Doctors, diagnoses.

[monkeybus]

At my insistence, my brother had his VLCFA levels checked. His doctor told him he has a "mild form of AMN".

He's not the slightest bit concerned. After all, hasn't a doctor told him he's basically in the clear. Just a mild form of the disease.

All this leaves me looking like some family hypochondriac/doom-merchant.

But then again, first I thought I just had Varix Disease, then it was upgraded to Heriditary Spastic Paraparysis, then AMN. No doctors/neurologists took it seriously until my current one.

I can see that if I'd been satisfied with Varix disease, or even HSP, I wouldn't be that concerned at the moment. But I can't unread what I've read.

Then again, I'm 45, he's nigh on 50 and compared to a lot of people I've corresponded with we do indeed have a "mild form".

I can't help but think that whatever stripe of doctor he is dealing with is out of their depth.

It does though demonstrate the power of the human mind/suggestion. Nobody wants to be told they have an incurable metabolic disease. Even my mother is refusing to have her hormone levels checked, and she is in chronic pain. But, she blames the Statins for that. I've just read that Statins can damage your mitochondria.

Either way, if I wasn't used to living in major capital cities and dealing with neurologists at the top of their games I can see how I could have easily been un/misdiagnosed.

Regardless, my brother left his local hospital without so much as a prescription for Baclofen.

[Cherie]

Hi Monkeybus

Where does your brother live? Perhaps someone on this site can help with a local doctor or specialist. Don't give up.

[SongStream]

I have an older brother also with AMN and Addison's and it was because of him that I found out I, too, have it. As we know, this disease affects us all differently, so it makes sense your brother might have a milder form. I have neuropathic pain but my brother doesn't. He is in a wheelchair - I'm not. I would be interested on other AMN (ers) who also have brothers with AMN and the differences (if any) of symptoms.

[monkeybus in reply to SongStream]

Yes, it's true. But my main bone of contention is that his doctor told him he had a mild form, nothing to worry about, purely on the strength of a blood test.

[julie_ in reply to SongStream]

Hi SongStream, my brother who is younger than me has more severe symptoms than I do. While I am still active and can walk without aide, my brother has a very difficult time even with a cane. My brother was suffering for a decade without diagnosis until we were diagnosed together. This lapse in time may have prevented him from seeking appropriate medical attention in time, whereas as soon as I found out I set about getting attention. Also, of course, he is male and his symptoms just are characteristically worse than mine.

[SongStream]

I agree with you. How can a doctor determine that your brother has a mild form just by looking at his fatty acid profile?

I'm with Cherie and would follow up with a real specialist. Where's his residence?

[SongStream]

Julie, does your brother have Addison's as it is life threatening without corticosteroids.

I feel that my doing yoga and deep stretches prior and after diagnosis has prevented me from being in a wheelchair. I have learned at my first ULF conference to "use it or lose it". I still have pain, spasticity and fatigue but I am grateful of what I can do today.

[monkeybus]

My brother knows where to go. I've given him all the information he needs.

In England, if you find a good doctor, you tend to trust them. I don't blame either my mother or brother for taking a doctor's word at face value. We have an extremely rare disease, nobody wants to be told they have it.

Even more so if you are not a regular doctor-visitor. I certainly was not.

Both my brother and mother's doctors were insisting on seeing a letter of proof from one of my (many) neurologists. Likely they don't want to clean out their entire budgets on rounds of never ending, expensive tests. Postcode lottery combined with clueless doctors. And I am talking Manchester and London.

If I hadn't taken the initiative, I'd still be under the apprehension that I had HSP, and I would probably be happier.

Still, knowledge is power. Especially the knowledge that my son is in the clear. That was my main concern.

For all my supplements/anti oxidants/mail-order pharmaceuticals/yoga/TENS/EMS, I do feel I am at least putting up a decent fight and I am 100% with SongStream on the power of Yoga and indeed meditation.

Just the Trikonasana, the Triangle pose is enough, or even something as simple as feet and legs together and touch your toes (I can). Try and do the splits (I can't). Feel all those spastic, knotted up muscles melt away.

I measure my walking distance every day, I aim for 10,000 steps. Easier said than done.