This Is MS Multiple Sclerosis Community: Knowledge & Support

[iKat]

Anyone know if Chris has been active on here? I am seeking other treatments and wanted to talk to him to see how he has been doing. ALso looking for a good neuro in Colorado.

[jimmylegs]

last posts were earlier this year re a new baby on the way. not sure if he has been communicating in pms or with members via external emails.

[CureOrBust]

He use to have a web site, probably with contact details.

http://www.chrishasms.com/contact.html

[iKat]

Thank you, but I think he is not replying to anyone. I read back and it I think he stated it reactivated so that makes sense where he doesn't feel up to replying to any emails.

I post on another MS board but nobody there seemed interested in the stem cell treatment so I thought I would come here.

My MS has be not active, no changes on my MRI for 25 years. Suddenly one morning it was thought I had a stroke because my arm went limp and I started slurring then I was better a minute later. Was hospitalized, they found nothing wrong on CT scan or MRI. The random episodes continued but ONLY when I would bend or move.

Finally my MS doc saw 3 lesions on my brain but I am still confused why these episodes of spasms and slurred speech and unable to walk only happen when I get up to move. If I keep walking I am perfectly fine. So I am not only concerned the DX is wrong but would like options for different treatments vs the usual meds that are out there right now.

The first and only relapse I had 28 years ago, I was sick all the time, stranding, siting sleeping... you name it. I was treated with IV antibiotics and was fine for 25 years and my neuro was in the process of changing my DX because nothing happened all these years.

I will add my vit D is super low, I was told it was 8 and should be 70. I feel that played a part as well.

[jimmylegs]

8!! actually d3 level should be more like 125-150, not 70. 70 is a target for bone health. preventative for osteoporosis. not even close when it comes to the immune system.

are you doing any reading on diet and nutritional approaches? I have certain issues with most of the 'mainstream' nutrient approaches out there, my thoughts are all collected in one place here if you care to read: regimens-f22/topic2489.html#p15460

[iKat]

Thanks for that link, very helpful!! I did buy some Vit D3 capsules 2000 and I ended up getting itchy and a rash for the next 3 days so I am afraid of taking vit d3. I was thinking of just buying a tanning bed.

[jimmylegs]

hi no probs

if your d3 levels are that low, you probably want to take a serious look at co-factors. if you take d3 alone, you can exacerbate possible deficiencies of d3 cofactors. you may have a few things to work on in addition to d3.. you think there's any chance you can get some other bloodwork done?

also, best to test drive a tanning bed before committing to purchase. back before i understood nutrition i had a WICKED allergic reaction to 30 mins in a tanning bed :S crazy.

[iKat]

what would I have them test for due to the fact my vit D3 levels are so low??

[jimmylegs]

you can have them test serum zinc and serum magnesium to start - these are things that work closely with d3 and are known to be low in ms. the rationale should be that 1) research shows levels of both are low in ms, and 2) because of their interconnectedness with vitamin d3 (which has already been demonstrated to be low in your case AND which is causing unusual reactions when supplemented) that all three should be monitored to insure proper interactions and absorption.

if they'll go for it, test serum copper and serum ferritin also. esp. if you begin supplementing zinc.

be clear that you do not want to test erythrocyte or RBC values, but serum specifically.

the sooner you have results the sooner you can go forward. well actually, you can basically assume that your zinc and mag are low and just go ahead and supplement - BUT, having the numbers before and after you start supplementing is good data to have in your records. once you have copper and ferritin data then you can make decisions about how to roll out zinc supplementing over the longer term.

[iKat]

doubt my neuro would test for it and I dont really have a primary care doc, he wont treat me because of the MS and I am currently looking for a new primary care but a little sick at the moment to go doctor shopping.

[iKat]

I think I am going to try and pursue stem cell treatment somewhere. I was dx over 25 years ago, no relapses, no symptoms. I just skipped along life carefree and the worries of MS. Things have changed all the sudden and reading my last MRI report and my current symptoms have me concerned. My neuro wants me on the new BG12 pill or something like that. Reading the side effects of it arent nice at all and who knows how effective. I have a 5 and a 6 year old who need me, I know I need to go for a more extreme treatment to be able to be around for them in years to come.

I am quite sad and even asked doe medical marijuana card. I dont even drink, much less do this but this is what it's come to for me.