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Old 07-27-2014, 06:42 PM #11
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Originally Posted by Pixie Perfect View Post
I know it's a dx of exclusion. And they did find a lesion "suspicious" of being demyelinating. They've ruled out everything except NMO and MG at this point. Hopefully since I was negative on the spinal tap, my chances of developing MS in the next 5 years drops from 50% considerably.

Has MS progressed any in your case? Have you developed any new lesions since? Has your disability increased?

Pixie, I am an older male, and was around 51 when this hit. I lost my ability to walk anything like normally with in a year and a half. I was also diagnosed with Primary Progressive from the start, at least once I found a doctor smart enough to follow the clues? and order the right tests.

My disability has progressed, not a real concern for me because I expected it to just based on my digesting the available info.

My last MRI's were late in 2005, and the specialist and MRI reports noted them as consistent with a clinical history of MS. I had a brain, cervical, and thoracic MRI done at one sitting, all showed evidence.

I really haven't felt a need to have them repeated, like I need some one else to tell me I am brain damaged? LOL

Just a different view on things than most, I never expected to live forever, what happens? happens. I don't spend much time worrying about things that are out of my control.
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Old 07-27-2014, 07:05 PM #12
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Originally Posted by TheSleeper View Post
Pixie, I am an older male, and was around 51 when this hit. I lost my ability to walk anything like normally with in a year and a half. I was also diagnosed with Primary Progressive from the start, at least once I found a doctor smart enough to follow the clues? and order the right tests.

My disability has progressed, not a real concern for me because I expected it to just based on my digesting the available info.

My last MRI's were late in 2005, and the specialist and MRI reports noted them as consistent with a clinical history of MS. I had a brain, cervical, and thoracic MRI done at one sitting, all showed evidence.

I really haven't felt a need to have them repeated, like I need some one else to tell me I am brain damaged? LOL

Just a different view on things than most, I never expected to live forever, what happens? happens. I don't spend much time worrying about things that are out of my control.
Well you're definitely a bit of a different case than I am. It's just, the MRI and my history is the only evidence they have of MS. First they said MS (based on presentation), next they said vascular malformation (upon first brain MRI), later they said spinal myelitis, then when they did an MRI on my spine and found nothing, they said... idunno, then they did another brain MRI and found the lesion. They then said Clinically Isolated Syndrome and gave me a 50% chance to develop MS in the next 5 years. Then I see my spinal tap is negative, but there's evidence of auto-immunity with a decrease of IgG over the time I've been there.

Like I said, I just don't know what to think. They're slowly ruling things out, and my symptoms are pretty much gone (except an occasional kick from my leg, some weird sensory thing, or eye lid spasm, or fatigue). Sometimes I think I'm crazy, then I know I'm not because I can't control my reflexes (or lack thereof). I can't help but think, is this MS or is this some strange nonsense that they can't think of?

I know there's no point in worrying, but I'm young and I have a long time to plan my life. I would like to go back to school but if this continues, how am I going to complete anything? I wouldn't want to run up more debt and be sick.

I can deal with it if I know what to expect. If it's cancer, it's cancer. If it's CIS, it's CIS. If it's some aneurysm that is going to burst in 5 years, I can deal with that too. But right now I can't stay out of bed for an entire day, and what am I going to do?
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