I had also been back to the chest physiscian, who had all my TB results back. I didn't have TB. He'd ordered a very specific blood test for TB and other rare tropical infections, all of which came back negative. He did assure us it was the right thing to do (starting all the TB meds), just in case, because, as I mentioned before, had it been TB and gone untreated, who knows what would have happened in my neck. He signed us off, and handed us to the new dermatologist and rheumatologist. Had it not been for him though, connecting us to the new doctors, God knows what would have happened as they seemed to have gotten into a rut.
Meanwhile, the muscles in my arms and legs were still really painful and the rheumatologist, although had already put me on anti-malarials (treatment for lupus), the chest physician and new dermatologist weren't convinced of this and wanted my to see their rheumatologist friend (these three consultants are all friends and work at the same hospital). Off we went to see the new rheumatologist...
We went to her consultation suite to meet her and began to explain the whole story again. She did look very young, but definitely knew what she was talking about. She'd already spoken to the dermatologist and chest physician and had ordered for me to have more blood tests before we saw her. She was convinced of a diagnosis before we met her. She performed a couple of tests on my muscles and told us that it definitley wasn't lupus and almost certainly dermatomyositis (which literally means inflamed muscles and skin and is caused by problems with your immune system...probably should have mentioned that earlier). She asked if I had been sent for a muscle MRI (which we'd never heard of) and was shocked the other rheumatologist hadn't done so. I'd had an MRI on my neck and torso, but not the muscle specific one.
For those who haven't had an MRI before, they are not the most pleasant or relaxing of experiences (and this was now to be my second). It's like being in a coffin underneath a pneumatic drill. The first one they gave me headphones and some music, which I could barely hear, but this one they didn't.
We went back to the rheumatologist the following week, and she had the results from the scan. They confirmed that my muscles were inflamed, particularly those in my thighs and we are getting even closer to a final diagnosis. What she then wanted to do was give me three batches of steroids intravenously (through a drip) to relieve the pain. She said that this would greatly help the pain, and relieve the redness and itchyness on my arms and face. After the first one, she called us back in to see how it went, there was only a very mild pain relief, and my arms and face were both still itching. This is not what she wanted to hear. She then suggest I go for a muscle biopsy, where they remove some of the muscle under a general anaesthetic from my thigh, she also reccommended a plastic surgeon who was able to perform this, and it would also give a clearer confirmation of the diagnosis.
After another day in hospital and another general anaesthetic later, the results came back confirming inflamation in my muscles. I had the second and third dose of steroids before going back to the rheumatologist.She started me on the Dermatomyositis medication, immuno suppressants, which are meant to knock out your immunue system, so that it can be "re-built". The steroids still hadn't kicked in...
Whilst all this was happening, to add to all the enjoyment, the scar on my neck started playing up. It had grown a cyst and kept leaking (was disgusting) and wasn't healing properly. The rheumatologist who had seen it, told us to go back to the original ENT surgeon. He said it could be infected and gave me anti-biotics and told me to come back in two weeks. Two weeks had passed and nothing had changed. It was still leaking, and pretty horrendous in appearance. He then put silver nitrate on it, which is meant to help the healing.
Things then went from bad, to worse. I felt another lump under my right arm, and was rather uncomfortable to touch. The ENT surgeon and the rheumatologist both had a feel, and suspicions arose, thus sending me to a further surgeon who specialises in that area. He again had to hear the full story and gave me a thorough examination. He wanted to remove the lump under my arm, and said he could do it that very day. My third operation and general anaesthetic in three months, we returned to the hospital later that day with over night things knowing the surgery would be late. He removed two lymph nodes, one large and one small and said the surgery went well. He sent the nodes off for testing...
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