Supplements to consider

[jenphilly]

Hi all -

I thought I would share some of my experience with experimenting with supplements the last few months.  

For about 6 months straight I was having spasms in my calves and hands.  I'm a bit reactive to most meds, my neuro even has me using over the counter sleep aids because I am so 'sensitive'...  

So, here is what I've found and had some great luck with.  Doesn't mean you will get the same results, but wanted to share, just in case anyone else was having problems.

For the spasms, I added (2) magnesium (400 each) and (2) potassium (99 each).  Both of these are the norm you'll find at any pharmacy or walmart.   Hand to the heavens, within 2 nights of adding / increasing these supplements my muscle pains were no longer keeping me awake at night.  I was beyond amazed.

I also have some of the neuropathy / buzz in my left arm and hand on even my best days and in my right hand on bad days.   I have been taking Bioastin (red microalgae) and tart cherry supplements.  While that tingle has not resolved entirely on bad days, it is substantially reduced.  

I also take 3 tumeric capsules a day, plus other 'normal' supplements, so can be combination of things, but just wanted to share with everyone my positive experience without using prescription meds.  

I am also on copaxone, so please don't think I'm advocating going all natural...  but do believe supplements are a great compliment to a DMD.   I also know I'm very lucky to have found a neuro that is supportive of adding supplements versus writing another prescription.  

Again, I may be the oddball out and no one else will have a positive response, but with the hope that someone else can see benefit too, I wanted to share :)

Hugs to all!

Jen

PS - Just in case anyone was wondering, my full list of supplements in addition to above is:  Bioperine (black pepper flower extract), Vit D, Vit A, daily without iron, folic acid, calcium chews (caramel flavor is actually quite yummy), B12, fish oil...  think that is all of them :)

[HVAC]

Tumeric is good for glutothione production.

Alex

[Khiba]

Thanks Jen for the and  info on combination of tumeric and bioperin. I will search for those together. :)

[jenphilly]

Jessica -

If you add the tumeric, also take bioperin with it (its black pepper flower extract) that helps with more effective absorption.   There are actually supplements you can buy that have the two combined :)  

Zoe - the black sour cherry is probably the same.  But read the label or ask where you found it, if its in the tart cherry family.  Cherries are classified as sweet or tart.  Most cherries produced for the supplements here are usually montmorency or balaton cherry.  I did a quick search for black sour cherry supplement and the tart cherry supplements came up too.  Not 100% positive they are the same, but certainly does sound like the same product with different names on each side of the Atlantic :)

Jen

[Khiba]

I am so glad you brought up supplements.
I have had a neurologist explain to me in detail (way over my head)  that calcium is inflammatory where as magnesium in anti inflammatory.  Calcium is involved contractions of muscles and magnesium is involved with relaxation of the muscles. So to be cautious with additional calcium in the diet. Especially without additional magnesium to balance out.

Personally I take a lot of magnesium and find it helps a lot with muscle spasms and stiffness. The type of magnesium I take is magnesium glycinate which doesn't cause "the runs." Magnesiums like mag oxide, mag citrate are not absorbed as well and are very good as laxatives. So if you need a good laxative, load up on magnesium citrate. ;O

I also take CoQ10 as some of my medications like Valium and Gabapentin lower the CoQ10 in the body or block it or something and adding it back in is a grand idea. This supplement is also highly recommended for folks taking statin drugs to protect the heart.

Additional supplements are a weekly B-12 shot, multivitamin without iron, EPA-DHA 1800 mgs a day and occasionally digestive enzymes and probiotics. I add tumeric to my cooking and am tempted to add it in supplement form after reading how good it is for you.

Would love to know other peoples supplement regimen.

Jessica

[zoefromsussex]

Hey Jen, I haven't been able to track down the tart cherry in the UK but I've seen one called Sour Black Cherry...do you know if it's the same thing? I'm trying to compile a basic list of supplement's to start trying. Have got vit d3 (5000) magnesium, calcium, evening primrose oil, flax oil & omega 3 on the list. Is that about right?

[HVAC]

I take CoQ10 because NIH is doing a study on it in PPMS. I take Milk Thistle and am on a Glutothione diet because another study is being done on Glutothione and PPMS here and in the UK. Glutothione is made by the body and Milk thistle helps with it. I talk to my Doctors about all these supplements. Personally I am fine on vitamin levels so my Doctors just say a multivitamin. I was on all these vitamins and supplements and my MS Specialist told me they were doing more harm than good.

Alex

[Lulu54]

thanks for sharing all of that - I know a lot of people who swear by their supplements (most of whom do not have MS).  You make the important point to do this with the knowledge of the doctor- that is so important to track all the meds, including the non-prescription ones.

keep feeling good,
Lu