Dissapointment

It should not come as a shock to me that I have been let down by previous doctors. I knew it, or rather suspected it. But still, I am shocked! I didn't want to "know" they had let me down.

Yesterday I met with my Rheumatologist in Denver, Dr Koval. He is so nice! I like going to visit him! He did a physical exam, and noticed that I have lost the muscle that runs down the inside of the knee on both legs, part of the quad. He said the name, but there was no hope of me remembering what it was. That is not uncommon with the amount of steroids I have taken over the years. So I have to do physical therapy for that. Ok, that works. He also said that even though I was told by the bone density test that I didn't need to take calcium, I really still should. Ok. The visit ends and I come home.

I get a call this morning from him and he says that "we need to talk about some of my test results." I had been off of the methotrexate because it appeared it wasn't helping with anything, and I had been on too high of a dose. In doing so we learned that my lupus is attacking my muscles. It was hindered by the methotrexate, so I go back on it. This alone is not bad news.

Previously, between Koval, Villacress, Bull, and others, we had discussed how I had overlap. I didn't look too much into this because I knew what it meant. Turns out I also needed to know what this encompassed. I knew I had lupus. I knew I showed overlap with Scleroderma. Here is where the new muscle involvement comes in... I now have over lap with myositis. I decided to go online and find what muscle involvement was all about. This is the website I looked at. I will pull a few major points out that struck me.


Blood vessels are the most common target of injury in all of these diseases.
In myositis, weakness especially affects the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted) and shoulders (inability to lift a weight onto a high shelf or comb one's hair).
Other features less common in SLE than in SSc(Scleroderma) include: scarring of the lower portions of the lung (pulmonary fibrosis); difficulty in swallowing solid foods such as bread or meat; and heartburn or indigestion from stomach acid "refluxing" (coming back up) into the esophagus.
Women with anti-SSA sntibodies are at increased risk of having babies with "neonatal lupus." Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).

Some of this will hit some of you like a ton of brick, other parts with make no sense to others. Here is why it caught my eye. I have Pulmonary Hypertension, which is caused by the destruction of the blood vessels in the lungs. When I lived in Fort Collins, I had to cut my hair because it was both getting thin and I couldn't brush it. I have a lot of problems with stairs, at times I can't do it alone. I had a HUGE problem with swallowing not too long ago, and still have it! I have very bad reflux. I am so scared of the pulmonary fibrosis. Xena showed sun sensitivity, and Holly died because the electrical system that controlled her heart was affected by my anti-SSA antibody, her heart slowed to a stop.

So much of this occurred long enough ago that I should have been being monitored for PH!! It NEVER should have gotten to stage 4 without treatment. And now I am concerned that I have to watch for Pulmonary Fibrosis. Well, if I get that, I get on the transplant list immediately.

Again I find myself overwhelmed.