notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
Some good news and some bad news.
The GOOD news is that my EMG only shows any LMN damage in my arms--which is very possibly caused by very bad fall two years ago. I also have low B-12--which the doctor thinks is accounting for all the other LMN signs. It's within normal ranges--but the metabolism is NOT within normal ranges (no, I don't understand what that means)
So, I now have to give myself B-12 shots and find a good rheumy and a new GP that will actually try to figure out other stuff for me.
That doesn't answer the UMN issues--but at least I feel relatively confident that it's not ALS. Or if it is--it's UMN dominant, which is better, or PLS. I'm in a much better mental place.
Nearly all the bruising in my hand vanished overnight (it was all red, hot an swollen Friday when I woke up) The spot on my leg that bled forever didn't even bruise! My left leg has the cellulitis--but it has also spread to the right leg. My legs are hugely swollen. No clue why. I'm not on any new meds but lyrica--and the swelling was before the lyrica.
MRI results are not in, so MS isn't off the table (but I looked at the scan, and saw nothing but brains).
I had an abbreviated EMG due to bleeding and cellulitis in my bad leg. I had one spot she hit on the right leg that gushed at her. My legs hurt a lot due to both the swelling and the spreading cellulitis. The antibiotics haven't helped yet, but it hasn't spread very much above the outline we marked on it. She did an emergency doppler study to be sure there were no new clots--there weren't. (the tech told me)
I apparently was not supposed to take ANY of my meds that day--and I didn't know that. I took my special blood thinner she'd prescribed, my valium, my pain meds and my baclofen.
She also said my auto-immune testing done shows that I have something auto-immune going on. None of my tests she ordered were normal. They were all related to auto-immune and B-12.
We are not sure yet if my B-12 is due to my diet (which it's not--I eat ALL the foods recommended) or my body being unable to absorb it. Further testing is needed.
She wants to see me in 3 months to see what the UMN stuff is doing--and said I should have my elbow checked (it's not carpal tunnel, by the way) and that the problem is also in the right side.
So, if B-12 fixes all the LMN stuff---I'm clear of ALS at least! If it doesn't--we still have to find the cause.
She said she's not a rheumy, so didn't want to speculate as to what auto-immune condition it could be. (I've suspect3ed autoimmune issues for years and years.)
I'm allowed to have my neck fixed, too, if it's surgically repairable--but she still doesn't think it's explaining the issues I'm having.
So, for now, I'm still concerned something is going on--but much more confident it is at least not full-blown ALS.
I continue to be exhausted (moreso when i fall asleep without the bipap) I did tell her I was using it and asked if the settings were okay.
I go Tuesday for another FVC (It's been two months, and my breathing is definitely getting worse) so will let anyone know that isn't just sick of me.
Thanks for the months of support and hand-holding. I'm not going anywhere.
The GOOD news is that my EMG only shows any LMN damage in my arms--which is very possibly caused by very bad fall two years ago. I also have low B-12--which the doctor thinks is accounting for all the other LMN signs. It's within normal ranges--but the metabolism is NOT within normal ranges (no, I don't understand what that means)
So, I now have to give myself B-12 shots and find a good rheumy and a new GP that will actually try to figure out other stuff for me.
That doesn't answer the UMN issues--but at least I feel relatively confident that it's not ALS. Or if it is--it's UMN dominant, which is better, or PLS. I'm in a much better mental place.
Nearly all the bruising in my hand vanished overnight (it was all red, hot an swollen Friday when I woke up) The spot on my leg that bled forever didn't even bruise! My left leg has the cellulitis--but it has also spread to the right leg. My legs are hugely swollen. No clue why. I'm not on any new meds but lyrica--and the swelling was before the lyrica.
MRI results are not in, so MS isn't off the table (but I looked at the scan, and saw nothing but brains).
I had an abbreviated EMG due to bleeding and cellulitis in my bad leg. I had one spot she hit on the right leg that gushed at her. My legs hurt a lot due to both the swelling and the spreading cellulitis. The antibiotics haven't helped yet, but it hasn't spread very much above the outline we marked on it. She did an emergency doppler study to be sure there were no new clots--there weren't. (the tech told me)
I apparently was not supposed to take ANY of my meds that day--and I didn't know that. I took my special blood thinner she'd prescribed, my valium, my pain meds and my baclofen.
She also said my auto-immune testing done shows that I have something auto-immune going on. None of my tests she ordered were normal. They were all related to auto-immune and B-12.
We are not sure yet if my B-12 is due to my diet (which it's not--I eat ALL the foods recommended) or my body being unable to absorb it. Further testing is needed.
She wants to see me in 3 months to see what the UMN stuff is doing--and said I should have my elbow checked (it's not carpal tunnel, by the way) and that the problem is also in the right side.
So, if B-12 fixes all the LMN stuff---I'm clear of ALS at least! If it doesn't--we still have to find the cause.
She said she's not a rheumy, so didn't want to speculate as to what auto-immune condition it could be. (I've suspect3ed autoimmune issues for years and years.)
I'm allowed to have my neck fixed, too, if it's surgically repairable--but she still doesn't think it's explaining the issues I'm having.
So, for now, I'm still concerned something is going on--but much more confident it is at least not full-blown ALS.
I continue to be exhausted (moreso when i fall asleep without the bipap) I did tell her I was using it and asked if the settings were okay.
I go Tuesday for another FVC (It's been two months, and my breathing is definitely getting worse) so will let anyone know that isn't just sick of me.
Thanks for the months of support and hand-holding. I'm not going anywhere.