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ALS Community

This patient support community is for discussions relating to Amyotrophic Lateral Sclerosis (ALS).
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ALS??? Advice PLEASE!!

by carisa, Feb 03, 2008 07:12PM
I am a 29 yr old female. Last October I went to bed feeling great, always had lots of energy, I woke up the next day feeling terrible. I felt very weak, very tired, very dizzy, heavy feeling arms and legs, etc. I went to the doctor and asked for an EBV test, mono test. That came back positve with very very high numbers. Here I am four month later feeling the same exact way. I went back to the doctors and she diagnosed me with chronic EBV and chronic fatigue. I guess I do believe that is the correct diagnosis, but I am still worried about the possibility of having ALS. What do you all think? I do have an eyelid twitch that has been going for months as well. Is it possible for someone with ALS to just wake up and feel awful like that, or is it usually a slower progressing disease. I'm not tripping or dropping things either. I just feel like I may collapse a lot because of the fatigue. Any ideas??

Carisa
Member Comments (5)

by chochmeh, Feb 08, 2008 06:41PM
To: carisa
CF can cause twitching also along with exhaustion...maybe try alternative medicine...a holistic doc is more apt to treat than regular MD.  i think there are diets and suppliments and other therapeutics for this, but you really need to go to holistic MD...

by IMAlive , Feb 24, 2008 10:48PM
To: carisa
My first husband died of Als.  When he was first dianosed of it is when one night he went to bed fine then the next morning he work up feeling very week and unable to swallow.  He went to the doctors who ran test and found out he had a mini stroke in the night and was dianosed with ALS.  For him it happened as quick as that.  I can tell you however that ALS is rare in females. For him it was a slow process that lasted over a couple of years.  With a complete loss of muscle movement, not sure about the twitching I don't remember anything like that

by SpreadTheHope, May 03, 2008 02:09PM
To: carisa
Hi Carisa,

My father was diagnosed with ALS in August 07. He had also struggled with chronic fatigue for years. I'm still not sure if they were related. However, regardless of what it is, my father was treated and is now symptom free from both ALS and Chronic Fatigue. You can read his whole story in the journal entry on my profile.

I'm just now starting to spread his story around as much as possible. He was given two years to live last August and now he is living as if it never happened. I often have to remind myself because he is as good as new!

I hope this encourages you! Have an awesome day!

by tigerstripes, May 14, 2008 07:15PM
To: Carisa
My father has also been diagnosed with ALS. Unfortunately, he went through many neurologists who had no idea what they were dealing with. His disease is progressing very slowly medically speaking. Just in these last six months has he been confined to a powerchair. However, we feel as if he is going much too fast.

He fell down the stairs one day. Just...fell. He got up swearing and limping. He had hurt his leg, but no one thought anything of it. People fall down stairs all the time. He never recovered from the arm and leg he landed on. We hadn't noticed it, but it was progressive and slow, not at all what you are saying.

He started staggering, then walking with a cane, then a walker, then a scooter and finally, now a powerchair. I don't think you have ALS, because though he feels tired often, it is mostly because of his medicine, not because of his disease. ALS affects less than 5% of America each year so I think that you are safe. I'm not a doctor, but I suggest you see a neurologist or a neuro-scientist, not just a general md.


by Jessie7580, Jun 16, 2008 09:34AM
To: Hi
Does this run in families and how do you know if you have it? I have had similar issues going on, but no one can seem to figure out why. I finally got a doctor who believes me and doesn't think I am simply another hypochondriac. How are you diagnosised with chronic exhaustion?
  Thanks
  Jessie7580
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