[Stellatum]

Hi, everyone. I've been absent from this forum--just been really busy. I'm up and down, but on the whole, I think, better than I was four years ago, when I first started having symptoms. I'm on nothing but Imuran. For those who don't know me, I'm seronegative, diagnosed by my third SFEMG (first two were inconclusive). Mestinon doesn't help me, and neither, I've concluded, does IVIg. Heat doesn't bother me. I have almost no eye or eyelid symptoms. As you can imagine, I sometimes doubt my diagnosis.

This is the third spring in a row that I've improved as soon as I started sitting out in the sun. Of course I take vitamin D year-round, but it doesn't seem to make a difference. My improvement could easily be a coincidence, but I think I'll ask my neuro if he thinks it makes sense to try light treatments in the fall and winter. Do I need a medical setting, or will a tanning booth do? I think I'm supposed to avoid sun while on Imuran, but most treatments for MG are risky (including Imuran).

Any thoughts?

Abby

[AnnieB3]

Hi, Abby. I'm glad you've been feeling pretty good.

Why don't you put a coat on and sit in the sun in the fall and winter? I try to do that, even if it's only inside in front of a window.

If it were me, I wouldn't want to risk the immunosuppressant/sun cancer possibilities. And light therapy has the same risk, whether it's a tanning booth or one in a doctor's office. In fact, it might have more risks due to the fact that it's not a "natural" light source.

Have you tried upping your D dose or trying a different supplement?

I feel better in the sun, too, but, for me, it's probably only a mental improvement after being cooped up. Although I have to say that the more "energetic" areas on the planet (look up ley lines), as the one in southern FL, make my mind feel amazing.

Annie

[Stellatum]

Hi, Annie. Thanks. I know it's a cancer risk, and I need to balance that risk against the risk of not trying a potentially helpful treatment (those risks are very real to me, too!). But that makes sense about trying a different kind or higher dose of vitamin D. Maybe I could accomplish the same thing more safely.

I once read that here in the upper latitudes (I live around 43 degrees north), the sun doesn't get high enough in the sky in the winter to do much good. I don't know for sure if this is true, but it makes sense, because when the sun is lower in the sky, the UV light has to go through more atmosphere before it hits you (because it's coming in slanty). Maybe a lot of the UV is filtered out. I suppose it's why you're most likely to burn in the middle of the day in the summer than in the evening. So I don't have much confidence in the winter sun.

I'm going to look into a different vitamin D supplement, and talk to my neuro about light treatments.

Abby

[AnnieB3]

Well, considering our ozone and how intense the sun is, I think you might get a sunburn in the winter anyway.

All of the UVs make it through, even at our higher latitude.

If you don't know why the sun is making you feel better, or if it is even making MG better, should you risk more problems by treating it? That's only something you and your doc can answer.

What do your kids say about it? Do they have a vote in Mom risking cancer? I know, that's blunt, but kids are funny when it comes to their parents and wanting them around as long as possible!

Annie

[Stellatum]

I'm going to try a much bigger dose of vitamin D, for starters.

As for the risks, I was thinking of trying a different treatment (let's call it Treatment X). Treatment X is known to carry some serious side-effects and risks: it causes extreme fatigue, muscle weakness to the point of not being able to walk at times, and vision troubles (sometimes severe), and it carries a risk of death. I think these side-effects are pretty terrible, even though Treatment X has certain benefits (like protecting me from skin cancer). Oh, another thing about Treatment X: it has no effect on MG symptoms. Lousy deal, huh. I would like to avoid Treatment X if I can.

Treatment X, as you may have guessed, isn't really a treatment at all: it's actually the decision not to treat the MG in any way that could involve a risk. Treating MG is risky. But not treating MG is also risky. It's not possible to avoid risks. Our job is to weigh the risks against each other. If I reject light treatments, it won't be because they involve a risk of cancer. It will be because I determine that the cancer risk is too high to justify the benefits.

I want to be alive for my kids. I also want to be healthy enough to take care of them. So the question is not whether light treatments are risky (I know they are). The question is whether they give me a worse risk-to-benefit ratio than not having light treatments. And that's exactly what I'm still trying to figure out.

Hope this makes some sense for you.

Abby

[suev]

Makes total sense to me! Each and every one of us should weigh the risks and rewards of treatment options. What's right for me may not be right for another.

What galls me is when one's option to decide for one's self is either taken away from them or never given to them in the first place!

[AnnieB3]

Abby, You certainly don't need to defend any action you decide to take.

Here's some additional information.

http://www.cnn.com/2014/05/29/health...ml?hpt=hp_bn13

Also, the newest information on unnatural, manmade electromagnetic fields causing cancer is pretty stunning. For example, one woman had been putting her cell phone in her bra and that is the exact place where she got breast cancer.

Our bodies, the sun, and other "natural" objects have their own EMF. There are some people who tend to fry manmade EMFs, like a watch.

If you take a compass and hold it in the same position, you can see how "magnetized" different objects (i.e., lamps, silverware, etc.) are by bringing it closer to them. There is a LOT of science on how damaging manmade EMFs can be.

Also, if you wear underwire bras, that can act like an antenna and accentuate any EMF signal, heightening the potential for cell damage. Any metal can do that.

As usual, just an FYI.

Annie