming to this forum, I desperately wanted people to tell me that I didn't belong here. I would give anything to not belong here. You certainly have something going on, and you should keep working with your doctors to find out what that is. But not belonging here is the best gift you could get.
 

lgelb

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Very well said, rmt. I hope JS and others take your words to heart. The people we tell not to worry about ALS (and to seek help if worry is all they can do) are hearing good news, not being victimized, and it's bizarre to think that we have any vested interest in turning away P/CALS.

Most PALS do not in fact present as upper motor neuron dominant, so for the vast majority, a normal EMG means no ALS. For those who do present with UMND, there are distinct symptoms, well beyond the negative finding of a clean EMG.

But to anyone who thinks "seasoned members" [not a label anyone here sought, assuredly] are churning out "gross and demeaning comments" to keep traffic down, please feel free to find a resource that better suits.

Ulnar neuropathy is second only to "carpal tunnel syndrome" [wrist nerve compression] as a common upper extremity issue, in this case a compression of the ulnar nerve (which runs from the neck down to the fingers) that is very treatable. People whose upper bodies are frequently in a fixed position, whether at a desk or gardening, often run this risk. It's estimated that 40% of adults with no symptoms have ulnar nerve compression at the elbow. It's a delicate spot for nerves.

Radiculopathy is an umbrella term for a compressed nerve somewhere in the spine, that again is very common, often associated with bone spurs, obesity, disk problems and the like. PT and sometimes meds are usually all that's needed to help the pain, numbness, tingling and other discomfort that may result. 3-5% of adults (including me) have lumbar radiculopathy, which is just one type. So also very common.

Not seeing progressive conditions on last year's EMG means nothing.

Many CIBALS posters have one or both of these. They are not related to ALS, which is not caused by a mechanical compression at all. Stretching every day in the morning, including range of motion exercises for all the joints, is recommended for everyone who is able. I believe that some kind of daily skeletal extension such as with walking, swimming, Pilates, tai chi, ballet, classical stretch and many more also help in prevention of/slow progression of compressed nerves.

Best,
Laurie
 
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