Rheumatologist Dr. Bob Sun - 6-25-10

Dear everyone -

Well, it's 6 months of shopping time until Christmas! Maybe soon I will actually do some wedding planning and envision a future that a few days ago I didn't know if I would ever envision.

Let me tell you about the new man in my life, Dr. Bob Sun, Rheumatologist. He walked into the room and he looks FRESH out of medical school - but I now see how that is a blessing.....He did a full workup - discovered more joint pain/swelling/problems that I didn't even realize were hurting because the other pain that I have experienced has been far too overpowering. He had a "bad" magic touch - managed to make just about everything hurt. He took a detailed history of my life, particularly medically. He even shared stories about his life, his recent wedding, his friend's wedding where they rented Soldier Field and the entire price tag of everything was $100,000!!!

He was so personable, and that was the best part. He made it a point to full understand how difficult life has been for me these last 2 years and why it is upsetting to be finding myself in the office of a new specialist with a potential new diagnosis forthcoming. He told me honestly that rheumatology is one of the most inexact fields of medicine - essentially, there are nearly 100 diseases that fall under the scope of "rheumatology". Most of them do not have a simple test of "yes", or "positive" or "no" or "negative". They are just tests of different antibodies, different hormones, different markers that point toward or away from particular glands and organs and therefore causes and culprits.

So in order to arrive at the correct diagnosis, the job of the rheumatologist, he says, is to investigate all the available data - that is, my medical history, his clinical examination of me today, all the notes and things from my medical chart, the X-rays that he took today of my hands, my chest, and my shoulders, and the barrage of blood tests that he ran through today and a urine-analysis that I will provide next week, and the he will run the combinations through and find the right diagnosis.

I don't even know all the tests he ran today - there were so many. But I will have results by the end of next week, and he will either call me with a diagnosis or have me come in to provide the diagnosis and discuss treatment.

So no diagnosis yet, but I feel really confident that he/we are doing this the right way...I asked him if he could venture a guess at this point and he was very hesitant. He said, we know that it is definitely an inflammatory autoimmune disease (duh). He said he is fairly sure it isn't lupus. He said he almost certain it isn't gout. That's as much as he would guess....the list of possibilities is too long and he doesn't want to guess until he has everything all in front of him for him to analyze.

I think because he's young he is not only intelligent and easy to talk to, but also really intuitive and concerned with "whole health" - he wanted to know about the effects on my daily life and wellbeing and said that someone should have sent me to him or to a rheumatologist back in September when my hands first caused so much pain and numbness that I wasn't able to use them for nearly a year. He said that was caused by whatever disease I have now - and we could have had treatment and a diagnosis much sooner.

He was very good at explaining how this could have happened as well, because I told him that it is hard for me to imagine how it is possible to have MS, IBS, etc. and then develop another inflammatory autoimmune condition - due in large part to the fact that the MS medication is designed to suppress my immune system - and therefore suppress inflammation. However, bodies adapt, just like viruses, and essentially, the only treatment available for MS is designed to block one inflammatory pathway - the interferon inflammatory pathway. I have diligently been taking the medication to block that pathway.

My body cells, though, have been reprogrammed, unfortunately, sometime whenever I first developed MS, to attack my own body cells (in the case of the MS, the cells that create the myelin which protects the nerves and neurons and damages the neurons and nerve messages). My medication then suppressed that "usual" inflammatory pathway in order to limit the amount of damage done to the neurons through multiple epidsodes of attacks and subsequent scarring. However, my medication blocking this pathway did good things for the MS, but the body being ever adapting, it decided to adapt a new pathway for my immune cells to attack and cause inflammation in other tissues - likely in this case my joints and soft tissues. So the autoimmune condition that existed originally from the M.S. is still there, by all means, it's just being suppressed. And the other inflammatory pathways are redefined and redirected but still reprogrammed to attack my own body cells instead of foreign invaders.

So next week hopefully we will know what new disease I have. The rheumatologist really was so good - he spent a full hour with me then bloodwork took forever because there were so many tubes and then the X-rays, so it was a long morning. The rheumatologist told me that if I haven't heard directly from him by Friday I should call him. He said that a large portion of these diseases have a multitude of available treatments and that he didn't believe that I had a disease that might shorten my lifespan, but he did put a disclaimer on that end of that sentence that he's "pretty sure"......and he knows how important it is for me to be fully functional to walk down an aisle on my wedding day (whenever that may be next year) with all arms and legs in working order.

I really feel like I'm excellent hands - and I think I won't experience the same frustrations I have had with Dr. Hentati, my neurologist, who refuses to discuss things that aren't FDA approved - such as dietary changes, supplements, exercise, alternative options. I think Dr. Sun, the rheumatologist is young enough to know that this isn't the giving up stage - this is the stage where we tackle whatever this is and try to improve the quality of my life.

So now we wait.....and hope that the treatments for whatever I have don't conflict with any of my current million medications. Should be interesting.

Anyway, the main thing is that I really felt like I connected with this Dr. and he really did such a thorough workup that I know that what he comes up with should be in my best interest - I got all those vibes from him. So I think that's a good thing.

Unfortunately as I am tapering down on the steroids, and probably also because he manipulated every joint in my body, I am in a lot of pain tonight.....

c'est la vie....