I just had my appointment with Dr. Kay to discuss the results of the spinal tap I had last month. It is official, I have proteins that signify MS in my CSF. They found nothing else "abnormal" about my CSF or about my blood. Dr. Kay did an exam on my legs and thought they were still a little bit strange, because my right food had a very hard time feeling the vibrations from the tuning fork. Also, my right leg is much more flexible, while my left leg is very stiff. Hmm...
He said that I am now "laboratory diagnosed probable MS" and "clinically diagnosed possible MS". I am laboratory diagnosed probable MS because I have shown signs of MS on both an MRI and a spinal tap. I am clinically diagnosed possible MS because I have had only one attack. When or if I have another attack on a different part of my body, I will be upgraded to clinically diagnosed probable MS. This concerns me because my first week of college I "saw double" which I just ignored at the time, but now I know that is one of the ways that MS can flare up. At the time I just chalked it up to the stress of starting college and then moved on. It went away and I forgot about it till now.
He said that in 5 years, I have a 20-30% chance of having all traces of MS be gone from either the MRI or from my CSF or both. I have an equal chance of still having traces of MS, but no "flare ups". I have a great chance that I will have recurring attacks.
He said that I should come in for a follow up visit in 6 months, just to monitor my progress because when I leave Hong Kong he wants to be able to write as complete a report of my case as possible, so that the doctors in the US have all of the information they need. He also said that if the MS gets worse for some reason there are a coupe of options. If I have an extreme flare up, they can give me steroids. There is also something called "Interferon" that is used for people that have 2 attacks per year. It is effective but inconvenient because you have to do self-injections every other day.
Dr. Kay said that he recommends that I stay active but not do too strenuous of exercise like running marathons. To me this is a very "Chinese" view point. They don't seem to like to exert themselves much. Not that I plan on any marathons in the future, but I refuse to limit myself if I don't want to. I reserve the right to do whatever I want! I hate limiting myself, even in theory. He also said that there is no "special diet" that I should follow, just try to eat a balanced diet, which I do anyway.
Dr. Kay said that I am not alone, because he has had a quite a few new MS cases in the past few months. (When he says "quite a few", he means 5, because MS is a rare disease especially among Chinese people.) Two of the cases were Chinese people and three were white. He said that MS is 100 times more prevalent amongst people of Northern European descent than amongst Chinese people. Multiple Sclerosis is thought to originate from the Viking population. Hmm...I guess my Swedish/English heritage isn't doing me any favors here! Also, he said MS is correlated to the latitude at which you lived your first 15 years. For instance, people who live at about a 40 degree latitude (New York and London) are much more likely to get MS than someone who lives in, say, Panama or Indonesia or somewhere closer to the Equator. Also, if someone is Chinese, a population with very low rates of MS, and they are much more likely to get MS if they spend their first 15 years in New York rather than Hong Kong. Very interesting...I spent my first 15 years in San Diego, which should be ok, but I still have MS so these "interesting facts" don't do me much good!
In the end, I was not affected much by the visit with the doctor. I feel good, I am living my life and I have a lot to look forward to. I am doing a ton of physical stuff in the hopes that one day if I am mobility-impaired, I can look back and feel satisfied that I have had many adventures and tried lots of different things. Rock climbing, skiing, hiking, windsurfing...I will remember my fun and I hope that I will take some comfort in that.
This day is actually a wonderful day...I will explain in my next post. I have to leave now...
2 comments:
Meagan, I just got back into reading your blog. I have heard so many different views of MS that I don't know what to think....I'm sure you must feel the same way times 100. Hopefully, the presence of the enzymes will stay minimal and you will not have many problems. I'm crossing my fingers. Enjoy Life. Viva la vida. Love, Marti. P.S. Wish we could have come to Matt's party. Gosh, it looked fun.
Meagan, very, very sorry to hear this. I have another friend who was just diagnosed with MS in January. Are you seeing the right physicians, have the right insurance, have the right support network?
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