Status
Not open for further replies.

hopefu1

New member
Joined
Feb 11, 2010
Messages
6
Reason
Other
Country
US
State
ga
City
gainesville
My symptoms of weakness began about 4 years ago. It started in my lower legs and would make it hard for me to walk for about a week, then it would go away. A few months later it comes back and the weakness is worse. By now, the weakness gets so bad, I have a wheelchair and a walker. I have to have help bathing, cooking, cleaning. During my episodes I have to stay in bed and each time. My muscles ache or cramp, and just feel overworked, though I've done nothing. I've had twitching for 2 months, in my abdomen, face, and limbs.

Now I have been told ALS, PLS, and other MND symptoms do NOT come and go like this but I did have a nurse tell me it's possible. She is the one who got me thinking ALS but I don't think I "fit" and I'm hoping to get answers soon.

I've had a few other health issues since 2005. Severe dizziness that is not vertigo, headaches that last for weeks, numbness, and tingling in my face, hands and feet. A few weeks ago I started having burning pains in my upper back but they refuse to check me for a herniated disc. They said it's rare to have one that high on the back? I have seen a cardiologist, ENT, and a neurologist and so far....no answers. They think I may have two conditions at once....or something rare. All of my symptoms fit Lyme disease but I have yet to be tested for this. My MRI in 2005 was normal and they said it was not MS but I am being retested in a few weeks. I'm also going to ask for the Lyme test, EMG test, and I think they also want to do the spinal tap.

This has left me disabled, unable to work, and penniless. I don't have money to keep being tested for everything and I'm at my wits end after 4 years with no answers. My next appointment is Wednesday with my neurologist but I can't keep "waiting and seeing" for something else to happen. Since I don't have money, I can't rush these tests and I have tried all the financial assistance groups I can find in my state.

My last blood test showed low platelets but nothing to be concerned about, and they are having trouble drawing blood now. It took 20 minutes to get 4 vials. My head CT last week was normal. My last MRI of brain and spine in 2005 was normal. I had another MRI for a herniated disc in 2008 and it was normal. Thyroid is normal as well. I've been checked for diabetes and anemia numerous times. Sure I can wait and see in a few weeks but the waiting doesn't make me feel too good at the moment and I'm just needing any suggestions or advice you can give.

My questions are

1) Can the weakness come and go, or get worse one week and a little better the next? My weakness lasts 2 weeks at the most and then can disappear for months. (though my other symptoms are always present)

2) Does this even sound like a NMD? Even without the dizziness and headaches?
 
No it does not sound like ALS. Contrary to what the nurse told you strength cannot return with ALS. There are other things that can cause relapse-remitting symptoms of weakness, but we could only speculate.

Best wishes that you can find the right doc to figure it out - sounds like it is certainly a world-changing issue, but maybe treatable. Best wishes.
 
KTMJ-
Thanks for your reply and best wishes. I'm actually feeling "ok" today and am able to sit up, which I haven't been able to do in weeks. My legs are still weak but I'm able to walk without help. I've had a headache for about 3 weeks, with horrible dizziness and nausea. I hope my appointment goes well on Wednesday and I'm going to push for Lyme testing.

Not sure who asked, but I have not noticed any muscle "wasting" though I have lost muscle tone due to very little activity. It's mostly in my legs. I used to curl hand weights up until October, so my arms are still a little toned but I cannot walk or work out my legs. Also, my reflexes were tested and they are normal.

My twitches and spasms have calmed down a lot but I'm still have sharp shooting pains in my legs and ribs.

Thanks to everyone for your replies. I greatly appreciate it:)
 
Status
Not open for further replies.
Back
Top