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Old 03-05-2012, 07:01 PM
katvar katvar is offline
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Join Date: Jun 2010
Location: Western Kentucky
Posts: 220
Shocked by a caring VA doctor

After waiting 11 months, I finally got to see the neurologist. I was in his office for 2 hours. He was incredibly thorough despite having other doctors records he repeated several neurological tests. He wrote down everything I said - listened and double checked things.

Then he told me the most shocking thing - my meds aren't working. I didn't know I had the option of feeling better, even a little bit.
He did a lot of blood work to make sure everything is covered.
Set me up to get IV solumedrol treatments for the rest of this week (locally - the VA is an hour away).
He also set up an actual treatment plan and if I don't improve he will quickly refer me to an MS specialist in Nashville.
He told me to call him if anything doesn't feel right - don't wait. The nurse gave me a direct number to call.

I am just shocked by the fact that I have choices and I might actually feel better - even a little. I have gotten progressively worse since April 2010 and thought that was how MS was.

I hope this isn't a pipe dream
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Old 03-05-2012, 08:44 PM
gomer gomer is offline
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Join Date: Aug 2009
Location: Mich. RRMS 1/26/2010
Posts: 2,634
Congrats katvar......

No, I do not think its a pipe dream, good caring docs even happen at the VA, once in while. Good luck with your treatment plan and hope you feel better soon.

Gomer Sir Falls-a-lot
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Old 03-05-2012, 09:43 PM
Scooter24's Avatar
Scooter24 Scooter24 is offline
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Join Date: Oct 2008
Location: Charlotte NC
Posts: 1,173
Congrats for finding a good one, as Gomer said there are some out there. Your nuero sounds much like mine. Keep him, remember he can open many doors for you at the VA for other specialties, O/T , P/T etc along with paper work for claim. , basically all mine does is say do it and they do.

What meds are you on now?
Plan for the future, but not too hard; itís not your decision anyway
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Old 03-07-2012, 06:38 PM
katvar katvar is offline
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Join Date: Jun 2010
Location: Western Kentucky
Posts: 220
I currently take Ampyra, Provigil, an anti seizure medication that I can't spell, and vitamin D.

He is switching me from Copaxone to Rebif and also prescribed medications for my migraines. He was agreeable to starting me on a lower dose of migraine medication since I fall asleep pretty easy on those things.

He prescribed solumedrol infusions. This is my first time having this treatment. His nurse and the VA arranged for me to get the treatment on fee basis. They took care of everything and within 24 hours of my appointment I received my first infusion.

As I was leaving the cancer care center where I get the infusions today I commented to my daughter that it felt a little weird to have everyone being so nice and helpful.

The dr at the cancer care center came and talked to me. He had looked over my file and agreed with my new treatment plan. The neuro and this guy are not holding high hopes that Rebif will work for me.

I have learned so much about MS this week - I am surprised how ignorant I was. The nurse even helped me to meet someone else with MS who stopped and talked to me.

Everyone says the steroids give you a big boost - I have finished day 2 with no energy change. Can't wait to put the children to bed and follow suit. I think I might be walking a little better though.
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