I had a follow up appt with my neuro today to discuss DMD Avonex. At my last appt. he wanted to run 2 more blood tests for this appt., ANA and a Vitamin D test. Well I guess you can guess from my "topic" what my result was.
He is starting me on injections - and not the one's we had discussed. Prior to me starting my Avonex he wants to get my Vitamin D up as I am VERY low - Sorry did not ask my number. He is setting this up with my primary. I think he said weekly injections.
He aid low vitamin D was not uncommon with MS. Any thoughts on this? HAs anyone had low vitamin D?
He is trying to cut my Topomax (topamax) and Tegratol as well as I have had some cognitive issues come up and he wants to see if it my brain lesions or med issues..so that is an experiment to try as well.
The plan is to strat Avonex as we earlier discussed but thes steps are first important to do.
Any thoughts or sound familiar of Vitamin D linked with MS? I keep reading that it causes MS? will correcting my Vitamin D fix the MS? (I am doubting)
My vitamin D was at 17 so I'm on 5000iu everyday for 3 months then a recheck.
I didn't think they did injections? I thought Vitamin B had injections though. I know my Aunts have vitamin B injections frequently.
Either way, Vitamin D and Vitamin B deficiency has been linked to neurological issues.
Here's an article that was sent to me by my cousin who is an RN and had extensive conversations with doctors who are treated advanced MS with super heavy doses of vitamin D. She swears that it will help.
I have MS and a Vitamin D deficiency as well. When my neuro mentioned it was very important that I take a minimum of 2000 units/day (which is the typical dose), I, like a jerk, scoffed "Aren't most Americans deficient in Vitamin D?" to which he replied, "Yes, but YOU especially and people with MS in general". Oops. I've been taking 4000 units/day since my diagnosis about two weeks ago.
As for "fixing MS", it's not a cure but some studies suggest that it reduces the number of relapses.
The link Sidesteps posted is a good read! Makes me wonder though. MS doesn't run in my family, either side, whatsoever... but I have spent a majority of my life in the Northeast, relatively far from the equator, am perhaps Vitamin D deficient as a result (or because I was a moody kid averse to sunlight), and did have the Epstein-Barr Virus (mononucelosis) when I was 19. Hmm.
Yes, there is a link between MS and Vit D def but they are not sure how it's related. It's very common with MS'ers to have low D.
My levels were in the teens when first tested. The to be in the normal but low range is 30. Anyway was put on 10K units a day for 2-3 months then down to 5K units a day where I am at now. My levels are now in normal range.
No one w MS in my family and I was raised in TX and California. Lots of sun from childhood on so go figure.
No, bringing you vit D levels up does not cure or "fix" MS. :(
I was low in vitamin d also. I had to take 50k for a month which I thought was a lot but, in my research I found out its not a lot. I'm not dx yet but, I'm in the process and getting closer I hope. I just found out that I'm low in vitamin b now. I'm on 1000 mg of that. I also heard of injections for vitamin b but not vitamin d hmmm.
"Yes, there is a link between MS and Vit D def but they are not sure how it's related. It's very common with MS'ers to have low D."
Thanks jujuminx for a statement that seems to sum up the D/MS connection.
I like Sidesteps article reference as well.
Vitamin D supplementation can help PwMS. It’s no cure.
When the doc found out my vitamin D level was low she started me on a Rx of a weekly 50,000 IU capsule. After three months I was switched to 2,000 IU twice a day. When the periodic blood tests showed restoration of vitamin D levels had progressed my dose was decreased to 2000 IU daily. But after six months of the lower dose my blood level started to fall again so...
2000 IU twice a day is my maintenance now. I'm not sure how much the D helped my MS because I made several changes in lifestyle and medication during the two years it took to fully correct the vitamin D levels. Which brings up other points.
ARE YOU COMFORTABLE WITH THE DELAY IN STARTING YOUR DMD? This happened with me too but it was because I started having cardiac symptoms before I could get the Copaxone on board. The docs wanted to resolve that first. They just couldn't decide what was causing it. They kept adding drugs that did nothing but add symptoms.
I wasn't comfortable waiting longer than 6 weeks with Copaxone paid for and in the ‘frig (and started to whine). I knew the delay wasn’t critical to my overall status with MS - but TO ME - starting a DMD represented putting a personal defense against MS into motion. It empowered me then and continues to today.
The cardio let me go ahead with the DMD once he decided my symptoms weren't a serious health threat. It worked out fine for me. You may want to talk to your doc again and think about how comfortable you are with delaying Avonex treatment.
BTW, my cardiac type symptoms resolved when we
decreased my calcium (had been taking it for osteopenia),
decreased my vit D (taking it increases calcium absorbed),
stopped a calcium channel blocker (blood pressure pill),
stopped HCTZ (a water pill) and
added a low dose beta blocker.
