Health Update

Multiple Slerosis

After a year of waiting to get an appointment to see an MS specialist at the Partners MS Center of the Brigham and Women's Hospital of Harvard University, I finally went in to see my new MS doctor...Dr. Margolin. I was extremely nervous for the appointment, mostly because I have been living my life feeling perfectly healthy for the past 2 years since the diagnosis. I didn't want to ruin my nice life by hearing bad news! I managed to convince my wonderful boyfriend to leave work early to come to the appointment with me. It meant a lot to me that he came with me, because he seems to be a workaholic and it is really hard to get him to skip work. I felt that it was important for him to go with me though, so that he could hear first hand everything that the doctor said, because my health is going to affect his future if we are married and living together. The waiting room was a big relief. Everyone in there looked fine to me! Not one single wheelchair or blind person! Of course, this may have been chance, but it was good for my psyche.

Dr. Margolin was very nice, but also no-nonsense. He was honest with me, which is important. He seemed much less optamistic about my MS than the doctor in Hong Kong did. He said that my MRI shows classic MS and he doesn't have much hope that it is benign. The "black hole" in my brain that you can see in the photo above is also due to MS...there is a subtype that causes it. THis is a relief because before I did not know this. He advocates aggressive drug therapy, so it looks like I will be on medication in the Fall. Unfortunately, most of the medications are administered by injection, so I will have to inject myself either daily or weekly. That does NOT sound like fun to me, but I guess you can get used to anything. It could be worse! He also told me (ratherly excitedly) about a drug called Tysabri that reduces flare up frequency by 60%. But, in the clinical trials, one out of 1000 patients developed something fatal, I forget what. Anyway, they died. So, this scared me and I was appalled that he would suggest this to a healthy enough 26 year old person. But, I think he only meant to let me know about my future options. Still, it was scary. The other options were avonex, copaxone, and rebif, but these only reduce flare ups by 30%. The great news for me is that he sees no reason why I should not go to India and also no reason why I should not be able to have and raise children.

I feel confident that I have done what I need to do to obtain the best medical care possible. Dr. Margolin and the Partners MS Center focus solely on MS and they are extremely knowledgable. I liked my doctor in Hong Kong, but MS is rare over there and he didn't have much experience with it.

Osteoporosis

This is a shocker. I volunteered to be a "control" in a research study at Massachusetts General Hospital. Part of the study was a DEXA bone scan that shows your bone mineral density. This is a test I never would have had if I was not in the study, it is expensive and no one would ever think that a 26 year old would need one. Anyway, the bone scan showed that my wrist is normal, my hip has osteopenia and my spine has osteoporosis. (The research study physician told me the spine had osteoporosis, but the neuroendocrinologist I saw later told me it was only on the borderline with osteopenia.) This was scary finding! I started crying, of course, and my poor friend Rachel happened to call and then I started sobbing. It was the straw that broke the camel's back: how can I, a healthy 26 year old yogini, have all of these life threatening, horible diseases? It is just not fair. But, to quote Grandma Janet, "No one deserves anything in this world." The older I get, the more I think this is true. Some people are lucky and have good health and/or lots of money, other people don't. Most of the time, it has nothing to do with your worth as a person.

Luckily, the physician of the research study took pity on me and called in a favor from her colleague at MGH who is a neuroendocrinologist that specializes in bone, Dr. Nachtigall. My friend Rachel's stepdad also called around for me because he has connections to the medical community in Boston, so I had lots of good people helping, I was very lucky. I ended up going to Dr. Nachtigall, and she was extremely nice and she sort of reminded me of House. Not in the way that House is rude, but in the way that he is like a detective trying to figure out what is wrong with a patient. She looked me up and down and asked me a bunch of questions that were seemingly unrelated. At one point she looked at me searchingly for a long time and then said, "Well, you seem to have feminine features." I was like, "Ok, good to know!" The bottom line is that I have low estrogen and that has been causing bone loss. She gave me a prescription for the pill to normalize the estrogen until we figure out what the cause for the low estrogen is. She was stumped as to the cause, for now. My initial bloodwork showed none of the obvious culprits, like other hormonal imbalances, and the low estrogen has nothing to do with my weight. Based on bioelectrical impedence, my body fat percentage is right in the middle of the "normal" range and so is my BMI. So, it is definitely not that. She said that sometime they can't figure it out and even then it is not that big of a deal, because I can just artificially control my hormone levels. She also said that I should have no problem having a baby. So, this is great news. Dr Nachtigall also said that there is no reason why I should not go to India this summer. She said my chance for fracture is as good here as it is there, and she can't see me again until August anyway.

The bottom line is that that I am relieved that I volunteered to be in this research study so that I know about this problem. Now I can attempt to fix it, while I still can! In September I will have another MRI so she can get a look at my pituitary and some blood tests to examine my vitamin D and Calcium levels. I was told not to ride camels or horses, which suits me fine because after my last experience with camels in Rajasthan, I am fine with skipping it this time. Camels are really, really tall and uncomfortable. Plus, when they stand up or sit down while you are on their back, it is scary.

So, all of these health issues have been at the forefront of my mind these past two weeks and it has been very emotional. I have tried to force Matt to think about how this will affect his future, and I wanted him to know that he has a choice and that I am capable of surviving on my own. (Not that I want to, but I could do it, I have a large and loving family. I would buy a condo near the ocean in San Diego and get a job and hang out with my mom. It really would be ok.) But Matt is the loyal person that he always is, plus, we are in love. I think our lives and personalities are so intertwined that we are basically one being at this point. Plus, I am healthy now, and have to keep hope alive. No one should live their life based on "what if". On the other hand, my health will have a huge impact on Matt's future.