NEW... Confused... Scared... Broke... need advice
Posted: Thu Mar 06, 2014 11:05 pm
Hello Everyone,
I posted 2 or 3 times before, but never here because I don't know what's wrong with me. When I had my 1 and only attack it was 2002 and no one else in the family had MS. That changed about 6 years later. I now have a 1st cousin who has MS. A year ago he was put on Adderall. I asked why. He said a certain neurologist who has MS himself realized Adderall can help MS. I asked why again. I was told MS causes extreme fatigue in some people, as well as a loss of cognitive functions. Such as memory and the ability to think logically. In the past 4 years my fatigue has become exhaustion, memory loss gets worse, and I can't make decisions anymore. I'm a 61 yr old man with a collage education and I always had an excellent memory. But no more.
I wasn't dx with MS. I looked up what the neurologist in 2002 put as a dx and he wrote Demyelinating Disease. I have damage in my spine, and the white spots on my cranial MRI. I have a lot of pain in my right arm. I also have loss of tactile sensation, and loss of use to do things like write clearly. My Right Hand also shakes.
One big difference between me and a person with MS is where MS causes the almost constant tingles, I have almost constant pain. Due to the pain I was put on Vicodin in 2002 and in 2004 I was put on Buprenorphine aka Subutex. Not Suboxone because I'm allergic to the Naloxone in Suboxone. I did well with the Name Brand Subutex, but the company stopped making it in 2010. Teva makes it but I can't always get it, and the Roxane brand just doesn't work.
But at almost the same time I was put on Subutex I was given Provigil for fatigue. I can't sleep and then I can't stay awake in the day. I also have extreme clinical depression. I also have no immediate family and 1 or 2 friends. I'm almost homeless.
I live on the East Coast where Hurricane Sandy tore us apart. Until that happened I never took Provigil daily. I used it 3 - 4 times a week. I was fine like that. But after Sandy we had to rebuild. We all did what we could. That was when I started taking Provigil almost daily. But I don't get enough to take them daily. I have big problems with my Docs because they think I take them for fun. But they aren't fun. They relieve the constant exhaustion, and so yes, I feel better.
Ever since I found out many neurologists are using Provigil or Adderall for MS I feel I have support for saying I'm so exhausted I can barely go up and down steps. I also see a great improvement in my cousin's functioning since he was put on Adderall.
I'm wondering how many of you suffer from debilitating exhaustion? I can't even keep my apartment clean. I'm too exhausted. And my Docs don't really believe me. The pain in my right arm is also a problem. And sometimes the pain goes down my right leg. When I compare my symptoms to my cousin's, his tingling = my pain. I can't live like this. I'm not living like this. I'm alive, but I'm not living.
How do the rest of you cope?
John
I posted 2 or 3 times before, but never here because I don't know what's wrong with me. When I had my 1 and only attack it was 2002 and no one else in the family had MS. That changed about 6 years later. I now have a 1st cousin who has MS. A year ago he was put on Adderall. I asked why. He said a certain neurologist who has MS himself realized Adderall can help MS. I asked why again. I was told MS causes extreme fatigue in some people, as well as a loss of cognitive functions. Such as memory and the ability to think logically. In the past 4 years my fatigue has become exhaustion, memory loss gets worse, and I can't make decisions anymore. I'm a 61 yr old man with a collage education and I always had an excellent memory. But no more.
I wasn't dx with MS. I looked up what the neurologist in 2002 put as a dx and he wrote Demyelinating Disease. I have damage in my spine, and the white spots on my cranial MRI. I have a lot of pain in my right arm. I also have loss of tactile sensation, and loss of use to do things like write clearly. My Right Hand also shakes.
One big difference between me and a person with MS is where MS causes the almost constant tingles, I have almost constant pain. Due to the pain I was put on Vicodin in 2002 and in 2004 I was put on Buprenorphine aka Subutex. Not Suboxone because I'm allergic to the Naloxone in Suboxone. I did well with the Name Brand Subutex, but the company stopped making it in 2010. Teva makes it but I can't always get it, and the Roxane brand just doesn't work.
But at almost the same time I was put on Subutex I was given Provigil for fatigue. I can't sleep and then I can't stay awake in the day. I also have extreme clinical depression. I also have no immediate family and 1 or 2 friends. I'm almost homeless.
I live on the East Coast where Hurricane Sandy tore us apart. Until that happened I never took Provigil daily. I used it 3 - 4 times a week. I was fine like that. But after Sandy we had to rebuild. We all did what we could. That was when I started taking Provigil almost daily. But I don't get enough to take them daily. I have big problems with my Docs because they think I take them for fun. But they aren't fun. They relieve the constant exhaustion, and so yes, I feel better.
Ever since I found out many neurologists are using Provigil or Adderall for MS I feel I have support for saying I'm so exhausted I can barely go up and down steps. I also see a great improvement in my cousin's functioning since he was put on Adderall.
I'm wondering how many of you suffer from debilitating exhaustion? I can't even keep my apartment clean. I'm too exhausted. And my Docs don't really believe me. The pain in my right arm is also a problem. And sometimes the pain goes down my right leg. When I compare my symptoms to my cousin's, his tingling = my pain. I can't live like this. I'm not living like this. I'm alive, but I'm not living.
How do the rest of you cope?
John
