Neuro Update

[notme]

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.

 

[Ms. Pie]

Very promising Patty! When do you find out confirmation of the MRI and such? I'm so glad you're feeling better Sweets. It's been awhile, eh?
Love you,
Marta

 

[susanf]

That's more good news than bad. It might be ironed out for you and you'll have better days ahead!

 

[notme]

HI

Not sure on the MRI. I asked to have them mailed to me. But I think the doc would call or have her nurse call if something sinister is on the MRI. (It was to check for MS)

I'm not feeling better physically, Marta--actually worse physically--but better mentally. I've had a fever and vomiting since Wednesday. The cellulites is causing the fever and leg pain, I guess--the nausea, not clue (phenegran isn't helping it)

But--we all know mental effects our physical, so at least I'm less depressed than a week ago.

I went through 10 years of symptoms like I'm having now--swollen legs, infections with no cause found or looked for--and I'm almost sure no one ever ran a B-12 test. She said it's likely causing what I've assumed was diabetic neuropathy for YEARS.

I'm a little worried about auto-immune anything, because the treatments for most are worse than the condition. Ever hear those commercials for RA? (My sister has it, so did my grandmother) and the side-effects of the meds terrify me!

But--my main worry was full-blown worsening ALS--and now I don't think that's it--and neither does the neuro. She and I both still want to find out WHAT is causing all the UMN issues I have. I asked if it could all be in my head (the UMN) she said no...but to see how or if it progressed over the next 3 months and if the B-12 helped all the LMN stuff.

The worse I felt, the more i became to wonder if ALS was even a remot3e possibility, as I generally really do feel like death warmed over twice.

Limbo where no one knows for sure really does drive me nuts, so I'm going back to treating symptoms as they pop up. I'm going Tuesday for the FCV and to have this cellulitiis checked because it's getting worse (but hey, I'm not able to stay off my feet-so how can it get better?)

I worked today and was in so much pain I just wanted to cry. My two students said I was grumpy. But--on the other hand, I got to show them what cellulitis looks like!

In all honesty, though, if Mayo couldn't figure me out nearly 10 years ago--I don't hold out much hope for any answers now, either. I now it's not CIDP or neuropathy, so those are off the table.

EMG wasn't normal--but not "too" abnormal to shout ALS.

I just have to begin to feel better physically because I can't function, literally, in my business until and unless I do.

I was hoping for some nice, simple answer to all the jumbled puzzle--and that's not happening--unless B-12 really can cause all of this stuff--the no energy, sick, weak, exhausted, falling, etc.

She does think the hand atrophy that is progressing may well be an ulnar nerve damaged (so that's good--because it might be fixable) if it hasn't been left too long.

My anger comes from the fact that I notified my doctor as SOON as I noticed I was losing the use of it--and no one did anything to try and find a cause til April--almost 2 years from onset.

I have to take up Aly's philosophy--just accept no reasy answers are going to be found and treat what comes up as it comes up, like this cellulitis that popped up literally overnight. I didn't KNOW it could be caused by MRSR! I don't know if i should be tested or cultured or whatever.

I told my doctor 8 months ago about a sore that kept getting larger and woudln't heal (It took 5 months to heal) and he said "Use hydrocortizone) but nothing else.

The cellulitis is by my ankles on both legs. They are very, very swollen. It's a minor thing--my fever is low--but is that causing the vomiting? See what I mean? Too many things unanswered--and my GP just plain sucks.

I don't WANT to go rheumy hunting.

Good things--found Pain Doc that will write my scripts--even if I do have to go in 2 x a month at $60 a pop
Good Things- I don't have classic UMN/LMN ALS
Good Things- I don't have any new clots in my legs
Good Things- ALS GA sent me a bi-pap

Bad things--I don't want surgery--and it's the only way to fix my elbow (if that's the problem--she is guessing it's the source)
Bad Things--I don't want back surgery--as I don't heal well from a simple cut, let alone cutting me OPEN
Bad Things--I'm still falling....WHY?

So--the "good" is better than the bad--but the bad isn't getting better and has no end in sight. I can't stop teaching the few classes I'm getting to have surgery on my neck or on my arm. (though I'm seriously considering it!)

You two are the best. (along with several others) I am in a much better mental place. I just wish my mind could shut down so I couldn't think for a week or two

 

[notgivnup]

notme.....Limbo Land is an ugly place to be. I was there for years..The decisions you have to make will all work out for the best in the end. Leaving no stone unturned. I can relate, in my journey to solve the mystery I had 3 coronary stents 1 yr apart, spine neck surgery for herniated disc pressing on spinal cord c5-6, then the B-12 injections daily, rheumy(nothing there)..so, I soooo understand, but maybe just maybe that part about some auto-immune tests not being right will lead to a good outcome. Pray for patience it helps. Think....."No stone unturned!" Holding you in my thoughts.

 

[olly]

notme,keep your chin up as its sounding less likely to be als and maybe something treatable.
you do seem to have alot going on all at once,its easy to think everything is related when in fact it is not.
with als looking like it maybe out of the picture then i think you should go for the corrective surgery..........you have nothing to loose and it may even help with your pain ect.

 

[notme]

Brain MRI is clear except for sinusitis. Legs are a bit better. Redness is going down at least. But, I still have no balance and am falling. And I'm still constantly nauseated.

And, no, I don't think it's all connected. That's the problem. I'm never easy to figure out because when one part causes issues, other parts decide to join in on the fun.

Missed my FVC==I had the dates wrong--but it's not high priority, as I am fine as long as I use the O2.

Neck surgery is possible--I just hate the thought. My body doesn't like anesthetic. Definitely have to get the arm fixed, though, and see if thast and the B-12 makes anything at all better. It sure can't make it worse!

Thanks guys