Tuesday, 15 November 2011

From the beginning

When I was living in Berlin last year, around February/March, I started to notice my hands didn't look right. Underneath all my finger nails on the skin were deep, red patches and what appeared to look like a rash appeared on my knuckles on both hands. I had arranged to come home to surprise my parents the following weekend as I hadn't seen them for three months, and whilst I was home, I went to see the GP. He took one look at my hands and was baffled. He gave me a couple of creams which he thought might help and told me to come back in a months time if they hadn't cleared. I went back to Germany with my new ointments and proceeded to use them for a month. Nothing changed and I had also developed itchy rashes upon both of my upper arms and my face around my nose and eye brows was also red. I then came home again for Passover and went back to the GP. Also baffled by my hands, he looked at my arms and said that it was Folliculitis, a common skin rash in young males, and prescribed me the normal treatment for this and also proceeded to refer me onto a dermatologist.

About a week or so later, we managed to make an appointment to see the dermatologist the GP had reccommended. We sat with him for a while explaining the "story so far". He wasn't the most talkative and was rather awkward. He ran some blood tests and told us to come back tomorrow. After a very nervous evening, we returned the next day to find the bloods were all clear. Phew. He did prescribe some more creams. He also arranged for me to have a skin biopsy above my left eye brow. I returned to Germany for my final month where I had taken up yoga a couple of month ago. I did however stop because the muscles in my thighs and arms started to really ache and it was quite painful to move and about a week or so before I was scheduled to finish my time in Germany, a large lump formed in the right half of my neck....

Back to the GP we went. He felt my neck, said he didn't think it was anything TOO serious and told us to go to an ENT surgeon, and also a rheumatologist about my muscles. Both appointments made. Back to the dermatologist for the first of what was many biopsies. He took some of the skin using a local anaesthetic and what looks like a tiny cookie cutter from above my left eyebrow and sent this off for testing.

Meanwhile, the rheumatologist had ordered scans on my neck, the CT scan came back inconclusive, so the radiologist performed an ultrasound where it was much clearer what was there. It was a lymph node and he decided to perform a fine needle biopsy. This involved a very large needle being inserted into the lump in my neck and extracting the fluid from inside to be sent for tests. By this point I was being called  medical phenomenon, and this is still very early days! Yet again, this came back inconclusive and we went to the ENT surgeon. At this point, they were talking about Lupus and Dermatomyositis, both rare auto immune diseases, also difficult to diagnose.

Also slightly baffled, the ENT surgeon performed a couple of tests, including shoving a telescope up my nose to have a look at the lump. He wanted to excise it for testing. A week or so later, I was back in the hospital prepped and ready to go for general anaesthetic one of three in three months. We were told the surgery would last around half an hour, and there should be little or no complication with around a 2cm incision Wrong. Nearly two hours later I returned from surgery. The mass in my neck was tangled around my jugular vein and carrotted artery, and the incision made was around 7-8cm. I stayed the night in hospital so they could monitor me over night. He came back and saw me the following day, saying that he thought it looked like TB. Off to the next doctor...

We met the chest physician who had been reccommended by my grand-parents next door neighbours, whose son had TB a few years ago. From what we had told him, and what the ENT surgeon had told him, he also believed it to be TB. He'd also ordered more blood tests and asked us to come back to his TB clinic to meet his team, the nurses, and start me on the medication ASAP, because he said that if it was TB and wasn't treated straight away, the mass in my neck would rupture and burst. The TB medication involved 11 pills a day, for around 6 months. Fun. I started the medication and waited for the test results to come back. Meanwhile, he wasn't happy with the tests the dermatologist had performed, and said the rashes on my arm were not consistent with TB and looked like nothing he'd seen before and suggested we see another dermatologist who he highly reccommended.

I think this is now consultant number 5 or 6... We went to see the new dermatologist, a very nice lady, who also wasn't very happy with what the previous dermatologist had done. She said my rashes definitely look auto immune, and the chances of having both TB and an auto immune disease was EXTREMELY rare. She wanted to perfom more biopsies and decided to biopsie some of the skin on my knuckle and on my lower arm. She did these the same day, both under local anaesthetic. She also prescribed some strong steroid creams for the rashes.

We went back a week later where she had the results of the biopsies, and they were confirmed auto immune rashes. This was one of the weirdest consultations to date. We were with her for nearly 2 hours, she was on the phone for most of it speaking to the labs who had performed the tests and other doctors. Another dermatologist was also brought in to look at me, as my case had seemed to puzzle many a consultant. Both her, and the TB doctor wanted me to see another rheumatologist who they both knew, to get a confirmation of the diagnosis for an auto immune condition, either lupus (which was looking less likely) or dermatomyositis.

More to follow


  1. I just wanted to wish you the best of luck and hope everything is ok in the end. :)

  2. Wheres the bit about the iPad and the bit about Britney!!!

  3. Glad to see you're keeping busy! Don't forget all those snot nosed kids asking 'What's that on your neck!' O kids!!
    Big Love!!!