just back from the neuro... leprosy!
 

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....

Leprosy is called Hansens Disease now. While not common it does exist in the US, and is gaining steam, especially along the southern border states and cities with a high imigration rate. There is a treatment center, in the south somewhere.

You might want to check with a doc that specializes in infectiouse diseases if you think it is possible. It's very treatable, not like what we see in the movies.

In any case, I wish you well.

It is very hard to comment on what is going on, given the paucity of test results presented. On what basis did the neuro rule out demyelinating or axonal damage?

One thing strikes me as possibly clinically significant. Charcot Marie Tooth may present with 'palpable' hypertrophied nerves. CMT would present with either demyelinating or axonal degeneration.

Thanks for your reply.... I know what you mean about the paucity of tests. The NHS here isn't really set up to investigate.

He told met that my nerve conduction tests came back 'in some respects better than normal'. He tested for tyhroid, b12 etc. and all came back fine, I have clear MRI's and he tested all my reflexes (results as above), stuck pins in me etc. (which just proved the numb patches and sensory loss).

I asked him directly if it was demyelinating or axonal and he couldn't find evidence of either. He had thought it was definitely HNPP before the nerve conduction tests.. but now said he wouldn't put me forward for genetic testing because the nerve conduction tests were fine and they certainly wouldn't be.

Could you tell me what tests I need in the short term to check this out?

Apologies that I am only just catching up with all of this.

Aaarrrggggghhhhhhh!
 

I HATE it when doctors do this to patients. Throwing out that bogus diagnosis, to you... was a lame attempt on his part to look intelligent. But in reality he
said that only to impress you with his intellect (which must be weak and shaky)

Here is a link to symptoms of Hansen's disease:
http://www.health.state.ny.us/diseas...fact_sheet.htm
http://hlunix.hl.state.ut.us/epi/fac...s/leprosy.html

Do you have skin lesions? Leprosy or Hansen's disease starts in the fingers and toes for initial skin lesions. (not large nerves like the lateral femoral nerve in the thigh).

When my husband was in Vietnam, I visited his family doctor for a minor thing, this was back in 1971. I did not know he was a bum and my husband's family were only using him because he would come to the house for Grandfather.
He took blood (I think I had a sinus infection or the like) and told me I had a serious blood disease! Then gave me a dangerous antibiotic for my infection,
called Chloromycetin (which causes aplastic anemia--and I didn't take) and was taken off the market here shortly thereafter. Needless to say, he did not impress ME with his prognostications...trying to look important. He wanted me to come in twice a week for NOTHING! I am still here, 60 yrs old and do NOT have a blood disease!

This neuro sounds like a piece of work to me! Beware! What he is really saying to you is --"I don't know what is wrong with you". But in reality he threw out that diagnosis and that makes YOU anxious! It is just a power play and basically cruelty directed towards you to make his ego feel better!

Beware doctors' egos!

Thanks for your reply....

No skin lesions ever... so I am sure I haven't got it.

I am really pretty upset by it all as I think it was part of educating (showing off in fact) to the pretty young female doctor who was observing.

They were both incredibly patronising when I said that I would like to ask some questions (based on links you guys here gave me - thanks): things like did he think it could be infectious, metabolic, inflammatory etc., did he think it was axonal or demyelinating.

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.

I don't really know what to do next... I guess I need a new plan but I obviously can't leave it a year just to get worse. When the last two blood tests come through I will get all my records from the hospital and all my test results and start filling in LizaJane's charts... and then will try and find a new neuro (that task feels like a mountain to climb here).

I felt so depressed when I got home, and actually cried about it this morning...

... 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.

Oh My
 

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