Old 01-05-2013, 11:04 PM #31 (permalink)
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Default Re: What kind of doctor to see?

Very hard indeed! Probably nothing out there quite comparable to having neurological symptoms--it's that possible loss of control of our bodies issue I think. But we forum helpers are supposed to advise you to always be sensible and not get too whacky worrying about things that you cannot control <g>.

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Old 01-05-2013, 11:40 PM #32 (permalink)
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Default Re: What kind of doctor to see?

Thanks for understanding . . . and for doing your job as a forum helper!
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Old 01-10-2013, 03:15 PM #33 (permalink)
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Default Re: What kind of doctor to see?

Well, I am back from the neurologist. I have weakness in my left hand and wrist, left foot and ankle, left side of my face. I am having an MRI monday, and he is referring me to the ALS clinic for EMG. He brought up ALS (not saying I had it, but that there are a number of diseases that can look like this, including ALS), and said he wants the guy at the ALS clinic to do the EMG, as he is an expert. I asked if he thought it might be autoimmune, and he said it's just really hard to know at this point what is going on, but that he wants to start with the EMG. If it's neuromuscular, I'll stay with the specialty clinic, if not, I'll come back to him. He and a PA both checked my left foot as the PA thought my toe went up, he was not quite sure . . . but the reflexes in my knees and ankles were completely non-existent, even after they had me clench my hands or whatever. After he had me open my mouth and move my tongue around for awhile, my teeth started chattering like crazy. Not sure what the hell that was about, maybe I was just nervous.

Well, that wasn't the news I was hoping to hear, but I totally realize that there are a lot of things that can cause muscle weakness besides ALS, so I just need to not let myself get too scared at this point. Bleh.
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Old 01-10-2013, 03:28 PM #34 (permalink)
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Default Re: What kind of doctor to see?

Dang! But, you are so right, it can be many many things. When do you expect to have the EMG? Just a note about that, and in case they don't tell you, do not wear any skin lotion whatsoever anywhere on our body before the test !

Try to relax in the meantime. (Yeah sure!)

I am not a religious zealot, but I must tell you, that praying helps me. Not sure if its the meditative quality, or the fact that God is listening, but it really soothes me, especially when spirits are sagging a bit.

Let us know how you are keeping and never hesitate to PM anyone of us if you need some one on one!
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Old 01-10-2013, 03:32 PM #35 (permalink)
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Default Re: What kind of doctor to see?

Your attitude is the right one: there are a lot of diseases that can cause muscles weakness so try not to worry much (easy to say but not to do) and wait for the EMG that will give you answers. Good luck and keep us updated.
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Old 01-10-2013, 03:38 PM #36 (permalink)
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Default Re: What kind of doctor to see?

Thanks, ladies. I don't know how long it will be before I can get in. They have to send my file or something. They said they'd call me next week. Elaine, thanks for the tip about the lotion.

I am not religious, but I do find meditation to be helpful. I may give that a try. I am giving two talks at a conference this weekend, and two of my students are also presenting their work, so that should keep me pretty occupied, at least over the weekend. Hopefully I won't fall down or anything while I'm lecturing, LOL!
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Old 01-10-2013, 04:11 PM #37 (permalink)
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Default Re: What kind of doctor to see?

Like Elaine says, "Dang!" It is still early in the game and having the EMG at the ALS Clinic is good because they are so experienced. The lack of reflexes may be a positive thing versus hyper reflexes. I really believe in prayer and positive thinking. I was hoping they would have good news for you today, but let's hope and pray for good news after your next EMG. There are still lots of diseases out there that haven't been ruled out. Take care. And as Elaine says call on us here if you are bummed out and need to vent or ask questions. PS When my husband was being d i a g n o s e d, his first neurologist said "Lou" as he called A L S, and then the pro's at the Neuromuscular Disease Clinic put autoimmune on the table and they were right.
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Old 01-11-2013, 12:14 AM #38 (permalink)
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Default Re: What kind of doctor to see?

Thanks, Laurel. I'm really hoping it turns out to be autoimmune. That just seems less scary than the alternatives at this moment. And I agree about the reflexes being a positive sign. Keeping my fingers crossed that things will be favorable, and I really happy to live somewhere with a specialist near by.
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