Multiple Sclerosis (MS) Support Group

I finally met with my new Neurologist yesterday. He was wonderful, and he's young enough to know all of the latest MS research out there.

Wow, how modern medicine has changed. He went over my entire case history before actually seeing me and then checked with me on "everything." that was unique to my MS. Not a bunch of random general MS tests, but exactly what was affecting me. I felt so heard!

He said that I am going to be an expensive "MRI often candidate" because my lesions are not typical. I have a more spinal type of MS happening, though he showed me a very small lesion on my brain that the others, (even the Neuro that read was responsible for reading it) of my brain. It was a very small grey area...but yeah...after he pointed it out, I could see it.

He thinks that this is the reason for the on and off eye, small area of my left side of my face, half of my head and throat numbness. It's barely noticeable..but yeah..it's there sometimes..

So anyway...to make a long story short, I will have 4 MRI's in 3 mos, 4 in 6 months, and 4 in a year...and that is if I do not get any new lesions.

He showed me the limbicic MRI with the big honking lesion that is affecting me now. He said he has every reason to believe that I will once again go into remission, but he will only give me 5 years with no attacks because I was on the Betaseron for the first 10.

He said that because "my MS" presents itself in my spine and "my attacks" are severe enough to affect my walking each time..he wants to stay right on top of it. He expects a phone call "the same day" if any new symptoms appear from this day forward.

I told him that I want to continue a healthy diet, exercise, keeping cool, and rest each day along with whatever vitamins and natural remedies he has and not do shots at this time.

We came to an agreement. If I do not have a new attack again, no Copaxone. The second I have another attack, I start Copaxone immediately. I say fair enough...It's a deal!

He believes that we have stopped the current attack and said it may take up to a year to regain everything that I lost. Because I went into full remission the last time and it took 3 -6 months to regain most of what I lost back then, there is no reason to assume the same will not happen...we just have to wait and see.

He is going to have me meet with a urologist, get a vit D level check and go on vit D. I am already on vit B12. He is going to run a few other blood tests.

I explained to him that because I had such a severe attack back in 96, I am not afraid this time. That was so so much worse and I became a human pin cushion and test subject by 15 different Neurologists that all dxed me with something else.

Oh, he also said that he is going to watch to see if I need Amatriptaline (sp) down the road. I told him that the one and only time I took that I was sitting in my own drool after just one pill and didnt' like it. He said that he will work with me every step of the way and that he never will try anything without my input and help deciding. He said we are a team...and that is EXACTLY the kind of Neurologist that I need.

I do not believe that doctors are Gods with all of the answers. He told me how to access my health records online too and we talked about different things that I may want to research.

WOW!!

Oh, and no need for another spinal tap!!! Yeah!! He sees the OG banding in the one from 1996. That is good enough..

Also he explained why if I close my eyes I will fall over. He said that our vision helps us balance (along with the messages from the brain to the body part). If we close our eyes we only get the messages and I have a spinal chord injury due to the scar...so the message itself is not enough information to keep me standing.

I like that he explained that in human terms.

The entire appointment took about 45 minutes and he answered every question that I have.

So, anyway...I feel reassured that I have a great new member of my team. I hope you all get that lucky too!!

So now...Remission is once again my middle name...Remission, remission, remission...Yes...think positive thoughts...
Posted on 07/28/12, 02:33 am