update, vit D, emg, mri, new neuro, LP next week - oh my

[RazCarver]

its been a while. I still read posts every day but harder to post from my phone. anyway, this new neuro that i saw in july and then again today. i like her. She did blood work and Vit. D is low so they had called in script for that a few weeks ago. had EMG and nerve conduction tests. shows pinched nerve in left side of neck and left arm. thought she would pawn everything off on cervical stenosis that showed up in last MRI in 2011. but she didn't.

neurologist talked about what problems cervical stenosis would cause and it could explain some of the new things going on, she had me to the normal few steps across room, finger to nose, hold out arms and right arm worse tremor. the stand with feet together. HA, none of the things i can do.  had new MRI too. She says MRI just doesn't say MS to her.

Then she went on to talk a lot about PPMS and  how it is different.( nothing that I had not already learned from posts here) so LP is needed. I go Tuesday to have it done. I'm a bit, ahhh ,stressed about that,but it needs to be done. hopeful it wont be a problem. strangely enough I'm hoping it will at last provide some answers. not going to hold breath on that.  

I went in worried I was going to be dismissed as pinched nerve in neck, but i got some honesty i think. Neuro said that the neck stuff doesn't explain all that she sees going on. she is trying to get me into some PT for balance, and said they might want to try a walker. yeah like i could find a job that way.  truth is my friends are probably right - its time for disability, but but grrrr. anyhow, that was off topic.  Neuro also is requesting a swallow study and eye exam.  

I think this Doctor has at lest made me think all docs not so bad or cold.  Oh btw, the clinic told me there is nothing they can do for me and no need for them to see me again, oh well maybe for scripts so made them for 6 months and see ya in 6 months. really thats fine with me but it kind of felt bad to be told that. we can't help you so go crawl under a rock somewhere. sigh, ha.

my follow up appointment isn't till February, I can't complain, she sees me for free or whatever grant thing they have. I'm glad she didn't just drop me. and she said if the LP comes back normal then it might be multifocal syndrome....i'll google that but i guess its from different things creating the problems instead of just one thing.

well, thats whats going on with me, thanks for listening, i needed to share that. now off to search posts for LP advise. :-}

Raz

[RazCarver]

thanks everyone for your support. I have no idea how a best answer got posted. i think they shouldn't even have that option on this site.  oh well.

hey Kelly, disability is hard to get anywhere i think. without a diagnosis is harder here. so i'm told. I have only had brain and c-spine MRIs.  I did have lower spine to check for piniched nerve in 2007 or so. maybe were neuro was thinking I have arthritis in spine? I know i do in my neck now, but its the same hospital so she might have access to the old MRIs?

regarding PPMS she explained RRMS and how it comes and goes but PPMS comes and just gets slowly worse. that there was no treatment other then PT, meds to help with pain, spasms and such.  how PPMS presents differently in MRI and symptoms start out different. not usually with balance problems like i have but it could. its the leg weakness and that the right side is worse, and right hand tremor that seems to have her attention. I'm glad because thats my concern too. however its the falls and the right leg just not being there sometimes that started first.

after she shared all about PPMS she said don't go looking up a bunch of stuff about it until we know what the LP finds.  we could be back at square one.  

so will see but hate waiting till feb to find out.

[SarahL2491]

yeah, my neuro who did my totally painless LP, pushes caffeine, I had to drink 2 cans of coke before I could get up from a lying position, that was tricky but the straw helped!  Sat for 2 more hours (had an infusion) and 2 more cokes, then some aleve and drove home and was totally fine

[kwarendorf]

Don't sweat the LP. The worst part about it is the tizzy you can work yourself into worrying about it before hand :-)

Drink lots of fluids before and after and spend the rest of the day lying down. You'll be fine :-)

Kyle

[anon07072023]

I'm glad you like this neuro. At least she's just not stuck on one thing and she's open to whatever might be going on with you.  
Is it difficult to get disability in TN? Hey, if you need it - you should try to get it. What did she say regarding PPMS - did she say types of symptoms or how it presents in the brain?  Also, I don't remember if they did spinal MRI, too, on you?

Good to see you on here - sorry you haven't found a job, yet. Hang in there.
Hugs,
Kelly