Possible AMN

[Jacksprate]

Hello,

Maybe I am posting

in the right place. First my doctor thought I had chronic fatigue,

then MS, but after my latest visit she said she’d run a vlcfa

test. She isn’t a very good doctor to be honest. Forcing me out

of the door.

After I returned

home, I Googled vlcfa. Mostly I have been reading this site. That’s

when I started panicking. I thought MS was bad enough. Seems my bad

leg is actually spasticity, my fatigue really is fatigue, I was

hoping I was just feeling run down. I thought I was getting better

but seems I was just getting used to my condition.

Haven’t received

my results yet, if the lab is as incompetent as my doctor it’ll

take a while yet, but I’m preparing myself the best I can. My

friend has MS and she told me about some of the medicines she takes.

I especially like the look of Modafinil and Ampyra. Wish I had

insurance now. I’ll have to buy online, maybe one of those

Canadian pharmacies.

Could I ask a

question? If my vlcfa levels are high, do I still need a genetic

test? If so, do I have to pay? I live in the US, though I have

family in London. I am happy to get on a plane.

Thank you very much.

I feel a lot better for finding this site. If anybody has any

advice for me, I am all ears.

[AussieBob]

Yes you do need a genetic test. I live in Australia with a free health system so that part I cannot help with

[monkeybus]

Hello Jacksprate ,

Another new member, welcome. Though none of us want to be here. I think you should hold out for the genetic test. America, I don't know, I am in England, but we have plenty of American members on here. Your doctor sounds like most of the GP's I have been forced to consult. I've said before, you have to see a specialist, if only once a year.

I don't want to overload you with bad news, but you may need hormone tests, MRI's, the genetic test, and, of course, drugs.

Can I ask how old you are?

[StevenSims]

Hi,

You definitely need to see a endocrinologist to check your adrenals as fatigue is a symptom of Addison's disease! However not all men are affected with this, it would also be good to see a urologist about bladder troubles, I think the vlcfa test is good for diagnosis of AMN Also it is wise to check your family tree as its X linked!

All the best

Steve

[monkeybus]

Indeed, I shall back up Mr Sims. Your symptoms will be your own. Quite a few of us here, and pretty much we all have broadly different symptoms.

I was positive I had Adrenal issues, my fatigue being so bad, but no, all good. I wish I knew exactly what was causing my fatigue. though I suspect it's all to do with the Krebs Cycle

en.wikipedia.org/wiki/Citri...

Or is it ATP?

lifeextension.com/magazine/...

Either way, I am still working on it. Modafinil for now.

[Mamring]

The genetic test is done by Invitae, and they only charge $100 to take the test if insurance doesn't cover it. You should verify this, and make sure it is the same with no insurance. You should wait to see the VLFCA test results first. But while waiting you could see an endocrinologist to check adrenal function. I highly recommend Univ. of Minnesota/ Dr. Troy Lund if you do have the ABCD1 gene.