07-02-2023, 04:25 PM
It’s troubling that my neurologist did an MRI scan of the brain and 3 on portions of the spinal cord, found nothing, and henceforth focused on treating the symptoms. Thus when I reported additional symptoms of physical dreaming (this site was invaluable in tracking that down) dating back to 2013, she said, “Oh, that’s a sleep problem; you should see a sleep specialist.” As for my increasing problems with walking, “I prescribed a physical therapist; I don’t see why you don’t pursue that.” Fine, okay. I saw a sleep specialist and am now using a Cpap, though my apnea was measured at a mild 6.1 events per hour. Just a Mickey Mouse diversion, as far as I’m concerned. And I’ve been working with a PT for a couple of months. But my balance continues to get worse, and recently I fell 4 times in three weeks.
So I decided to take the advice of several friends and scheduled a second opinion.
That appointment happened last Friday. He did all sorts of coordination tests on me. I thought I did pretty well on a number of eye-hand coordination things. But there were some big surprises, simple things I thought I could do but had lots of difficulty with. And my walking has gotten atrocious!
At the end, he asked if I had ever heard of MSA.
Yep. Multiple System Atrophy. I told him I mentioned MSA to my last neurologist, with concerns it was that, and asked whether the brain MRI had shown any evidence of it. She said no, but said she would look again and get a colleague's opinion too. She got back to me with a message that nope, no evidence.
This neurologist sort of defended her and said it often doesn't show on a regular MRI. He's going to prescribe an NRI (nuclear resonance imaging) with dye to confirm it. The lingering question I have is, why didn't my first neurologist tell me a regular MRI wasn't an adequate test for this? And why didn't she prescribe an NRI with dye?
So, probably MSA. No cure. The nervous system slowly destroys itself. Survival is about 7 years. The autonomic nervous system is the end of the road. But counting from when? I don't know. I've had sleep symptoms (physical dreaming) since 2013. I've had balance problems starting in 2019.
Anyway, right now I go for daily walks with Lori. 10,000 steps. With occasional surprises. (I've been wiped out by a hedge.) I'm on the verge of needing hiking poles. By August I may need a walker. But MSA is not proven yet, and I'm perhaps premature in calling it that.
But I’m pretty sure.
My posts have been sparse of late, since I’m reduced to hunt and peck, with lots of mistakes. It’s just a lot of work. Actually, this very post is being retyped, because a gateway error tossed the first post. How damned cruel. I’m focusing on self-publishing maybe 3 books on Draft2Digital. Hopefully, I can report success on here eventually.
--cranefly
P.S. I knew when I married someone 11 ½ years younger than me I had a responsibility to stay in shape beyond my years. Now it seems I have failed. Though I tried my best. I hope you will extend your patience, understanding, and support to LCF in the coming months.
So I decided to take the advice of several friends and scheduled a second opinion.
That appointment happened last Friday. He did all sorts of coordination tests on me. I thought I did pretty well on a number of eye-hand coordination things. But there were some big surprises, simple things I thought I could do but had lots of difficulty with. And my walking has gotten atrocious!
At the end, he asked if I had ever heard of MSA.
Yep. Multiple System Atrophy. I told him I mentioned MSA to my last neurologist, with concerns it was that, and asked whether the brain MRI had shown any evidence of it. She said no, but said she would look again and get a colleague's opinion too. She got back to me with a message that nope, no evidence.
This neurologist sort of defended her and said it often doesn't show on a regular MRI. He's going to prescribe an NRI (nuclear resonance imaging) with dye to confirm it. The lingering question I have is, why didn't my first neurologist tell me a regular MRI wasn't an adequate test for this? And why didn't she prescribe an NRI with dye?
So, probably MSA. No cure. The nervous system slowly destroys itself. Survival is about 7 years. The autonomic nervous system is the end of the road. But counting from when? I don't know. I've had sleep symptoms (physical dreaming) since 2013. I've had balance problems starting in 2019.
Anyway, right now I go for daily walks with Lori. 10,000 steps. With occasional surprises. (I've been wiped out by a hedge.) I'm on the verge of needing hiking poles. By August I may need a walker. But MSA is not proven yet, and I'm perhaps premature in calling it that.
But I’m pretty sure.
My posts have been sparse of late, since I’m reduced to hunt and peck, with lots of mistakes. It’s just a lot of work. Actually, this very post is being retyped, because a gateway error tossed the first post. How damned cruel. I’m focusing on self-publishing maybe 3 books on Draft2Digital. Hopefully, I can report success on here eventually.
--cranefly
P.S. I knew when I married someone 11 ½ years younger than me I had a responsibility to stay in shape beyond my years. Now it seems I have failed. Though I tried my best. I hope you will extend your patience, understanding, and support to LCF in the coming months.