Seeking a doctor who cares enough to listen.

I've been thinking about my appointment towards the end of the month and I'm beginning to have some reservations. I hope this will finally be the one that I can count on to treat the symptoms and not the appearance. So many times in the past I've had doctors who just shrug me off as being overweight and only offer the advice “if you lose weight, you'll have normal periods.” While that my be in part true, there are much more sinister symptoms at work.

I have to know “why.” I will not simply just accept this from a doctor who supposedly specializes in PCOs. I honestly, wholeheartedly believe there is something much more to the puzzle that is my body than a simple “lose weight, feel great,” explanation.

I know there is. There has to be. I spent several months busting my ass on a low calorie/low fat diet only to lose four pounds (in the past, not recently- lol). I've done the whole weight watchers bit. I've even considered surgery (despite my MS). I know there is a missing link in the puzzle. Why?

Because the only time I've had a period in the last four or so years is when I've been on steroids. I'm not sure if it's the solumedrol (IV) or the prednisone that is responsible, but something is. Each time I've been on steroids I have one cycle and then as soon as I'm off them, I don't have anymore. There has to be something there. Some sort of explanation hidden in the recesses of my adrenal or pituitary glands. Something isn't working right and the steroids only help to kick it into gear.

There has to be another connection. Has there been a study done on the number of women who have MS that also have PCOs? Three quarters of the 400,000 people who have MS are women. According to womenshealth.gov, “between 1 in 10 and 1 in 20 women of childbearing age has PCOS. As many as 5 million women in the United States may be affected.” Of the women who have MS there has to be women out there that also have PCOs.

Studies have shown that some women who have PCOs are deficient in a hormone called estrogen. This same hormone has been shown to, if given at a steady flow (especially to pregnant MSers) actually help women with MS (some researchers state that the best treatment for women with MS is pregnancy). There's also the connection between women with PCOs taking corticosteroids in order to lower their androgen (male hormone) levels. This is the hormone, when at a higher level in women, results in a lack of menstruation, weight gain, acne and hirsutism (excessive facial hair).

So would an effective treatment be something like, estrogen and prednisone, as well as my rebif? If it doesn't work, what does it hurt? If it does work, maybe some doctor out there will get a research paper on PCOs and MS published. Who knows? The bottom line is that all I want, right now, is a doctor who will actually listen to me. I don't make excuses for my weight, I know it has a lot to do with poor diet and lack of exercise but I also know there are other factors at play. Will this new doctor finally be the one to listen? Will she order the proper tests? Will she do an MRI of my adrenal and pituitary gland? I'm not sure, but I'll keep hoping.

-Desiree

I've been terrible!

I am so incredibly sorry to those who have been following my journey via my blog. I've been so deeply devoted to school, searching for a job and living life that my blogging has been put on the back burner. So here we go with updates.
I finished up the tapering of the prednisone weeks ago but I'm still getting the acne side effect, which I know will be the case for a few more weeks to come. There's been no sign of my menstrual cycle since my last period back in January. This is how I know that there's a connection between prednisone (steroids) and my lack of period and my other symptoms (hirsutism, weight gain, etc.). I've also managed to gain back the weight I lost on prednisone as well as gained back the inches I lost as well. How depressing. If only they would allow me to take one pill of prednisone a day, this way I could not only have a period like I'm supposed to but lose weight as well. I also have more energy when I'm on the prednisone. I'm not gonna lie, I'm a hyperactive prednisone girl. Some would say it's annoying but when it's compared to the MS fatigue, I like that version of myself better.
I've recovered about 80% of my vision, which means my eyesight is only slightly dimmer than it used to be. As I've told people before, it's as if someone has hit the dimmer switch in my vision. I'm back to driving, which I'm thankful for because now I can hit the streets and go on job interviews.
I've decided to finally consider going on a low-carb diet. There's all this research out there that suggests that there is a link between PCO's and insulin resistance. I'm not sure how acurate it is, but it seems to be the only thing that works for them. I've also considered taking some dance classes in an attempt to get some exercise that will help tone and strengthen muscles which will be handy during an MS flare up.
That's all I've got to report, take care of yourselves!

My face is a volcano.

Or at least it looks that way. No, volcano is the wrong word, more like moon-faced. The small steroid pimples have begun to pop up all over, mostly in noticeable areas like above my lip (ugh) and around the corner creases of my mouth. I just spent a futile ten minutes scrubbing my face in a feeble attempt at trying to control my acne with a face wash. There's not much you can do when it's literally your body trying to rid itself of the toxins created by the medication. My face is a poster campaign for rejection.
I'm trying to decide, at the moment, what's worse. The acne or the hirsutism (facial hair) sweeping across my chin. I bet my body is loving feeding off the steroids so it can start new cultivations of hair colonies in abnormal places, like perhaps a patch right at the base of my spine or the fatty hump curving between my shoulder blades. It all has a sense of poetry to it, doesn't it? I should just be smart about it and just let it grow into a beard instead of spending the time to sit and pluck each hair. Then I'll fasten down my breasts and wear flannel. Hey, I bet it could really fly here. No need to even take testosterone, I make enough of it on my own.