... should have said wasn't crying because I thought it was leprosy - never thought that - but just at the 'see you in a year, hope it doesn't get worse' bit.

Check in the 'stickies' section. LizaJane has all the tests usually done to find neuropathy and the causes of neuropathy. It is a shame your neuro upset you with a premature diagnosis. It appears that you have a lot more testing to undergo before any nerve damage can be ruled in or out, let along a cause like leprosy.

Usually an epidermal nerve fiber biopsy (simple procedure) is the test to rule out axonal damage, and without it, axonal damage can not really be ruled out.

HNPP can be genetically tested for, and about 30 Charcot Marie Tooth (hereditary neuropathies) have been identified. No need for him to leave you guessing on those either. Prior to doing genetic testing, you need to know what kind of neuropathy you have. There are literally hundreds of reasons for neuropathy, and hereditary is usually considered when you get put in the 'idiopathic' group, of which 42% eventually is deemed to be hereditary. Not all hereditary has an identified gene locus, so, sometimes, you will be told you have a hereditary PN without locus if other data leans in that direction.

Leprosy is such a longshot, I would not lose any sleep over it. As was mentioned in the other post, CIDP, a nutritional deficiency, diabetes, celiac disease, autoimmune diseases, (many), sarcoidosis, amyloidosis and then hereditary come to mind, way, way before leprosy!

Yes, by all means, get your records, and find a research center, that does skin biopsies, and also specializes in PN.

I think Mrs. D makes an excellent point.
And it does concern me a great deal that some doctors might put their needs first and not try to help and/or comfort the patient.
If your suspicions have been alerted, there is good reason for this.
There is nothing wrong with getting a second (even a third) opinion.
AND nothing wrong with getting your records, doing some of your own research and making inquiries of others.
In the mean time, please make sure you take top notch care of yourself both physically and emotionally.

Mrs. D did exactly what I would have done..Both Drs. diid not have a answer
so Mrs. D made one up. And Lucy your Dr. did the same blasted thing,
Just because you asked good questions he could not answer.Get your
records and run..Hugs to all Sue

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.

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

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.