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helpme123

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Joined
Jan 7, 2013
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Reason
Learn about ALS
Country
US
State
florida
City
pinellas county
I have NO weakness, No balance issues , but I do have muscle stiffness/tightnessof all my neck, arms, legs, ankles, face ,hands, shoulders, their all stiff/tight . I DONT have issues of swalloing, or chewing, but the muscles are extremly tight , spitting out toothpste is strange dng, I am able to lift and strech my legs on top of my dresser , I am able to walk on my toes, heals is also ok ,but muscles are tight, I do get pain from the stiffness, but I have days with none but still have the stiffness, the muscle tightness and stiffness is persistant 24-7 every day for the past 3-4 Mths I have high glutamate, I have the Gene mrkers for ALS , SOD1, there can or are other reasons for the muscle stiffness but I am trying to rule out every possible causes, I also have nerve pain all over , its 24-7 , but thers days where its not noticable , do ALS cause severe muscle pain from tightness , I think it flares up like Inflammation, my hands always feel like they are fat or swollen , but nothing every indicates theyare other then a sensation, do ALS symptoms come and go, how fast do symptoms persist ? If it sounds like ALS what test can I do to know for sure, I also excercise on my tredmill almost daily , the muscle stiffness dont really stop me from dng anything physical other then when the nerve pain is presnt it makes the nerve pain more intense. I dont really get much physical weakness , actully no physical weakness at all, I am looking for answers. Please help .

Thank you
Laura
 
HI Laura

I'm sorry you've got the gene marker that has put this cloud over your head. My suggestion to you would be to simply see an ALS neuro to put your mind at ease if nothing else.

I'm in FL, too. I'd highly recommend Dr. Katzan at the University of South Florida Medical Center in Tampa. I found their clinic on the ALS association website, and she's great. Very personable--and very knowledgeable.

Stiffness can be so many things--but with the genetic issues--it can't hurt to be checked, I'm afraid to say. Remember, though, normally weakness is a first sign...so keep that in mind!
 
Off to moderation. Check back for a reply. Hang in there!
 
Thank you , I am so scared ! , I am not from Florida , I dont have health cre here, I am from Canada , and is in Florida for a few Mths , I dont have weakness, I can stand on one foot, I can go on my treadmill, I walk every day , I hope that would consider a good sign, but I have extreme muscle stiffness , my neck, shoulders, hands , fingers, upper legs , they feel heavy , my face muscles are extremly tight, and I have sevre nerve pain all over my entire body , OMG my hands and arms hurt soooo bad from the stiffness.
 
I have a lot of Canadian friends...both that live in the US and that live in CA still. There are benefits for you to go see a doctor, are there not? As I said, weakness would normally be a presenting sign in ALS, as you are probably aware, but with the genes--it would be advisable to be seen, as I said, if for no other reason than to set your mind at ease.

All kinds of things can cause your symptoms--stress being only one of them. My main issues are spasms and stiffness at this point--but there are a lot of things that can cause them! Fibromyalgia is the most common cause of widespread pain and stiffness.

Why did they do the genetic testing on you? Have you had loved ones in your family with ALS?
 
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