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Cindy

Where did you sister get that pin? You know I have Meniers Disease (ear). I have the Tinnitus (ringing/loud) deaf in right ear, but still here that sound well in both ears. I would love to have one. I can feel for those that have it. No Fun At ALL!



Lorie
 
Actually I haven't seen her wear it lately. It probably broke since it was old and faded last time I saw it. But if I see one for sale I will pick it up for you! Cindy
 
Re: Dont be affraid

Dear Ellisa, I'm so sorry I havent logged in since 07 I did go to the MDA center and they did come up with Balbur Palsy or ALS, Since the last time I was on, I was still doing everything but , now things have slowed down since then I have lost over 40lbs have trouble swallowing speech, using left arm and leg, memory ect. I'm still hanging in there when they told me what I have they said the longest I could live is maybe 3 years. I don't see that right now only GOD knows. My quality of life is still good. I hope you found out what was wrong with you, as I remember you were going threw some stuff yourself. I will log on soon again maybe we can keep in touch Take Care. GOD bless.
 
Doug, thanks for sharing. Sorry you are dealing with Bulbar palsy. Ellissa has not been on for a really long time. Hope you stay around with us. You may plateau, you may be around for years.. Keep thinking positive.
 
Hi

Only been on this ALS journey with my husband and his sister for 3 years so my knowledge is personal not professional. But have you asked to have muscle biopsy for Inclusion Body Myositosis or otherwise known as IBM. And for new reading for yourself google this syndrome. Anything is worth a try.........
 
Hi Ellisa, I'm Douglas I have Bulbar Pulsy is it a little more serious ALS, your symtoms really don't sound like ALS, it sounds a little more like RSD Refuctul Symphatic Dystorphy. have you broken any bone like ankle foot leg? that can lead to RSD, the trouble swallowing half way down? When you have ALS the swallowing is usually at the back of the tounge because the muscles give out in your tounge. And your speach is good now I think your looking for something that isn't there. Maybe you should see a new doctor. I personally think you will be okay but, I'm not a doctor so take my comment with a grain of salt. Don't worry so much I think everything is fine you will find out what is it you really have Good luck.:razz:
 
Just looking for some insight

Hey People,

I just found out that I have foot drop and am waiting to see the neurologist. I want to know if foot drop or C.M.T is related to A.L.S, since most of you know the real facts.

Thanks beforehand :)
Merry Christmas and Happy Holidays
 
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