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Bestfriends14

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Aaron, you were diagnosed with ALS via the telephone? That's an unusual method of diagnosis. I would hold tight until you get to Baylor. I've never heard of someone being diagnosed via a video call, so I'd want to make sure you are seen by someone in person before writing yourself off as having ALS.
 

Aaronmandevill

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Yea he said he would write it as possible but not probable until EMG. Said he just wanted to get me started on medication. But he said I guess my previous symptoms meet some awaji criteria (almost). Babinski reflex, fasciculations, atrophy, paralysis on one side of throat documented with swallow study and laryngoscopy.

I went with Methodist instead of Baylor but that appointment is in limbo looking like august 8 to see them. If I’m still able I will use them for further treatment and diagnosis for sure.

Edit: He did it via a video call
 
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KimT

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Aaron,
You're doing all the right things. Just keep living life. I know how hard limbo is but try to focus on the here and now. It's not our place to question your doctors so I won't. I just hope you get a different diagnosis. Hang in there.
 

Aaronmandevill

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@KimT Thank you for the kind words, I can’t imagine trying to navigate this all without these forums and the loving people within.
 

Aaronmandevill

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Sorry to post again before my EMG with Dr. Wong on Tuesday but I’ve been so worried lately. My right side neck and back is in so much pain I have to wear a neck brace and take flexiril which calms it down. This developed over past 3 weeks. With swallowing getting more difficult I’m scared what the following weeks will look like. Outside my appointment with Dr. Wong is there anything I can prepare for what could be coming? My mom says if it’s that fast then nothing I do will make any difference, but I want to try and prevent unnecessary suffering if I can.
 

Nikki J

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I am sorry you are in pain and hope the brace and flexeril help. Try ice and heat and see which is better for you. You are better to try to relax as stress will exacerbate muscle tension and pain. Try to focus on other things while you wait. Nothing much is going to change in 5 days
 

KimT

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Hi Aaron,

This might sound weird but ice helps my foot and leg pain and heat helps my back pain. I also take Valium to relax the muscles. Try adding some magnesium.

I totally understand how it is to feel anxiety and helplessness. Can you get to a pool for a warm swim?
 

Aaronmandevill

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Thanks for the tips @Nikki J and @KimT , when I take a hot shower it all feels so much better for an hour or so. The flexiril relieves a lot of the neck pain but not so much the back pain. With your advice I went ahead and bought a heated neck/back blanket from Amazon. I think I could fit it under the neck brace. To be totally upfront different doctors have prescribed me Ativan and Valium and I’ve been taking both. I know the pain this could cause me with withdrawals but it’s difficult to cope right now. I have only been taking about a quarter pill of each and usually not overlapping. The Valium helps with sleep and Ativan helps with high anxiety, I haven’t been taking Ativan every day. My mom is coming down this weekend and my sister said she is drinking for the first time in her life with how stressed she is so I want to be as calm as possible for her.
 

KimT

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I take Valium to help my muscles relax. It works and I don't seem to have to take more now than six years ago..

Try to enjoy your Mom's visit.
 
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