Well...I guess its time I asked for help.

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BlueSkies21

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Alright I'm back needing more advice. I applied to the Mayo Clinic, and immediately got denied. I called and asked if there was any more information on the reasoning for that decision, or a way to appeal. No to both. Wont give me a reason, wont let me appeal it. Went back to my GP and told him what happened. He couldn't believe I got denied with everything going on. So he wrote a referral to a different Mayo. After a week of waiting, they informed me I was denied again. I am beyond frustrated. My life is being destroyed and no one will even see me.

In the meantime, since last time I posted:
-My weakness has progressed in my entire body. Walking has become more difficult, squats are extremely difficult. My arms can barely stay up, I cant even hold my arm up to turn off a light switch without my arm shaking and quivering like crazy.
-My throat is terrible. It feels like the back of my throat is collapsing and hanging down. It also gets very dry, and I spend most of every day feeling like something foreign is in the back of my nose. The more I talk or the louder I talk, the worse it gets. It gets sore and painful every single day.
-My speech is transitioning from stiff to sloppy. When I speak fast or loud, I start to sound like Daffy Duck, and I cant help it. Not good.

So...does anyone have any advice at this point? I'm continuing to get worse and I cannot find anyone that can help me. I have just a few weeks of leave left before I lose my job (which at this point is the least of my problems), my mobility is being effected, and no doctor seems to care.
Can anyone recommend another clinic or high-profile neurology dept that can actually help me?
 

Foodie1

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Dr. Robert Brown at UMass in Boston is regarded as one of the best ALS doctors in the country Let alone the best bedside manner. His assistant is named Beth. Call her and tell her what is going on 508-334-5989
 

lgelb

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If your PCP believes you should be seen at a neuromuscular center (have you been to one in Denver?) , I would think he could help you with an appropriate referral to an academic neurologist with the connections that you need. Generally, you need a neurology referral to a neurology center of excellence. That's true whether it's Mayo or anywhere else.

It is hard to understand why none of the neurologists you have seen would assist if there is clear need. I presume infections, endocrine disorders and cancer have been worked up as possibilities?

All I can say past that is that I'm still not seeing ALS in this picture.
 
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Clearwater AL

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Blue, just a thought... as you wrote....

" And every doctor I've had experience with so far doesnt seem to know what's going on,
and worse, they don't seem to really care."

Your perception and maybe theirs because... they don't see ALS. (Two clean EMGs.)

As the same for Mayo.

You can continue to "Neuro Shop". But as you've been told above... twice,
"There's no evidence that ALS is on the table."
"I'm still not seeing ALS in this picture."

I hope for you... some doctor helps you onto a more curable healthy life.
 
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rmt

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Have you had blood tests for myasthenia gravis (including the less common markers), vitamin levels, etc? I'm assuming that was done but I don't see that in your comments.
 

BlueSkies21

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Foodie, thank you I will see if I can get in touch with them.

Igelb, yeah my PCPs and Neuros have all expressed that I should see a neuromuscular specialist. I do have an appointment with a specialist in Denver, months from now (the wait time to see them has been unbelievable). My concern is that the process with them is going to draw out forever, and I dont have time to wait for my job, mobility, speech to be lost. I'm hoping to go somewhere where the doctors will do whatever tests and evaluations are necessary to just figure this out. I'm afraid that the process in Denver will be just like what has happened so far. They will tell me something is wrong, and tell me to schedule testing and more appointments (which will take more months to get done), and in the meantime I am just getting worse.

Clearwater, I wish that was the case. One Neuro told me my issues could be consistent with ALS, but she was confused as to why I havent totally lost function in something (yet). Which is indeed a valid question. The second Neuro brushed me off without doing a clinical exam or much of anything and said I need to see a Neuromuscular specialist. Which I'm trying to do as soon as possible.

Rmt, I've done a ton of bloodwork, including the blood test for MG (3 times), nothing comes up.

I just dont understand why I'm getting worse, I'm in pain, I'm losing speech and mobility, and I cannot get help. I feel like I'm drowning and these doctors wont throw me a line. I think it would be a good idea to do a spinal tap, genetic testing, a repeat EMG (my last one was 7 months ago and I have substantially worsened since then). But instead I get a pat on the head and I'm told to go see someone else.
 

Clearwater AL

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Blue, seldom are Neurologists "confused" when it comes to ALS. You've had two
clean EMGs. They may be trying to direct you to where you may find help...
for something other than ALS! You should too.

I've posted this before and I do for others.

Below is a list of early symptom mimics that make a diagnosis
of ALS a process of observation, testing, and elimination.
The first two are the most common neurological determinations.

Anxiety
Benign Fasciculations.
Myasthenia Gravis.
Multifocal Motor Neuropathy.
The Parsonage–Turner syndrome.
Spinobulbar Muscular Atrophy, or Kennedy's Disease.
Demyelinating Syndrome
Asymmetrical Spinal Muscular Atrophy.
Cervical Polyradiculopathy.
Facial-onset Motor Neuropathy.
Hereditary Spastic Paraparesis.
Primary Progressive Multiple Sclerosis.
Metabolic Myelopathies.
Corticobasal Degeneration.
Cervical Myeloradiculopathy.
Multiple Sclerosis.
Carpel Tunnel Syndrome.

And many, even given one of those diagnosis... still have suspicion they have
ALS and continue searching the subject. The disability compensation thing
I won't go into.

You're not the only one who has a long and frustrating road to final diagnosis.
Over the years we've read hundreds of stories like yours.

Help yourself by not focusing on ALS. And... stop following this Forum.
There's not anything more we can add to your situation.

Again, "I hope for you... some doctor helps you onto a more curable healthy life."
 
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Nikki J

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If your neuro wants a neuromuscular opinion ask them if they will call Denver to see if you can be seen sooner. We have had people get seen earlier if their referring neurologist does this.

I love Dr Brown but I think it is ridiculous to travel from Colorado to Worcester in a pandemic no ,less ( there will be no direct flight for sure and it would be an extremely difficult trip if you reporting your issues accurately) to see him. IF you had genetic ALS maybe but you don’t know yet what you have. There are lots of perfectly competent neuromuscular experts far closer but I think you should try to move up the Denver appointment as a first step
 

Bestfriends14

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Blue, you must be very frustrated to not yet have received an answer to what is going on. However, you seem to be focused on ALS as a diagnosis, yet do not have any ALS symptoms, such as the most important hallmark (failure), and clean clinical exams, and 2 clean EMGs. I am not sure why you have chosen to seek an ALS diagnosis, but having been told you do not evidence this disease by forum members, doctors, and a world renowned medical centre, you should be reassured by this, yet sadly you are not. Please do not go traveling around the country during a pandemic chasing an ALS diagnosis. Take a step back, take a deep breath, and let the experts try to find out what is going on. I am not saying do not be an advocate for yourself. by all means do, but do not start every medical appointment with "do I have ALS"?. Because, by all indicators, you do not.

All the best to you and take good care.
 
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