This Is MS Multiple Sclerosis Knowledge & Support Community

Since we're posting pictures (I guess that's allowed here?) this was me in December.. probably at my worst too. That's my hat I wear when I get cold, which is quite often.



I had facial spasms at the time, and was feeling pretty icky. This was pre-diagnosis, and yes my webcam is horrible at taking pictures ;)

I'm Irish, but brown hair and no freckles. Some moles. Don't burn easily but fair.

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Dom....you handsome devil! Surrounded by a bevy of beauties, bien sur! But that red beard was a bit much. Glad you are more close shaven.
And Nenu, you have a lovely face and kind eyes. You look just like my husband's youngest sister...

Terry, interesting research on hormones...CALLING SHARON!!!!
"There is some indication that a high level of pheomelanin goes hand in hand with more abundant hormones and what are known as neuropeptides, including adrenaline and dopamine. Adrenaline is needed for high-energy flight or flight responses and redheads may have elevated levels of these."

We just had my husband's serum hormone levels checked, because a saliva test implicated high adrenal response, high FSH and LH and low testosterone. Could it be that flaming hair is from high firing adrenals?

AC

Hi AC
about 8 years ago when I was in the thick of my "I know I can find the cure for MS on Medline if I just search hard enough" phase, I saw ann article that claimed women and men with MS had low oestrogen and testosterone respectively.

AC,

Have you tried to get some Andro-Gel for your husband? Now I may make myself foolish here (I know, not a big stretch), but there was an article I read not too long ago about a group of PPMS'ers that were using Andro-gel. I suppose I ought to state what that stuff is first; it's a gel that gets testerone "in you" transdermally. At any rate, there wasn't much that it did in terms of stopping their progression, but they said that they felt worse after they got off of it. Probably a QOL type of feeling worse.

Now how much more vague could I be , but I have often thought about getting my testosterone level checked and if it is low, I'm getting some Andro-Gel to try and bring it back up. I hadn't thought of that article until just today and two things reminded me about it. The first was all the talk about MS people having low levels that I have noticed lately, plus I know they have it at my pharmacy as I was getting an Rx filled today and saw the "packs" of it. I don't know, just a thought.

Thanks, Lew.
We FINALLY found a doc my husband likes. Young guy, studied with Andrew Weill, very holistic and really smart. He's getting my husband's serum hormone and thyroid levels checked, since Jeff had really weird results on the saliva hormone test. This doc is looking at the whole picture (finally!) not just MRI results or lumbar puncture. He thinks everyone's MS is caused by something unique, and it helps to know what the total health picture is in order to treat patients. He uses "bioidentical" hormones, and we'll get them at a compounding pharmacy. Not sure if it would be androgel.

I'd suggest getting these tests done, Lew. Jeff was "functioning" just fine, but because of his fatigue, I wanted to look into these tests. I'd read so much here and online about hormonal levels and MS. I think it helps to find a doc that gets the "big picture." I was so sick of Jeff's neuro saying "your liver enzymes/petechiae/weird hormone levels/etc. are NOT related to your MS. C'mon!!!! It's all the same interconnected body! Of course it's related to his MS.

sorry, I'm rambling. Too much coffee
back to red hair -
AC

Thanks CL Surprised that my eyes showed kindness, considering I wanted to throttle someone lol.

Wife has red-brown hair and some blotches in her face, these appeared last five years so probably are MS connected!

Cheerleader as I read your husband case is exactly the same with wife's case, she has had inclination to hypothyrodisim (corrected with Lauricidin - that your husband can't tolerate - healthy diet and zinc), high SGOT (liver enzyme) and probably high FSH/LH (we will check them her third day of period).
She has almost same regimen with your husband but takes LDN instead of copaxone, LDN by boosting endorphin levels probably helps stabilize hormones.
She tries to get pregnant but as you already know FSH/LH and testosterone/estrogen levels play a huge role on fertility thus I decided to check them all with her gynaecologist.
We'll see...

Talking about blotches on the face... I got one (small, very light brown) just under my right eye. Barely noticeable, but I sure noticed it. This appeared after the steroids I went through, or I at least noticed this after the steroids. I just figured it was an age spot (but I'm not that old!).

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I thought it was illegal to ship noxious gases through the mail!?!?!? (Gratuitous OSU vs. UM plug)

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Hmm, I'm starting to get that, " this all seems to tie together", feeling, but I'm not sure I can put it into words. Take the red hair: mine seems to be " secretly red", but I'm half Italian and half British. Because Britain has been invaded, enslaved, raped and pillaged many times over the past few thousand years we're a mongrel breed, with more than a dash of Viking blood. The so called "Viking gene" has been implicated in MS many times. Their strongholds were in the north of England, Ireland and Scotland and of course Scotland has one of the highest rates of MS in the world and, seemingly at least, a high number of redheads. Their reach was surprisingly long, with groups of Nordic looking people even being found in the Lebanon… I don't think anyone has done a study to see if there is a correlation between these groups and MS clusters.
The link between red hair and stress hormones is also interesting: the famous temper sounds like elevated stress to me, and the fight or flight response involves cortisol, which raises blood sugar and blood pressure. Stress itself is frequently cited as a factor in MS.
The fact that the neuropeptides you mention, Terry, are vasoactive ties in nicely with all the "MS as a vascular disease" speculation which often crops up.

Nenu, I second what cheerleader said about your picture. Robbie has a continuing thread with lots of pictures on it, which I think would be nice to have as a sticky to act as our gallery. That picture I posted was taken almost exactly 10 years ago, and the large gingery caterpillar under my nose turned into a scraggy moth and flew away a long ago. What you can't see is the huge army of leprechauns building scaffolding around my legs to hold me up.

Bob, we all know you have film star looks.

What a pity the film in question was E.T.

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I'm not even close to being retired, and am only an armchair amateur neurology geek, Bob...but there are many interesting facts about the MCR1 (melanocortin receptor 1) gene. I just don't think we can discount it with the Viking label ...it has many ties to the MS population.

It shows up throughout Scotland, Ireland, and even northern India, Algeria and Pakistan...not just european "industrialized" nations. This gene is linked to northern latitudes, because it allows vitamin D production to occur in reduced sunlight. sound familiar?

This gene produces more pheomelanin chemicals, and is responsible for elevated levels of adrenaline and dopamine. It is involved in vitamin D production. It is responsible for a heightened response to pain, especially thermally induced pain. It is related to heat sensitivity. And yes, in some folks it shows up as red hair.

Japan is an industrialized society with a low incidence of MS. And there aren't alot of redheads, either.

Guess I'm just a chicken
AC