Was last here 15 years ago.....

[Sunshine]

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How wonderful to hear from you, Mark. Glad to have the scientific papers and some details of your travel.

My question is why do so many of us have low Vitamin D?

ANN

I am thinking lots of non MS people are low in Vitamin D, but that being low on D if you have MS has more apparent impact? Mark?

[xo++]

Hi ANN,

Good question. It could be genetic ... and we know there is a significant genetic component to MS ... e.g. identical twins are much more likely to contract MS if their twin is diagnosed (~25% chance if twin vs. .01% chance in the general population).

Yes Sunshine but it does seem to be a cause of MS (or of some MS) simply because regions of the earth which receive less sunlight have a significantly higher incidence of MS.

Mark

[agate]

Nice to hear from you, Mark, and to know that you've been traveling--and getting along without having obstacles put in your way by MS.

This board has quite a few members who have been here for many years. We do hang on--and often hark back to the days when this board flourished as a source of good information from many sources. You were among those who helped to make it a valuable resource for all who were looking for some answers.

We've been hit hard here in the last couple of years, losing Peg, Sally, and Vicky (Frog42). In addition, Jeanie Z and Catdancer have had bad setbacks but everyone hopes that they'll recover in due course. We've been grateful for the assistance of Rose (Earth Mother 2 Angels), well known in Child Neurology, who cheers us on and gives helpful advice in spite of having to deal with very difficult and sad situations in her own life.

[Virginia]

So good to hear from you Mark and to know that you and your lovely wife are still traveling and still helping others.

Thank you for your input re vitamin D3 and Omega 3s. Makes me glad that I have continued to do both, and you were largely responsible for the Omega 3s that I have been taking for the past 19 to 20 years.

We miss your input on this board, but I am so happy that your MS has basically just left you alone for a very long time. I am sure this has allowed you the good life you are leading.

Please continue to check in as often as you feel you can. We are a much smaller group, but in many ways a much closer group. As Agate mentioned we have been hit hard in the past couple of years. I will just add one name to her list JTwin (Joy). We lost her to PML. As you might be guessing she was on Tysabri.

[agate]

Thank you, Virginia! I knew I'd forgotten at least one person but had so much nonsense cluttering my head just now that poor Joy's name dropped out.

She was Electric Joy--also *Joy*--for quite a while here, I think. It's shameful that she slipped my mind because we often exchanged e-mails and were Facebook friends.

[Cherie]

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Here’s the post from XO++ with his update:

http://www.braintalkcommunities.org/...-a-former-BTer

ANN

ANN,
I was thinking that I had not seen Mark (XO) in at least 5 years, maybe more and the link you posted is 7 years old. I hope he is OK.


HWO,
Welcome back! I do remember you. 1.5 T can show gross abnormalities but in difficult to diagnose persons a 3.0 is better. I know. It is frustrating....very!. Please feel free to reach out. I was more than 19 years without a diagnosis then afterwords another 7 years till docs took me seriously enough to treat. I feel your frustration. I am also here to tell you that I am SO much improved from when I first went on meds 19 years ago 26 years into this disease and at well older than traditional retirement age am functioning far better than I did in my 40s or 50s as a result. Welcome home.

[Cherie]

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Hi Hootswithowls, Hi Everybody, ��

Sorry you’re having difficulty hootswithowls. I just looked into this forum for the first time in a number of years and saw your note. Thanks stillstANNding and Virginia for posting my updates from 2012 (I didn’t remember when I last checked in).

With respect to supplements, I would encourage everyone with suspected or diagnosed MS have their Vitamin D levels checked. It is known that MS patients disproportionally have low Vitamin D levels and MS incidence has repeatedly been correlated with regions with low sunshine (although correlation does not prove causation). My levels were low and I have been taking between 2000 and 5000 IUs of D3 per day for many years.

I continue to get from my diet high levels of omega-3 fatty acids (I eat a lot of salmon, and have ground flaxseed with my kefir most mornings). There is some evidence to suggest a modest effect on MS but omega-3s are important to both heart and brain health in any event. Here’s a recent clinical trial with D3 and omega-3s vs placebo which demonstrated improvement in EDSS and metabolic parameters in the treatment group:

High-dose ω-3 Fatty Acid Plus Vitamin D3 Supplementation Affects Clinical Symptoms and Metabolic Status of Patients with Multiple Sclerosis: A Randomized Controlled Clinical Trial.

