Sometimes.. your body gives you clues

And it's up to you to decipher them. Sorry I haven't updated in several weeks, as it turns out I relapsed. The doctor said the lesion in my brain had been active for at least six weeks and given my last post, that makes sense!

It all started when I began getting these strange headaches. They started out to be bearable, I would pop some aspirin and then lay down and in a few hours they'd be gone. They started with this slight burning right behind my right eye. I should have known, with the burning, that it was something more. For me, burning always means MS. Then they began to get worse. The burning would spread into my sinuses and the back of my throat. They would bring me to my knees, make me physical sick, I'd sneeze uncontrollably, my right eye would water and I couldn't deal with the symptoms, it was too much.

I took a trip to urgent care, since I don't have a primary in the area yet, and the doctor said it sounds like cluster headaches but since you have MS, we want you to get checked out by a neurologist as soon as possible. That doctor saved my life. I wish I could remember her name because I would send her flowers, a card or a fruit basket, or heck, all three! She made all the calls and she got me in to see a doctor at the Providence Multiple Sclerosis Center. Amazing!

The meeting with the PA was super informative and based on the pain, they wanted to get me in to an MRI right away. I went it for the MRI and as it turns out, I have a super large lesion on my brain that's been active for about six weeks. They sent me to the infusion center the next day and I started solumedrol.

This time around they did not put me on prednisone to taper and it was hell. The first week after I was so tired, sick and miserable all I did was sleep. Finally a few days later the giant boulder had been lifted off of my head and I was able to function. I could stand up without falling over, I could think, I could drive, life was getting back to normal.

I was also told I'm eligible for a clinical trial that will pay for everything, which would be great since my insurance company considers this a pre-existing condition!

I've also started to get a handle on my PCOs. This time I did a little research before going to a doctor and handpicked the one I wanted to see. Dr. Amato was actually recommended on a PCOs forum I troll around a bit. She turned out to be super nice, and put me at ease. She passed my test but only managed to tell me the stuff I already knew. Her solution was also just to give me a “band-aid” treatment of progesterone and birth control, all before getting the results back from my tests. I didn't have the courage this time to ask to have my cortisol levels checked but I have an appointment in a month so I'll bring it up then. Yup, this one didn't scare me away so I'll actually be going back!

And that's all the updating I have to offer. Although, I should send out a public thank you to Steven who drove three hours each way, twice, to take care of me when I was really bad. He made sure I didn't fall and did a wonderful job making sure I was okay. What an amazing man. After five years in a terrible, abusive, demeaning relationship- Steven is breathe of fresh air!

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

A Year Later...

It's a year later after my last relapse and it's a time for reflection. For those of you who have been wondering where I've been, I've been swept up in work, school and a bunch of family situations, so I'm apologizing now for not updating nearly enough.

I met with Taft, for my six month visit. Of course, given the release of the latest pill, Gilenya, for MS, I was full of questions. He said there are just too many long term side effects (heart and respiratory), that he wouldn't be putting me on it and that I could never take it if I wanted to get pregnant. His word is enough for me and I'm satisfied with his explanation. What does this mean? It means I go back to doing my rebif injections twice a week and just deal with the side effects and site reactions.

I also asked him about the latest research and findings involving the narrowing of neck veins and it's relation to MS. Frankly, there hasn't been enough research to know exactly *what* this means and secondly, there have been a multitude of complications and even death, eep! But, he said I shouldn't discount it yet but also not to take the first road trip to Buffalo to sign up for the treatment.

I have to say, I am a bit sad though. As of Nov. 1st he is leaving to take a teaching position up at St. Joe's. While this is a great opportunity for him, I feel a bit sad because it's a shame to be losing him. He is a rare breed in the medical field, you can tell he's a person that really cares about his patients and takes the time to learn all he can in order to answer our questions and provide us with the most up-to-date and accurate information. I'll personally miss him because he has a great bedside manner, is charming and really makes me feel at ease, so much so that I can be incredibly honest with him.

How have I been? I've been doing just fine. I, for the most part, have completely bounced back from my last relapse and don't need a walking device for assistance, well other than for times when I'm walking a lot. I've been so incredibly busy with school it's almost consumed all of my free time outside of work but I've only got 16 credits to go, so it's all worth it. Besides that, I've decided to go on to grad school in order to get my J.D. and become a disability lawyer and advocate, especially for patients with MS and those who have been discriminated against by their employer (despite protection from the FMLA Act).

So, here's my question to you all, how are YOU doing?