Update on Neuro appointment

Hi All,

I went back to my neuro yesterday after my hospitalization in May. It was a nice long visit with a lot of conversation and going over labs, etc.

He still wants to wait on DMD/DMM's. He still thinks he can manage this with steroids as long as it is no more than 2 times a year, three tops.

He orderd PT to help with my swimming head and gave me a six month handicapped slip (not sure if it is worth paying for at the DMV for six months).

We did talk about the LP I had from a previous neuro. He said that 4 percent of MS patients are O band negative and that it was probably my luck (since I can't have an MRI) that I would be one of the 4 percent. He said when I go back in the hospital for my next relapse, he might repeat the LP then, so I can get better care than last time.

So, I am praying for complete remission. I have 12 more days of steroids (I will ask for the 5 days IVSM next time) and I am feeling better. Even my cold/sinus infection seems to be leaving.

Yeah for me!!!

[roo613]

Glad you are feeling better and that there is light at the end of the tunnel (welll, kind of anyway)!

[mjan]

HUGS MY DEAR~!

Again so sorry for all you are going through. I hope you get answers and help real soon. Maybe the steroid are helping..yes?

And yes ask for IVSM "next time."

Keep posting so we know how you're doing

Jan

[karinnech]

I really believe that LP's are a waste of time. My neuro told me that if you are not in the middle of a relapse, no O bands will show up in the LP. The spinal headache is definitely not worth it either. I seriously thought that I was going to die when I had it. Try to get the Evoked Potentials test. That test got me my diagnosis.

[CasinoKathy]

Hi Wobbler, glad to hear your starting to feel better!

We have something in common= besides the MS itself- my sx started in 1994, dx in 2007 ..13 years and I see your sx started in 1997 and dx in 2110..13 years.

I don't know about you, but I am just a little miffed (to put it mildly) at the neuros and others that I had seen over those years that missed a lot of things and now I have a weak leg. Hoping Tysabri will help with that, and my balance too.

My neuro is checking on getting me started on Ampyra also!

[Johooper]

How frustrating for you. Personally I dont think 2-3 relapses a year is acceptable without trying dmds.

good luck
Jo

[Red7172]

I am glad you are starting to feel better.

Thanks Ladies,

He is as frustrated as me. Really wish they had done a good MRI before placing the Interstim, but no interstim and I would have to cath, so I am glad I have it.

We can MRI once it needs a replacement. Not due for 5 years.

I don't want to do steroids this long again, ever. I will ask for the full 5 days next time not just three and 50 days of pills.

Today I do feel better but hoping physical therapy will improve my balance.

13 years for a dx was frustrating especially since I am left with many "quirks".

Thanks again for all the love and support.