just back from the neuro... leprosy!

lucy101 · 03-20-2008, 06:03 AM

Hi there - and thanks for your reply - He doesn't think I actually have leprosy... he was said that because he couldn't work out what it was.

Thanks for the info. about the biopsy... he seemed very sure that he could tell from the nerve conduction tests that I didn't have axonal damage... guess I was fobbed off again.

He told me I definitely don't have CMT of HNPP... or any genetic disorder or the nerve conduction tests would have not have been normal... so he won't put me forward for the genetic testing.

I have a feeling that he is just leaving me in the 'idiopathic' group... I just want to check all the tests he has done agains LilzaJanes charts and with another neuro so I can find out what exaclty has been ruled out.

lucy101 · 03-20-2008, 06:05 AM

Thanks for your reply... you have been so helpful.

I think I was just upset about the come down... as I had to wait 6 months for the appointment... which meant that there was a huge build-up for me.

I am starting to ask around for a new neuro now.

Mark Hall · 03-22-2008, 12:43 PM

Lucy101,

I quote what you said earlier:-

"I also bought up Chlamydia Pneumoniae (I have had penumonia and have asthma and repeated throat and chest infections) and they obviously didn't know what it was.. and just kept saying this isn't caused by Chlamydia (which CPn isn't!).. which was humiliating."

Most doctors know virtually nothing about the cpn bug. My partner has been bedridden with M.E/CFS for 2 years. She was found to have cpn infection and shares many of the symtoms that you mention.

Thanks,

Mark Hall

sylvana · 02-20-2011, 11:43 PM

Quote:

Originally Posted by lucy101

well... that's what he said he would diagnose if I had ever actually lived/travelled in Africa or India etc... but I have never travelled outside Europe and Canada and the US and the last known case in the UK was in 1925 apparently.

So... now he is stumped... did a blood test to check Lyme but he is pretty certain it isn't that either.

He told me he couldn't find any demylination or axonal damage.. but I also heard him whisper to the younger doctor who was sitting in that he wasn't sure if it was CNS of PNS.. or both together. I only had full spine and brain MRI with/without contrast last summer so he feels there is no point doing them again now. He said to me that he had ruled out 99.9% of things.

I am pretty fed up as now I guess I have to get all my records from the hospital (which is the top neuro hospital here) and do masses of research... and maybe find a new doctor in the US. The neuro today just said that he couldn't help, and he would see me in a year and hopes that it doesn't progress too much in that period... which I fear it will... as it already is.

I got a few more details from the exam: the left ADM weak at 4/5, Slightly depressed reflexes supinator triceps and ankles, dropped an isihara plate on right eye, one palpable nerve on right elbow.

Just adding that if it rings any bells for any of you with anything else it could be....

I have been diagnosed with leprosy after running from doctor to doctor for 3 years. If you have a palpable nerve it could be a sign. Go see a doc who knows the disease and who will consider it seriously. I had not travelled in any endemic country myself and still caught it.

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