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Mysweetie

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Hi..my neurologist is sending me to a als specialist..have had tongue atrophy and slurred speech for over a year..also have hyperreflexia and neuropathy in left foot..some stiffness in left calf..I'm scared..I don't feel like I'm dying?? Otherwise I am healthy...I'm just confused and weepy..any comments would be appreciated..maybe it's nothing???
 

Nikki J

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Hi. Your post was moved as you are not diagnosed.

Can you clarify what you mean by neuropathy in your foot?

Where is your hyperreflexia? Do you also have Hoffmann or babinski? Have you had mris or emgs?

Answering those questions will help people answer you better.

I understand you are scared. Who would not be if your neuro raised the issue of ALS. Slurred speech and tongue atrophy sound worrisome but there are lots of tests that need to be done to figure this out. The ALS specialist will be able to do so for you but of ocurse waiting is hard
 

Mysweetie

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I have had mri...and nerve conduction test on left side..had test that showed muscle was weak on right side..now my foot on left side has some loss of feelings when they run that prickly thing over it.and sometimes it just feels like it's asleep..no nerve cond5test on left side yet because she said specialist will want to do that..they have ruled out myasthenia gravis and ms
 

Mysweetie

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My hyperreflexia is all over..hands, arms, knees, worse in left knee
 

Nikki J

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All over hyperreflexia could be normal. Did you just have nerve conduction ( shocks) or needles too( emg). A problem in nerve conduction as well as sensory symptoms usually means something other than ALS but if you had an mri of your brain your speech issue is concerning.

When is the ALS specialist? Soon I hope? Your neuro is right they usually like to do their own emgs

Good luck
 

Mysweetie

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I also had the needles up left arm..she said they weak...I wish they would hurry and get me in
 

Nikki J

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Have you got an appointment? If it is far out call and make friends with the appointment person. Ask to be on a cancel list and give all your contact info. If you could get there quickly at short notice tell them that.
 

Kristina1

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The wait is always very hard, but it sounds like they have more testing that needs to be done to get you some clearer answers. I agree with Nikki, push for that appointment date and get on a cancellation list.
 

Mysweetie

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I am still waiting. I called my neurologist office and they said it takes time to complete her letter..they also told me I wasn't the only patient...right now I feel like no one cares..I'm eating pasta every night and drinking too much wine..my husband won't even talk to me about it..he has had 2 wives pass away..so I am trying to understand..I go on crying binges
 

KimT

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I think you need to find that out. While you're at it, you need to get copies of all your medical reports, especially the tests that were run.

Let us know what the neurologist says.
 

Nikki J

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Good advice. Also look here for places you should ask for. I think if your location is accurate I would do U of MI.

https://www.neals.org
 

Mysweetie

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I have appointment on Monday at noon..I believe the neurologist I'm seeing is the medical director there..they said they squeezed me in...unfortunately I haven't received paperwork in the mail they were sendong..hope mail comes early on monday..otherwise I hope they give me time there..do u think they will do any tests first visit?? I'm assuming they will
 

Nikki J

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Paperwork? As in things you need to fill out ahead of time?

Read the getting a diagnosis sticky ( important post) and then try to organize as best you can. Take all your records with you. If they are a lot put them in a file folder by category in case you need to pull something out.

If it is paperwork in advance aside from demographics and insurance they might want your medical history and a summary timeline of your symptoms ( I sort of doubt it but you never know)

For yourself make a list of questions and concerns.

I rather doubt you will have testing done at the same time unless it was requested by your referring doctor specifically but occasionally they do squeeze in an emg. At the very least you should have a plan when you leave and some kind of differential ( thoughts on what this could be pending test results) every clinic is different though
 
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