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?
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?