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bratpak

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Hello again everyone,
You are all so helpful and encouraging, I thought I'd post this question to see if any of you have experienced this. In addition to the myriad of symptoms I've had for the last 13 months...Now for the last month or so, my tongue feels like it has tiny cuts all over the tip of it, from the tip to about an inch or so inward, across the entire width of the tongue. This area hurts sort of the way papercuts do and is very sensitive to anything with any spices, even salt. I'm finding it more difficult to say some words (mostly "S" words). When I hold my tongue out and it dries a bit, the sore area looks more red than the rest of my tongue and it appears as if there are indeed tiny splits in my tongue. There is also a bumpy texture, like small peas under the skin. As for the testing, my blood work for myasthenia gravis was negative. So now we've ruled out lupus, MS, rheumatoid arthritis, myasthenia gravis, lyme disease, B12 deficiency, thyroid disease, brain tumors, herniated spinal discs, degenerative disc disease and probably a few others I can't think of at the moment. I'm getting scared that with each "normal" or negative test that I have with continuing symptoms, the more likely an ALS diagnosis is going to be. Have any of you had the types of problems with your tongue like I described? Can you suggest any other tests I should have? Not knowing what's wrong is really getting to me after this long with no answers! Thank you all so much for your support and God bless you. You are wonderfully courageous people and I thank you for being so supportive.

Cyndi :)
 

bratpak

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Ok.....so can anyone recommend a good neurologist? Is the ALS Clinic at Virginia Mason any good? That's where my doc wants to send me......
 

TRACY22

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Its a top rated ALS certified clinic. Many from Alaska come down here for their neurology services. They also team with research groups from U of W and around the world.
 

bratpak

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Thanks Tracy. I talked to my doctor today and he is writing me a consult to Virginia Mason Neurology. I was there in June, but at that time MS was the suspect, so I was seen by an MS specialist and she didn't think I have MS, but she didn't offer any other ideas either. She is the one who told me "ALS doesn't hurt", which made me suspect of her experience because everything I've heard about ALS is that it does cause pain. But I've only heard good things about the doctors there, so I'm willing to go again and see a different doctor who can hopefully tell me what's going on! I appreciate your input.

:-D
 

cartman

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i went through 10 mo's of testing before diag of als, had most of the test you mentioned, keep the faith, sometimes it is better knowing then going to sleep each night wondering, it has been for me and family
 

bratpak

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Thanks for your reply cartman. I'm going into month number 10 of testing, and I'm starting to feel like a dang lab rat! My doc has referred me to Virginia Mason (again), but Dr. Ravits is booked into November, and I'm still waiting for them to call me back and let me know if they'll even take me as a patient or refer me back to a general neurologist. I'm really hoping he'll see me since he has so much experience with ALS. I'm am at the point, as you mentioned, where I just want someone to give a name to whatever is going on with me. Not knowing is the worst. I've already made up my mind though, that no matter what happens, it's in God's hands. Thanks for your input! I'll keep ya posted.....

Cyndi :)
 

bratpak

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Something else weird has happened now....last night I passed out. I mean flat out lost consciousness for about 30-45 seconds. I was sitting at the table reading a magazine about a half hour after dinner and all of a sudden my ears started ringing and I got really dizzy and my hands and feet started tingling. I got up and took about three steps toward the couch where my husband was sitting and hit my knees and told him I didn’t feel good. It didn’t register with him at first what was happening. I told him again I don’t feel good and then I passed out. I remember hearing him jump up off the couch and yell for my son to come help, and I felt him lifting me off the floor but I couldn’t respond. Then I totally blacked out. He said I was out for about 30 seconds. When I opened my eyes I was incoherent…I could see my husband talking to me (and the fear in his eyes!) but I couldn’t hear him and couldn’t respond. And my whole body was buzzing. I snapped out of it about 15 more seconds later, then I was really shaky and weak and broke out in a cold sweat. The buzzing feeling got worse, more intense. My husband carried me upstairs, put me on the bed and called my sister to come over and stay with the kids so he could take me to the hospital. By the time the E.R. doc made it to my room, I was much more coherent and told him about my history of worsening neurological symptoms over the past year+ and he said he has no doubt this was related to whatever is going on with me. He called it a vasovagal syncope (fainting). He said it happens when the communication between your brain and your heart gets interrupted and your blood pressure bottoms out and then you faint. Anybody ever heard of this or had it happen to them? I had a similar incident about three weeks ago when I was going to the store with my sister (she was driving, thank goodness), but I didn't loose consciousness that time; just came really close.....any ideas?

Thanks for everything...
Cyndi :)
 
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