Yeah, it was another long process of discovery!!
Patience is apparently a learned virtue.
IS IT (insert symptom of choice) THE MS OR THE TREATMENT? I think it's great that your doc wants to check out if your cognitive problems are drug vs lesion caused. The lesson I've learned best about MS is that it is never stagnant so its treatment can't be either. Balance is everything. I hope I achieve it for a few days in a row somewhere along the line. Just kidding actually. My MS is pretty stable. It’s aging that keeps me in flux these days.
OR SOMETHING ELSE ENTIRELY? Lots of my 'fatigue' is related to a sleep disorder. When it's in high gear I start noticing cognitive changes. Thinking becomes a high intensity workout. And that’s just one example. Stress is a champion at challenging cognitive function too. etc. etc. etc.
INJECTIONS? Vitamin D can be injected into muscle, often in much larger doses (like 300,000 IU) but I don't think they inject you weekly. Maybe your doc wants a faster result and that happens with injections? IDK I'm not really familiar with that route. I just know it’s possible.
Guess we should have picked an easier disease, eh?
Hoping you take another step toward balance soon.
Wow, now there's something that can really help you feel better if you're low. (Remember - B12 deficiency is a major mimic of MS.)
Be sure your B12 supplement is delivered as methylcobalamin though. Otherwise your blood level might come back fine when you still feel not so fine. In fact, we had a member post recently about this very thing. (She knows she doesn't have MS now!)
B12 as cyanocobalamin (CYANO like in cyanide) is what you'll read on the majority of OTC B12 labels. It's B12 alright but it isn't near as available as methylcobalamin.
Take your B12 supplement sub-lingual (under the tongue) or by injection (necessary if your gut doesn't absorb) just make sure the label reads B12 as METHYLcobalamin.
THANKS SO MUCH...I can say I am comfortable with delaying DMD..We still have a plan but a few speed bumps along the way..I want to be sure everything is well in place before I start too and "we" are doing this as a team..I told my doc when we discussed this last appt.
I do not fit in the exact MS picture that some people do......I have the symptoms, lesions and everything has been excluded..My MRI is and has been stable ..and he has explained I can and may remain this way OR may not, so we discussed tx. he is not oppossed....
As he stated I do not have a concrete dx. but as he does tests, reveiwed everything in past, everything is pointing to MS and as he says my history of MS (as he has felt he has very little doubt) and when he saw my level of Vit D he did not seem surprised
So maybe this is MY MS and this is as far as I will go but I do not want to wait to find out...and he said okay...Avonex it is but let's get a hold on fix these these things first :o)
Any side effects from Vitamin D injections? I was wondering?
I never thought it was a cure :o) Silly articles they throw out there...I know it can help ake you feel better...
Thanks again so much..I have other plans to adjust stress and all those mentioned above too
I believe vitamin D is actually a hormone. I guess it's like the 'Is it a fruit or vegetable' question. Or trying to decide what Pluto is if it isn't a planet. People know it under this name and it stays - for now anyway. You will find it sold as D2 or D3. The D2 is from non-animal sources.
B12 is one of a group of vitamins referred to together as the B-complex. Some supplements contain all of them (or at least a majority). They are also found numbered, named and sold individually.
Low vitamin D is a factor for me as well. I wasn't offered injections, but I did take 50,000 iu prescription for three months. After recheck, I hadn't gotten any better, so we did it again for another three months. Still, my body can't seem to absorb. So, then they stopped trying to fix it. My B-12 is ok though.
I know there is always more research, being done. I am very interested in seeing what the connection actually is. Please keep us posted on how you are doing.
My vitamin D was depleted. I was on 50,000 units a week for 3 months and I am now on 4000 units a day for the next couple of months and have to get re checked.
I do know that vitamin d deficiency is common in people with MS. My sister switched neuros after I told her because she said her neuro hadn't checked for anything including yearly/bi-yearly MRI's. She asked her new neuro about it and her neuro ordered blood tests and she is also vitamin d deficient.
I do know that since I have been on the vitamin d I feel better, I am guessing some of the rotten symptoms I was having were due to my depleted vitamin d. Don't get me wrong, I still have all the old symptoms and I am still having the same problems as before but some have went away or are at least better right now.
Hopefully you will feel better on the vitamin d! :)
Hi Jibby, I take 2000 iu vit D daily (down fromm 4000) and 100 vit B-12.
I know my B-12 was slightly low, but I have no idea what my D level was/is.
I've heard of some people noticing a big difference after starting on new vitamins, but I think you'd have to hit me over the head with truck load before I'd notice any difference...Sounds like your doc is planning the truck load for you, LOL.
I don't know anything about vit D injections, but my Dad has been getting B-12 injections for about 10 years now.
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