My first visit with my PT, Denny, went well. He too thought AS was a very real possibility so we started doing core exercises to keep myself as straight and strong as possible in the event that I was fusing. I saw him twice a week and did my exercises at home like a good patient. My husband had also bought a rowing machine and since it was supposed to be low impact, I started rowing. For awhile things were going great. Then I hit a wall. During a particularly tough row I started having a huge amount of pain. I toughed it out, which was probably stupid, and after that I was in hell for quite awhile. Denny stopped pretty much all exercise and started working to get my SI joints moving again by using the u/s machine, manipulation, ice, and estim. The pool became my friend. Denny had me do little movements in the pool or just hang out in there with a noodle. The skin near my pelvis felt as if it were severely bruised--still does. Clothes hurt. Life hasn't been fun.
After being on Naproxen for almost two weeks I started getting ulcer-like symptoms, so I was switched to Celebrex, which made me even sicker. Despite being in pain I stopped the NSAID's. Dr. Andrews office had told me to take Prilosec with the NSAID's but I was worried that it would only mask the symptoms and I would do further damage without knowing it. Instead I relied on my half of a Percocet at night when my symptoms were at their worst. I counted down the days until I could see the rheumatologist so I could hopefully get some answers and maybe get started on a different pain relief regime.
That day of answers came. I went into Dr. Balentine's office with an air of fear, hope, and nervousness. I had heard great things about him and was looking forward to meeting him. Instead I saw his PA. I answered all her questions, she checked me over, agreed that more NSAID's could do more harm, and then he came in. Before my visit, Dr. Andrews had ordered a bunch of blood tests that he knew Dr. Balentine would need. One of those was the HLA-B27 marker test. This is a gene that is associated with AS. Now, just because you have it does not mean you will get AS, and just because you don't have it does not mean you do not have AS. Mine was negative. Dr. B looked over my results, was told that my WBC count was low, as were my Lymphocytes, that I was HLA negative, and other things that I didn't understand. He said he didn't have the right xray views to see if the right joint was affected at all and that I needed an MRI...and more blood work. There was some concern over my right eye--it was red--so I was told to see an ophthalmologist right away to rule out iritis. The PA recommended I start taking Ultram/Tramadol everyday for the pain, but I've been bad about that simply because it used to make me really dizzy (I'm trying this regime this weekend though). And that was pretty much it. He said he knew I wanted an answer but that it would be like pulling one out of thin air at that point. He didn't even tell me what he thought it MIGHT be but did say he didn't think it was AS because it looked as if only one joint was involved and that both had to be if it was AS (I have since read this isn't true). Needless to say I was quite unimpressed and upset. On the way out I picked up my pee cup for that portion of the tests, got my blood work 'scrip, my xray 'scrip, and was told they would set-up the MRI. I also scheduled my follow-up appointment with Dr. B. in MAY--over FIVE weeks away. Yeah, that wasn't cool.
I saw a retinal specialist that day and was diagnosed with epi-scleritis and was told the pressure in the right eye was much higher than the left. This is nothing compared to iritis, which is a relief, but it is indicative of an auto-immune disease and not "good." Unfortunately, epi-scleritis can be associated with several different auto-immune disorders so no way to even guess which one at this point. No big surprise there. A follow-up with my optometrist a week later revealed no more inflammation and that the pressure had equalized. I am to keep an eye on this when it flares up again--it was not the first time, however I had never treated it simply because I attributed it all to allergies (even though it didn't itch).
More blood work was done and the only thing that came back abnormal were my liver enzymes (for some unknown reason). They were elevated. I was negative for all the markers of inflammation but like all the other tests for this type of stuff this doesn't necessarily mean that I am neither inflamed and/or am not arthritic. In fact we know I am arthritic and have an auto-immune disease but it's the "which one" answer that is alluding us--just to be clear.
I had the MRI and xray done on April 19th, and while most of it is Greek to me, I did notice that I have "multiple varices in the pelvis." Varices are basically varicose veins. I was a tad freaked out at first and, as usual, jumped on the internet to research. From what I can gather they call pelvic varices "Pelvic Congestion Syndrome." No one is really sure why it happens yet it doesn't appear that it is anything life-threatening. It causes pain in the pelvic region and other places (re: your va-jay-jay). Reading these symptoms made sense of certain pain I've had...and ignored...for awhile now. Looks like embolization of the affected veins helps a lot of people. Not looking forward to this but maybe it will help resolve other pain I've been dealing with.
The radiologist was very focused on the cysts and lesions in my pelvis which was somewhat of a letdown as we already know those aren't much to worry about--or at least so I've been told. He did say that there were no manifestations of seronegative spondylarthropy seen on the MRI and as of right now I have no idea if that means I don't have AS or if it just means I am not fusing at this point, but could still have it. Also from the report he referenced the SI joints in the plural sense so I assume that both are affected instead of only the left one.
I see Dr. Andrews this Thursday and am really hoping he can make sense of most of my results. I really hate that I have to wait three more weeks until I see Dr. Balentine for his interpretation. I put myself on the cancellation list in case I can get in earlier but I'm not holding out hope. I also left a copy of the MRI and xray report with Denny as he said he'd do his best to let me know what he thought. No word from him yet so we'll see.
At this point I am just hoping it isn't Crohn's. I can pretty much take anything but the thought of Crohn's.
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