what kind of vitamins is everyone taking and other questions????
Hi- I was diagnosed with MS early oct after optic neuritis> MRI brain lesions> and positive CSF. MD told me to start taking multi vit, CQ10, folic acid, vit C, B12, fish oil . When I asked about dosage he said to read the label on the bottle. I started taking all of those, but may be taking to much. For example was taking 1000 mg vit c and other vit dosages seemed a bit high after investigation. Then I read that certain vit with MS can be detramental. Read on MS society web sight to take a multivit and eat well balanced diet. Also, I started on Copaxone first week of Jan. 2 weeks later had l'lermettes sign, numbness in lower half of body( then took steroids iv 3 days followed by medrol dose pack) then 2 weeks later developed mild drop foot on right side( followed by 2 more days of steroids and medrol dose pack.) Within about 1 week the footdrop and numbness, and shocking sensation had all cleared. This past week am having slight l'lermitees (spelling?) sign, but otherwise feel great. Could I be overdoing vit's and boosting my immune system too much? Also have started working out with personal trainer once a week to get some workout ideas. One more question- My MD says that each time I have an exacerbation, no matter how frequent, that I will need to have another MRI. Are other people having to have so many MRI's?? Thanks for any input!!
Re: what kind of vitamins is everyone taking and other questions????
HI sodapopper, welcome to our board. Im sorry that you had to join the ranks of the newly diagnosed, but youre in a good place here- lots of support and most of us have been "there" not too long ago.
You asked some really good questions and you also seem to have alot of information and some good ideas of what you need to be doing. Let me start with the MRI question. I have them every 6 months. I see both a Neuro and an MS Specialist, who both concur that its necessary to do this, but not because of relapses as much as being newly diagnosed and having only started Rebif 14 months ago. It takes all of the DMDs (your copaxone included) a full 6 months to start working. Assuming it is working for you, you cant tell without an MRI. That being said, it is NOT unusual for new sytmoms and even relapses to happen during those first 6 months. At the 6 month point, you should have an MRI to look for new lesions. Lets assume they find you stable at that point and you are starting to feel good on the copaxone- youll want another MRI at the one year mark, to both check for new lesions and be able to verify that copaxone is working for you...the big question which we toss around quite often here, is when a person is on a drug (like me and Rebif) and they have been stable for over a year (like me), is it the Rebif which is working, or is it that the disease is just inactive and Im in a 'good place' with my MS. This is retorical, since no one has an answer; but I have to admit, prior to Rebif, I felt awful, on it, I feel great and my last 3 MRIs didnt show anything new...so therefore, Im a believer in the drug.
Now, as to the vitamin question. Youll never get a straight answer on this from anyone medical. I could suggest that you get in touch with a nutritionist who knows about MS and get some suggestions. I can certainly tell you that the idea of overstimulating your immune system is BAD, while supporting it is GOOD. Finding the balance is tough. Alot of us discuss this, and throw out ideas- some work for some people, while not working for others. For instance, I take a multivitamin which supports both eye health and cardio health- I get all my supplements in a good health and vitmain store- I do not buy any of them in bulk, as they go bad too quick, and I dont buy any of them in a grocery store or warehouse club.
I not only take the multi- but I take 3000 mgs of Vitamin D3 as well, d3 is shown to mimic the sun and be absorbed into your body...its important to have a blood test and get your vitamin d levels checked once in awhile, because you can take too much of this vitamin.
I take fish oil too. Make sure that the fish oil you take is pharmaceutical grade, and is lead and heavy metal free- it will say so on the package. Nordic Naturals is a well known brand name. I take 2000 mgs of this a day. BUT I also take Omegas 6 and 9. (fish oil is an omega 3). I take evening primrose oil as well as flax seed oil...the balance of these omegas is supposedly to help both inflamation, brain health and hormonal balance. Is it working? I dont know. I have very bad tingling in my fingers and hands which NEVER went away- it was my original symtom. I think this helps, but IM not convinced its going to really make a difference. I also take Vitamin B12- and Tumeric, which is a natural antiinflamatory- probiotics for intestinal health and to prevent yeast- as well as calcium supplements. About 1000 mgs a day. I take handfuls of pills twice a day and im not entirely sure if they are working, but I can tel this; in early Janauary, I had surgery. I was told to go off all my vitmains for a month prior, because many of them can thin the blood. When I was off of them, I noticed my energy levels were low, I felt less "in control" then usual...about 2 weeks after I started retaking them, I startd to feel much better as far as that goes...so I do believe they are doing something.
Be careful of taking extra vitamin C if you are taking a multi- in fact, always take into consideration what the multi has in it, before supplementing more. If the RDA is 500 mgs, and the multi has 450 mgs, you can take another supplement in a very low dose...but you dont want to supplement it with a 1000 mgs dose, or youll OD on vitamin C..... Same with all your vitamins. Fish oil is one which you cant really hurt yourself on...same with many of the B vitamins, because your system will flush out what you dont need, but D3, zinc, E and a few others shouldnt be overdone. SO, read up on what the FDA recmmends and try to go accordingly with that. OR< talk to a nutritionist. They know so much about this stuf and can research it for you as well. Many of the vitamin stores will also research it for you, specific to MS...they will tell you what the maximum or recommended dose of many things are and you can figure it out on your own...alot of it is trial and error to see if it helps at all. For instance, I stopped taking Vitamin E...it wasnt doing a thing for me. But, I added Tumeric, which works better as far as inflamation control (for me).
See how confusing this all gets? One last thought, there are hundreds of posts on this related to MS on the healthboard. Use the search and put in vitamins or supplements and MS...bet youll get more info then you bargained for! And if you have specific questions about certain vitamins or supplements, there are some really knowledgable people on the supplement board of Health boards, you can post there with questions...and of course, here, we have our own residents who seem to know alot more then the average MSer about dosages, suggestions and ideas...shout out and continue asking questions- we are here to help however we can.
Re: what kind of vitamins is everyone taking and other questions????
Ask your pharmacist to look up all your prescriptions, let him know if he doesn't already, about the MS, and ask about the different vitamins and supplements, and how much to take. My pharmacist is extremely helpful in this area. He tells me which things probably won't help a bit, and which require a much larger than recommended dose (CoQ10 and fish oil) to get the desired benefits.