Nonclassical 21-hydroxylase deficiency poll

[webslave]

New research suggests we may have an enzyme deficiency. Here are some of the symptoms. Do they apply to you? Mark all that apply.

[ramana]

I did not have any bone problems but very very creaky joints everywhere.

[uksufferer2]

wow a lot of those apply to me ...I'm going to try get a gene test for cyp21a2 mutations asap

[graeme]

wow a lot of those apply to me ...I'm going to try get a gene test for cyp21a2 mutations asap

How and where would you get this test ?

[Jay]

Hi,

Only the 'tall as a child' option applied to me. Hope this helps.

[uksufferer2]

wow a lot of those apply to me ...I'm going to try get a gene test for cyp21a2 mutations asap

How and where would you get this test ?

I've just started looking at this ,

In the first instance, you would need to be referred to your local regional genetics centre by your General Practitioner (GP) - wanting a test for nonclassic CAH (cyp21a2).
http://www.bshg.org.uk/genetic_centres/ ... entres.htm

only a couple of centres in the uk can perform this test apparently but you can visit your local center and they will forward on the specimen.

off to see my gp this week ...guess the hardest part is convincing them the test is valid for you as i presume its pretty expensive ...i printed out Dr Dimitrakov paper off pubmed to take with me
http://www.pubmedcentral.nih.gov/articl ... id=2390769

let me know how you get on if you try as well

thanks

[Canuck]

I scored high on the poll, and I am also taking part in the study. It will be interesting to see the results from my tests, once found.

[uksufferer2]

I scored high on the poll, and I am also taking part in the study. It will be interesting to see the results from my tests, once found.

hi which study is that? what tests and medication have you been given? ...good luck

[Canuck]

hi which study is that? what tests and medication have you been given? ...good luck

The study is done through Harvard medical, and no medication have been given, as it isn't determined yet if I carry the deficiency.

I was achieving a lot of success though mind/body work, stress reduction, PT, etc. But, ultimately, my symptoms returned. No trigger points were ever really found, and the only real success I had through alternative means has been Traditional Chinese Medicine, aside from the Mind/Body work. That all being said, I am sure those avenues work for others. Currently I am taking Lyrica (Pregabalin), which I think is beginning to give me some relief, but this is just a band-aid, covering up some of the symptoms. I also think part of my issue is bladder related, which I am looking into.

[carld]

I was tall as a child and early puberty...But I am Sicilian

[uksufferer2]

Hi guys just thought I'd give anyone interested an update ... struggling to get the gene test at the moment but got a hormone level test and everything was normal except for progesterone! Which was the hormone most raised in the study compared to controls (about 3 times the normal value ).

[h92]

Ok this is a very late answer, but in addition to voting I figured it was worth mentionning that I have more or less the opposite of listed stuff :

1) I had very late puberty (I was 1,50 at age 15, shaved for the first time at age 19)
2) I am a bit taller than average
3) I was very short as a child, up to the point where family doctor was worried and sent me to a specialist
4) I am fertile
5) no bone trouble
6) normal acne
7) no balding, while my father, his father, etc ... were all bald at 20-25

The more I read about chronic prostatitis / chronic pelvic pain syndrome the more I think it has different roots for different people (food allergies, this stuff ...). The fact that a lot of us are better with stretchs, PT etc ... might just be that our different root causes result in muscular tensions that are helped by this.
Just my 2 cents.