Need some advice

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masonmichael201

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Not the best writer so I’ll keep my wording direct.
-Shortness of breath since 02/2020 comes and goes
-Dry eyes and weird vision since 03/2022 also can’t seem to breathe through nose like I used to
-I felt really confused and slurred words for a few days last month but will say I had pretty much stopped my testosterone therapy
-As of late I always feel like I’m swallowing air.
-Went to Emergency room for chest pains on 04/7/2022 and they gave me Atorvastatin. I took three 80mg pills total while also being on omeprazole ( for last year) throughout that week, on day five got strep throat and both lower legs got week.
- Have leg muscle weakness since second week of April which spread to my arms within a month
- CK total was slightly elevated in April but tested in normal range 2 weeks ago
- Feel weak all over but atrophy only in my right leg (calf) and right bicep won’t grow.
- Got Mri of brain and cervical spine last month and told to be normal
- I was terrified but went for EMG and Nerve Conduction test yesterday and was told everything looks normal.
- I am confused because I thought for sure the nerve conduction or emg would confirm my diagnosis or at least point to something.

Thank you very much,

Greg who is really concerned
 

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Hello-

I've moved your thread to the correct subforum, as it sounds like you expected to be diagnosed, but you have not actually been diagnosed with ALS. I have also changed your status from PALS to "Learn About", as it is incorrect to state you are a person with ALS.

We ask that all new members looking for answers read here: Read Before Posting to make sure their questions have not already been answered or if their subject of inquiry has been covered there.

What you have listed in your post does not point to ALS, as you will read in the linked post. Have you been provided feedback by a doctor that MND/ALS is on the table? If so what are next steps?
 
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affected

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Sorry to hear you have been going through these things for some time now.
It certainly did not sound anything like ALS, and all testing supports this.
What do your doctors suggest is the next thing to investigate?
It sounds more systemic than neurological, but I'm no doctor.

I hope you find answers soon and can return to full health.
 

masonmichael201

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I have been the one to suggest this to my doctors. Neurologist yesterday said he does not believe I have ALS but he did refer me to a neuromuscular neurologist.
 

ShiftKicker

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Hopefully you will have some more insight once you've seen the neurologist. As you will read in the link provided, nothing you state points towards ALS but towards something else.

All the best
 

lgelb

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As you have read, Greg, nothing you have said points to ALS, nor, really, to anything neurological. If you have not seen an ophthalmologist for the vision issues, I would certainly do that, and I would also stay connected with a good internist who can monitor whatever weakness or atrophy you may have.

Best,
Laurie
 

masonmichael201

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After reading responses I decided to read my initial post and see if I missed anything. I first would like to thank the people that responded you probably know what it means to me since you are experienced with this disease. It feels like my throat is closing up and I cough quite often. I’ve had severe leg weakness in both legs with tremors throughout my whole body. Atrophy in my right leg and my right bicep won’t strengthen whey I lift some weights. I’m sorry to be repeating some of my previous statements but I’m really confused that the Emg and nerve conduction test yielding nothing especially since they tested my muscles that are giving me trouble. I certainly don’t want ALS but not sure what else this could be? Am I losing it here?
 

Clearwater AL

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Greg, from one of our extremely ALS knowledgeable members…
“Greg, nothing you have said points to ALS, nor, really, to anything neurological.”

Then from a highly trained and educated neurologist… (you're not.)
“EMG and Nerve Conduction test yesterday and was told everything looks normal.”
Key words… was told everything looks normal.

I’d believe that may have also been his opinion concerning atrophy which
part of the primary lead to an EMG.

Generally we recommend a second opinion when someone has been
diagnosed with ALS but...

What will it take for you to let go of ALS? We’ve seen it before… another
neurologist, another clinical exam, another EMG (some going for three).
I’ve commented before… they must have fantastic health insurance.
It's up to you.

Work with your doctors… hope your issues get resolved and you can go
forward to a healthy life.
 

ShiftKicker

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Backing up what Al says- you need to work with your doctors. The folk here would not disagree with the medical experts and test results, nor do the whole (you have to look at all symptoms together, not just singular ones) of your reported symptoms sound like a pattern that would cause a doctor to think ALS. What they might indicate is up to your doctors to untangle- so you would be better off asking them what your symptom pattern might mean.
 

affected

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I think you have had a full quota of senior members here say not only do your symptoms not sound like ALS, they don't even sound neurological.

It is always best to let your doctors decide what paths to take in testing and diagnosis as you could well be steering things in a totally wrong direction and slow down finding out what is going on. That's over and out for us really as we only deal with ALS here. Let me finally add that being told this is the very best news you will ever get in your life!
 

masonmichael201

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I have one question. If someone potentially has Bulbar ALS but the disease has progressed to lower limbs like calf and bicep will a clean emg be sufficient if only muscles tested were the right leg, and right arm? Or do I have to go back for bulbar muscle emg?
 

Nikki J

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You are hypothesizing that you have bulbar ALS and that your leg and arm weakness is something else? That is not logical is it? You were emged in symptomatic areas. Weakness and atrophy are lmn signs if they are due to ALS. Your emg was clear , therefore you need to work with your doctors to find the cause of your symptoms
 

Bestfriends14

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Yes, your EMG sufficed for bulbar. The thing is, you don't evidence bulbar onset whatsoever, so your question is moot. For whatever reason, you've glommed on to ALS and you're directing medical professionals to look for a disease you show no signs of. Why on earth? Perhaps it's most healthy for you to accept this news, move on from ALS, and continue to work with your docs.

Good luck to you.
 

Clearwater AL

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Greg, you haven't indicated how old you are. I'd guess you're young.

I've been known to be blunt.

You seems to appear you are chasing a diagnosis of ALS regardless to
what you've written... " I certainly don’t want ALS but not sure what
else this could be? Am I losing it here?" Kinda... yes.

With all the neurological exam, tests, and a clear EMG and the
extremely ALS knowledgeable member replies... What in hell for?

Really, people with ALS would have loved and been overjoyed to
have gotten the great news you got... You've been cleared of ALS.

Please let go of ALS, work with your doctors to go forward (saying again)
to a normal healthy life... it's there! Go for it!
 
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