Long AMN symptoms post. Plainly, I have a lot of time on my hands.

[monkeybus]

Hello folks, here is a sort of distorted timeline of me and AMN. All of the symptoms, most anyway. It starts when I was about 6 years old. Have a read, let me know if any of it chimes with you and your symptoms.

Warning, this post contains the word "testicle", and a reference to sex, and recreational drug use. Plainly, I am a degenerate

When I was 6/7 years old, the facial tics started. I used to wrinkle my nose like a bunny rabbit. All the time, like 20 times per minute.

Finally stopped, then when I was about 8, I would pucker up my lips, like a big, exaggerated kiss. All the time.

Next year, I would blink repeatedly. That lasted 5-6 years, off and on. That was a long one, constantly screwing up my eyes.

A certain level of fatigue set in around the age of 13. All my friends wanted to walk the streets at night, after school. Not me. I was happy with the TV, and my computer (Commodore 64). I felt tired.

Around the age of 15, the tic involved me sticking my tongue out, like a snake.

Took a fantastic amount of willpower to stop the tics.

When I was 16, the constipation started. A few times, I experienced what I can only describe as red hot pins and needles cascading down my back. Happened one time when I was getting off a bus. I was mildly concerned.

At the age of 22, my legs would bubble. Felt like tiny bubbles, like in cola, moving through my legs.

Around the age of 23, that’s when I started waking up continually in the night. My sleep architecture was destroyed. I fixed it by taking Melatonin.

But Melatonin was illegal in England at the time. Eventually the shops stopped selling it. Back to booze and dope.

When I was 26, a couple of times (when drunk), I'd just collapse. And I was a hardened drinker. Always the last man standing.

At 29, the first major depression set in. 6 months, I never left the house.

When I was 30, the varicose veins started.

At 35, I had a shockingly painful sore throat, then, right after, get ready for this, my right testicle swelled up. Huge. Imagine the pain.

This was the turning point for me, that is when the AMN reared up and started to destroy me. The testicle swelling was either AMN related, or it triggered something in me. Gave the AMN the green light. Right testicle, my spasticity is predominantly in my right leg.

I went to a urologist, he told me it was sexually transmitted, I hadn’t touched a woman in over a year.

Around the age of 35, the leg spasms started. First I thought it was cramp, then Restless Leg Syndrome. I tried hot patches, compression stockings, stretching. The only things that would stop it were either Booze or Benzo's (I'd stopped smoking the devil's lettuce by now.).

Spasticity after that. But I assumed it was my varicose veins.

Waited 10 years to get my veins stripped. Minor improvement in my walking ability. I kept the veins. They are stored in formaldehyde.

Bad fatigue by the time I was 40, and the spasticity is ramping up.

Went back to the cardiovascular dept, they sent me to neurology.

Hereditary Spastic Paraparesia.

Genetic test, and here we all are. AMN.

They talk about childhood onset and adult onset. Like it's that cut and dried.

I believe all of the above was AMN related. I think the tics were the first symptom, then all of the rest.

The VLCFA’s were working their magic from an early age.

When I was 23, I started getting manias. Not like some bi-polar mania, that's hyper-mania. But these manias were better than any drug. Wide awake, I felt like I was ascending. If I could bottle it and sell it, I'd be a millionaire.

Didn't bother me one bit. See, up to then I'd smoked a lot of weed, done some acid, and I'd been meditating for a few years. I'd read a lot of books about Zen Buddhism and the nature of consciousness. The manias seemed half-way normal to me. I'd just sit there at work, doing my breathing, quietly enjoying being in paradise.

The manias came and went over the next decade or so.

But, here's the thing.

When the spasticity started to be noticeable, very mild at first (thought it was varicose veins). When it started, the manias ramped up. I was up at 4am, buzzing, any break at work I'd hit the street and walk, couldn’t sit still. Walk, must walk, walk, walk.

One thing as well, any time I had influenza, just before the ‘flu hit, I'd get a mania. I guess it's my body sensing the disease and flooding my body with endorphins or whatever.

When the spasticity and fatigue finally kicked in properly, for a full 6 months before, I experienced the most intense mania of all.

Absolutely fantastic. Again, wide awake at 4am, felt amazing, so much energy. Of course, I wasted it all by just sitting at the PC watching movies.

Around the age of 40, at night, my eyes were bone dry. Every night. The only thing I could do was go to bed.

Right, that’s it. I can’t be bothered typing any more. You all get what I am driving at with all of this.

Here is the question, all of you with adult onset, are there any symptoms you had as a child that you think could be linked to AMN?

[wilburlois15]

I apparently had problems learning to walk, probably when I was below the age of 2. Nothing serious, and by an age I can remember, everything was fine, but it was pointed-out and monitored by health officials.

[monkeybus in reply to wilburlois15]

Try this.

And, this was 10 years ago (more, even), when I had no symptoms, maybe mild fatigue.

Imagine a fish hook embedded deep within your forearm. Now, imagine an electromagnet slowly pulling that fish hook from the elbow area of the muscle towards the fingertips (left arm). Spasticity is in the right leg.

Anyway, imagine the pain.

That certainly got me worried 10 years ago. My wife said maybe it was maybe too much typing at some weird arm angle.

Had it again the other day. Painful

I'm thinking spasticity, muscles tightening up. A friend told me that a muscle pain is the worst. I can believe that.

This isn't your neuropathic pain. This is your regular pain. Painful.

[cdp71]

Monkey,

No one could ever accuse you of being boring. Further, from the tone of your email, I would never guess that you suffer from fatigue. However, given what I have dealt with, I believe you. I maybe have experienced some of the same things that you are talking about. About 1.5 years ago I started feeling very wired. I could hardly sit still at work. Lately, it has been the opposite. I drag myself through the day just waiting for the time when I can lie in bed. If I ever make it back to the UK, we will have to meet up. Good luck with your battle.

-Chris Phillips