In the summer of 2009, I got a stomach flu for 2 days. After that, I started falling a lot. I got L'hermittes sign. I went to my family doc. She found I couldn't walk heel to toe and I had hyper reflexes in my leg. She said I should consider MS, especially since my grandmother was dx with MS in her 20s.
I had a brain and cervical MRI, no lesions. I was sent to a neuro. Neuro threw the needles at my legs. It didn't hurt. Had a spinal tap. There were problems. He did a MRI of my thoracic spine. There were two large lesions. Long and thin over 2 or more vertebrae. He dx Devic's Disease or NMO. I was 42.
I went on preventatives (Imuran, then Cellcept). I failed. They made me sick as dog and no help whatsoever. I tried Copaxone, just in case it might help. I failed. I did Solumedrol. I was a mess. I did IVIG. It worked for a little while, with no lasting result. But it's the only thing that gives me relief, even for a short time. Problem is: This disease does not look like Devic's. It is progressive. I don't attack and get better. I keep getting worse. My MRI's currently say there are no lesions, but there is still progression. It has been 5 years. There never have been brain lesions, only thoracic spine lesions. I have horrible clonic spasms in my legs, especially at night. I take Tizanidine or Baclofen. Depends on what works. I have started to have severe back and leg pain over the last few months. I can't stand for long. I can't sit for long. But I have never had a period of remission.
I have gone without treatment for longer than I normally would because I have an appointment with a new neuro. I have thought there was something hinky about my dx for the last year, when the doc told me my lesions were gone, and my problems were caused by residual nerve damage. But there has been no stability, I have been progressively getting worse.
The more I read about PPMS, I think that's what it is. But the genetic thing throws me. My grandmother acted exactly the same, as I remember. The leg jerking to give relief for the spasms, the inability to walk. I would like to talk to someone with PPMS to see if they feel the same as I do. Or to find out if anyone has experienced anything similar. I need some answers.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I had a brain and cervical MRI, no lesions. I was sent to a neuro. Neuro threw the needles at my legs. It didn't hurt. Had a spinal tap. There were problems. He did a MRI of my thoracic spine. There were two large lesions. Long and thin over 2 or more vertebrae. He dx Devic's Disease or NMO. I was 42.
I went on preventatives (Imuran, then Cellcept). I failed. They made me sick as dog and no help whatsoever. I tried Copaxone, just in case it might help. I failed. I did Solumedrol. I was a mess. I did IVIG. It worked for a little while, with no lasting result. But it's the only thing that gives me relief, even for a short time. Problem is: This disease does not look like Devic's. It is progressive. I don't attack and get better. I keep getting worse. My MRI's currently say there are no lesions, but there is still progression. It has been 5 years. There never have been brain lesions, only thoracic spine lesions. I have horrible clonic spasms in my legs, especially at night. I take Tizanidine or Baclofen. Depends on what works. I have started to have severe back and leg pain over the last few months. I can't stand for long. I can't sit for long. But I have never had a period of remission.
I have gone without treatment for longer than I normally would because I have an appointment with a new neuro. I have thought there was something hinky about my dx for the last year, when the doc told me my lesions were gone, and my problems were caused by residual nerve damage. But there has been no stability, I have been progressively getting worse.
The more I read about PPMS, I think that's what it is. But the genetic thing throws me. My grandmother acted exactly the same, as I remember. The leg jerking to give relief for the spasms, the inability to walk. I would like to talk to someone with PPMS to see if they feel the same as I do. Or to find out if anyone has experienced anything similar. I need some answers.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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