And here is a systematic review from this year which found that Vitamin D supplementation seems to be most effective in those with lower baseline disability:

Effectiveness of Vitamin D Supplementation in the Management of Multiple Sclerosis: A Systematic Review.

Although I no longer take it myself, I would take alpha lipoic acid (ALA) if I were symptomatic, particularly if I were having issues with leg weakness. Here’s a recent small trial in which ALA had a a modest effect on walking in SPMS:

Effects of lipoic acid on walking performance, gait, and balance in secondary progressive multiple sclerosis.

I’ve had no symptoms of MS since 2002 although my last MRI in 2004 showed new lesions on my spinal cord (at the time my neurologist remarked “but we already knew you had MS”). I only had the 2004 MRI for insurance purposes, not because of symptoms. I haven’t seen a neurologist (other than my wife ) since then. In fact I was surprised a couple of weeks ago when Anthem BCBS mailed me a letter encouraging me to see an MS specialist (first time I have ever had an insurer encourage me to use their insurance).

I have long believed that MS therapies are not more effective because MS is a constellation of symptoms lacking a common cause (this belief is not original to me). Different therapies work for different people … if something doesn’t work, try something else. And even if a therapy is effective, it may not undo damage that is already done. Unfortunately there is no magic bullet for everyone.

Still living on a barrier island on the outskirts of Charleston, SC with my lovely spouse. Still travelling although not quite as often. We travelled about 500,000 air miles in the first 5 years of our marriage … now we’re out of the country about two months out of the year. To escape Charleston’s summer heat and humidity we have been spending a month in a much cooler climate in summer … two years ago in Sweden and Estonia, last year in Sydney, Australia, and this summer in Newfoundland. And we usually spend about a month including Christmas in Europe (we love the Christmas markets there). Last Christmas in Paris, the prior Christmas in Vienna.

We did do a volunteer stint in Myanmar (Burma) (actually my wife did … I accompanied her ). The clinic in which she worked (and in which she was training doctors) brought in everyone from villages surrounding Bagan with neurological complaints to see her. People would spend the night on the ground in order to see her the next day. She saw and treated hundreds of patients ... wonderful experience for both of us. Bagan is amazing … in a fairly small area at one time there were 13,000 Buddhist temples (constructed between the 9th and 13th centuries) … over 3,000 are still standing. We stayed on a beautiful mango plantation (and they gave me an office in the clinic where I could work while my wife saw patients).

Sad to learn of Peg.

All best,
Mark

Mark! Welcome back! I, for one, have missed you. Lots has changed for me since we last communicated. Treatment is working. Depression has been reined in . My energy levels and diet and exercise routines have changed and I am productive again at north of 65 years old. Lots of travel and teaching and committee work and national health involvement. I hope you will check in more frequently.

[xo++]

Hi Agate and Virginia and Cherie,

Yes I remember everyone you mention and am saddened by their passing. In fact I was planning to ask Sally how she was doing with LDN. I know it seemed to help her. I remember Howard was using antivirals. Nick was the original apostle for Vitamin D. Mike aka Grassman for cannabis.

And I remember fondly the passionate discussions and disagreements we had. And cliques and factions. But I remember all of that fondly as well. Of course all of us on all sides were primarily interested in being healthy, and in everyone in our community being healthy as well. It was my first experience with an online community.

Thanks Cherie for your kind words. Glad you are doing so well.

All best,
Mark

[Virginia]

Mark, as I suspicion Howie is either watching a movie or has gone to sleep so I will tell you that he no longer takes antivirals. I think he still believes in them, but has stated that he stopped having any cold sores so he stopped years ago and has had no further symptoms as far as that goes. Some nights he is a late night person but he has been on the quite side today. Being smaller we notice when our regulars do not post for awhile.

Glad you and your wife are able to leave S.C. for a couple of months during the year. The islands down that way are beautiful, but can get definitely hot, just as it does here in N.C.

Best wishes,
Virginia

[Howie]

Gosh Virginia, you've kept a pretty good mental record of my activities. I'm impressed!

I'm still doing well, still have had no exacerbations. I just watched the Outer Limits until I felt sleepy, then went to bed. That's one advantage to watching a show you've seen multiple times, you know how it's going to end, so whenever you get sleepy, you just go to bed.