they always give me a b12 shot when i go in

Write everything down you want to ask. It helps, too, to have an extra set of ears there, too. I take Vitamin D3. More in the winter, less in the summer. Have you had your levels checked? That will help determine what you need. Same with B12. There are some great folks on this site. Roam around and see if there are some good ideas that spark some questions that you might want to ask.

Your neuro will want to know the symptoms you are experiencing. He/she may then want to give you some meds to help. You can check around here to see what other folks are taking to familiarize yourself with what is out there.

It is pretty overwhelming, but you'll be surprised where strength comes from. It can come from unexpected places. This is a safe place where you can always come and vent, unload, or ask any question.

I hope that your visit goes well.

I only have had one episode but it was pretty bad. I started feeling numbness in my left fingertips and within 6 days, it was the whole left side of my body. They had me do five days of 1-hour IV steroids. So I can't really pinpoint my symptoms... I just don't even know where to begin with questions...

You have to be careful with all supplements; even vit D.

I just have to say that I heard "great" stories about Vitiamin D3 cureing MS so I started taking 9,000- 12,000 MG a day; one of the people I heard this from was a nurologist himself (NOT my current one though) who claimed it even REVERSED MS damages! So I started taking that higher level of the tiny pills for about 2 months after I heard that. When my legs just kept falling apart and feeling extremely weak on me; I just thought it was another flare or maybe I have ppms instead of rrms.
I talked with my neuro and he asked if I was still taking just ONE of the vitamin D3 pills? I told him that there was that seminar that I saw in November with Dr. Joeblow who reccomemded 10,000 or more of the supplements for his MS paitents. My neuro said "Why would he do this? He wants his MS paitents to ONLY sit down?! Doses of that level can be toxic for extremities; I truely recommend just 2,000..."

It was only 2 weeks after I stopped such a high level of those pills, that my legs seemed steadier. This is/ was my only difference in my pills; I didn't start the steroids like I planned.

Be careful

I only take 2000. The neurologist said that MS is more prevalent the farther away from the equator and some scientists think it has to do with the sun and lack of Vitamin D so she said it wouldn't hurt to take it but there isn't any evidence it helps either...

Hi.
1- ask for physical therapy, its important to keep what you have.

2- other tests to assess where you are. Like visual evokeness, and others I can't Remember now.

3- course of action, what are we doing next

Keep us posted, Alma

I believe vitamin D plays a big role in MS. I have read two articles in Neurology Journals that said low levels can cause exacerbations in RRMS. I went to a doctor who has been an internist for 25 yrs and heads up an alternative medicine institute that is part of the Harvard Med School hospital system. My levels keep dropping so I have been taking 5000 mg D3 since last low reading 5 months ago. Here is an excerpt from his recent email to me:

"Melanie Jenkin--6/10/57;

01/24/2012 25 OH-VITD 41
09/16/2011 25 OH-VITD 23
03/16/2011 25 OH-VITD 24
04/23/2010 25 OH-VITD 34
01/22/2010 25 OH-VITD 18

Optimal levels likely begin at 32 ng mL; I always shoot for the 40's for anyone with MS; so, I think yours is acceptable and would continue your current level of daily supplementation."

At 18 my legs were collapsing. Very important to get your levels checked one to two times a year.

Good luck,

Melanie

Everyone has responded on their take of Vitamin D, so I'll just try to give you some ideas to discuss with your physician come the appointment.

1. Like Alma said, ask for PT. It is very important that you keep the physical skills that you have.

2. Don't bother to ask what he/she thinks your future will be like - they have no idea what is going to happen to you.

3. Discuss potential exasperation's/flares - what you can expect with your past history of symptoms. Ask how to manage them, when to call him/her and what you can expect him/her to do when they happen.

4. Bring your medical records to your first visit, including MRI films, test results and records from your previous doctors.

5. Be on time.

6. Keep track of your symptoms, there's no need to make a career out of this, but brief notes on your calendar about your latest ups and downs can help you remember problems or changes that you want to mention during your office visit.

7. Prioritize your problems.

8. Come prepared with a list of your questions and make sure the most important ones are at the top of the list. Most regular visits last from 15 to 20 minutes. If you need to talk in d epth about a particular issue, you may want to consider scheduling an extra appointment or phone call so that neither you or your doctor feels rushed.

9. Don't expect your neuro to have time to review a fistful of articles you've printed from the internet. But, if you see something of particular interest or concern, it's reasonable to ask about it.

10. Don't hold back - speak up when your're concerned.

11. Bring an extra set of ears or a tape recorder.

I asked my neuro to add a Vitamin D test to my labwork, and it came back 14. I started taking 1000 mg/day and in three months my level was up to 43. I also take 600 mg calcium to aid in the absorption of Vitamin D.

To Add to what Lynne said I'd want to discuss treatment options and why he thought that DMD would be best for you. It would'nt hurt to read up on the crab drugs Copaxone,Rebif,Avonex, and Batesareon I'd guess he would start you on one of these and I also would check to see what insurance cover'd as far as the meds, they will most likely have a very narrow list. There are other drugs also but It is just a guess on what he will want to start you one. Good Luck and Welcome to DS,
Take Care
Dave

My advice is to remember that not every doctor is a match for every patient. Bring someone with you, because there might be questions you don't think of that they do, or they can help you remember anything you forget after the fact. If you leave the appointment feeling worse then you went in or don't like the neuro's approach, find another one. Remember - you are trusting this doctor with your life - if you're not comfortable with that then find someone you are

I keep a note pad and I laying near the compurter and when a quetion pops in my mind I write it down I carry my not pad to dr when I go..Dr suggusted this for all his MS patients...I have to take b12 shots every month and 50000 ( prescription )a week because my vit d was low again

Cathy

I mean, I'm no Dr. or anything but I'm pretty sure if you've only had 1 episode ur neuro wouldn't of dx'd you with MS. One flare-up does not MS make.

She didnt base my diagnosis on the flare up. My MRI showed lesions on my brain, neck and spinal cord. And my blood work and spinal tap ruled out any other possibilities. Along with other symptoms (no balance, vision issues and sensation testing) she came to the conclusion of MS.

First off I would like to say I love your photo & sorry you have had to join here but most welcome.

I agree with the advice you have been given so far.
I would add to it i take in a list of any issues or concerns in order of most important at top in point form so easy to work through.
Don't expect that he will always go through all of them - but make sure the one's that worry you are dealt with. Take 2 copies of this list with you so that he can keep a copy in his file too (date it too for later reference). The other copy is for you so that you can follow through too & scribble a quick response if you want.
I have actually had a neurologist say that I never told him something & when I said I told you last visit he went back through the file & saw that it was listed for sure. Then he was able to work out a treatment plan too.
Take a friend/partner with you if you can as it can be overwhelming to take it all in for sure.
Don't expect to get all answers at once too.
Take care & keep asking questions too.