Neurologist wants to send me to Vanderbilt

[RazCarver]

the neurologist office called yesterday and want me to go to Vanderbilt for 2nd opinion.  I was told it would be 300 deposit and  150 for followup visits.  I have no insurance or income but Vanderbilt has some help, I think I should try but if I pay for any medical stuff it will kick me off project access that gets me the help here in town.

the truth is my neurologist doesn't know what is wrong. She says my MRIs don't say MS to her unless its the type that presents differently. my LP was negative. blood work negative for RA, Lupus, and all the other stuff she checked for. vit. B is fine. vit D3 is low and am taking a script for it.  the neurologist said the tremor in my right arm " could be just essential tremors. that made me want to growl as i have a friend with essential tremors and there is no 'just' about it. i see the frustration and disability she has. the ataxia she says could be genetic, but there is nothing they can do about it anyway.

my PT for 4 months has helped a lot.  they used the Berg Balance test. in January I  got 17/56. PT said i shouldn't be able to walk. I told them I didn't walk I just bounced off walls. HA!.  now I have 42/56 and told that is low risk for falls. still a high risk on unlevel ground. I now have a wheelchair if need to walk a lot. I also have AFOs now too. they help a lot.

neurosurgeon said there is a place in my neck that pinches on a nerve if I move in the right way. but it would cause pain in left side of neck and shoulder maybe in left hand but not anything else. I could have told them that already. funny they didn't think it would cause spams in neck or back.

I guess I'm just venting but I also wondered if any one here has been to Vanderbilt and what they thought of it.  I know the VA is there but I wouldn't be going to that part.

thanks for listening.
Raz

[anon07072023]

I'd say go to Vanderbilt, especially after Dennis shared his experience with them.  It sounds like they're on top of things.  Somethings definitely going on and you have to figure that out.

Good luck driving if you go - like you said, maybe find a friend to go with you.

[RazCarver]

Thanks Dennis. it's a two hour drive but with cruise control maybe i can do it. and if it's timed right might be able to have a friend go. I don't often drive across town because its not really safe for me to. but since PT it is some easier to drive.  

[Sailorsong]

I go to the VA in Nashville and they do a fee based consult to have me seen by an MS Neuro at Vanderbilt. It was only by going to Vanderbilt that I got my DX for PPMS as I don't present normally for MS via tests either.  AT first my MS neuro was going to chalk everything up to Sjogren's Syndrome (As I have that also) except that some of my symptoms could not be cause by that. SO he ordered a 3T MRI of my spine which cinched to DX.

So far I am very happy with my Neuro though I have very limited access to him (VA RULES).

Dennis