Saturday, December 12, 2009

Doctors, Doctors and More Doctors...

As most of my readers know, I have been dealing with some puzzling health issues as of late - primarily random rash that tends to show itself about every 2 weeks. I have also been extremely fatigued - beyond anything I have ever experienced.

One month ago, when I saw the rheumatologist for the first time, I had a very elevated antibody count in my blood, typically associated with auto immune disorders. My most recent blood work as of 2 weeks ago showed the antibody count to be the same it was a month ago - yet all additional screenings performed were negative at this time for the associated autoimmune issues. My counts remain 5x the normal level, concerning to all the medical professionals treating me.

Suffice to say, this is a bit frustrating - on a positive note, several serious things were ruled out for now, which is a good thing. However, we still don't know what it is. The rash is back again this week, and I am as uncomfortable as I have been in awhile. My rheumatologist is also a bit surprised with the results of the tests - while he is happy several things have been ruled out, he is still very concerned that I show high antibody counts in my blood.

The next step was taken on Friday morning, when I returned to my dermatologist for an additional skin biopsy. When the first biopsy was taken, we were not testing for autoimmune issues. This skin biopsy is a definitive lupus test - in talking with my dermatologist, basically someone will know when within 30 seconds of looking under a microscope whether I have lupus or not. I actually had 2 biopsies taken - one in an area affected by the rash, and one in an area not affected by the rash. Key to the diagnosis process is that the area is a non sun exposed area - sun exposure can impact the make up of your skin. The focus will be on the non affected area - if that sample is consistent with the patterns presented in a lupus diagnosis, that will be very, very telling. The samples will be evaluated by the Mayo Clinic, which is just absolutely amazing to me - apparently, they have an amazing set up for stuff like this and my slides will be evaluated under a $60k microscope. And I know this because my dermatologist is in a one year research fellowship with heavy lab focus. How lucky is that???

Although my blood work does not seem to indicate lupus, autoimmune issues often present in their own unique circumstances - my experiences are very typical of many patients with autoimmune issues. Moreover, I am very blessed to be working with doctors committed to my care - my dermatologist had a question about the sample she was taking and she walked right out of the office and called my rheumatologist while I was there (before she started poking me with needles and cutting me!). I have her cell phone number and can call her anytime. How lucky is that??

So I hope to know the results by the end of next week...if not, I will know the week after Christmas. In the meantime, they are treating me for general connective tissue disorder. Basically, my body is attacking the good guys - for some unknown reason. Your skin is what holds you together - connective tissue - and as far as my doctors can tell, something went haywire and what holds my body together is at war with my own immune system. For now, I have started taking a drug called Plaquenil, which is used to treat malaria, lupus and rheumatoid arthritis. I was very hesitant to start this because they do not know what they are trying to treat - I was also hesitant because this is something that is a long term thing, meaning it will be somewhere in the neighborhood of 3 months before I see any results. The reason I agreed to take it was because he said if it was autoimmune (and in his mind, I have some sort of autoimmune issue, he just doesn't know what yet!) that the medication will help with the fatigue. So I gave in gracefully...sort of. One of the very less frequent side effects of the drug is retinal issues (1 in 200k peeps affected) but I am very freaky about my eyes and I told him that - I have been close to someone who does not have their vision and I am in no way willing to risk my eyesight. Accordingly, at the recommendation of both the rheum and derm, I will now add an opthamologist to the long list of my doctors. My dermatologist is working on finding one in my insurance group. Did I tell you how much this woman rocks? She even waived my co-pay on Friday morning ($40 a pop every time I see someone and we are now approaching about 15 visits in all of this)...and her bedside manner is just awesome. Dr. Mary Jo Kerns....Dermatologists of Greater Columbus for those in Cbus if you ever need it.

At this point...I just wait. The biopsy spots are very sore...a little different from last time - the ones from last time had stitches, these dont, and these hurt more!!! Go figure. And usually I can ignore that rash, but it has come back in triple whammy format in three spots and I am far more uncomfortable than I have been in a long time. Past history shows the stuff clears up in about a week, so I am hoping history continues to repeat itself. :)

I will keep you posted as I know more.


Becky said...

I am so sorry to hear all that you are going through. Glad that you feel so good about the doctors that are on your team. That is definitely a good point in such a challenging situation. Do hope an answer and action for that can happen soon. Thinking and praying for you.

Mimi and CC Cabana said...

That must be so frustrating, to keep getting the rash and not know why. I understand the worry about starting a medication and having to take it for months before knowing if it even works. But it sounds like you have a lot of confidence in the doctors you are seeing, and that must make a huge difference. You can't get much better than the Mayo Clinic for the lab work, can you?!

After many years of not knowing what was wrong with one of my daughters, we finally got the correct diagnosis and medication this past summer. I worried that she'd be upset by what she was diagnosed with--but it just came as a huge relief to her, to finally KNOW. After knowing came finding the right treatment, which was a process as well. But now she's doing fantastically--it's like night and day.

So I hope they can figure it out soon so you can be on the right road toward recovery!

The Tuckers said...

Partially good news that they have ruled some major things out... frustrating as all get up that they are still working to find out what is going on. In the meantime, it appears as though you are getting the best care there! Hang in there and we are thinking about you... sending all positive thoughts your way!

The Monroes said...

praying for answers and solutions!

Ally, Teddy and Kira said...

I know I don't comment much, well, ever but I feel for you. I know about the extreme fatigue and if you have it, the joint and muscle pain and even the icky feeling stomach. Lupus is one of my possible diagnoses as well and I plan on getting tested as soon as I get insurance next month. Hopefully they figure it out for you soon and the meds work for you! If you want to talk about it, feel free to send me a message. You're in my thoughts!