restless legs: I am just wondering if anybody... - AMN EASIER

AMN EASIER

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restless legs

Andrew-432 profile image
9 Replies

I am just wondering if anybody else as the same symptoms as me I am 56 with AMN. I think I have restless leg syndrome as they keep twitching and moving as they want but the main problem is when I want to pass urine my legs straighten this is uncomfortable and can through me back in my chair just wondering if anyone else as the same or similar symptoms just waiting to hear your answers thanks Andrew.

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Andrew-432 profile image
Andrew-432
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9 Replies
monkeybus profile image
monkeybus

I originally thought I had RLS, or I thought I had cramp, or they were hypagogic jerks.

First neurologist I ever saw told me they were in fact spasms.

And they were.

Started out as mild twitching, something that stretching would solve, now I jerk about like 20000 volts of AC is streaming through my legs.

Only Gabapentin/Lyrica/Marijuana/booze will stop them.

Spasms/clonus/spasticity, maybe they all go hand in hand.

I keep threatening to post a video of me walking on 4-AP, I also keep meaning to upload a vid of my spasms.

Used to be fatigue was my #1 enemy, then spasticity. Now it is spasms.

My mother is going to a private pain clinic on Harley Street today. For her pain. The NHS has let her down for too long.

I shall accompany her, if I like what I see, I'll book (pay) for a consultation as well. My symptoms are only getting worse.

Andrew-432 profile image
Andrew-432 in reply to monkeybus

Thanks for the reply monkey bus I do find that whisky calms them down at night I will try my GP for some of the medication do they have a Harley Street in Australia or are you in the UK now

monkeybus profile image
monkeybus in reply to Andrew-432

Harley Street is England's premier private medicine area.

270 Pounds for a 30min consultation.

Private medicine goes against all I believe in, but has to be worth a try. For different medication at least.

I'll report back on this.

Cherie profile image
Cherie in reply to monkeybus

Please let us know what Harley Street says. I would be very interested to know what they suggest for pain.

monkeybus profile image
monkeybus in reply to Cherie

Hello Cherie,

For my Mother's back pain, the overpriced doctor recommended a decent anti inflammatory for immediate relief, then marinating the disc with cortisone, then physiotherapy.

He says a 40% drop in pain is on the cards.

He was also amazed the NHS hadn't already done all this.

He says if that doesn't work, then Botox, if not that, then he'd burn off the nerves.

I told the doctor she was a carrier of AMN, he made no comment.

Andrew-432 profile image
Andrew-432

Yes I Know Harley Street in London but I thought you were in Australia so with the cost of the flight it would be expensive.

Hillary profile image
Hillary

Hi monkeybus, what is your mums actual diagnosis for her back? I have a protruding disk and all I'm having for it is stronger pain relief

COwithAMN profile image
COwithAMNAdministratorAMN EASIERVolunteer in reply to Hillary

Pain relief is something that medicine doesn't have any guaranteed cures for in my experience. I don't think the private sector is any better most of the time.

I speak not in relation to me but my wife who had a very bad time with a disk hernia (protruding disk) which sounds like what you have Hillary. It was so bad that no pain meds worked, she couldn't sit, had to lie in the back of the car when she travelled, etc.

We tried a private pain clinic in London whose remedies did nothing for the pain. Eventually (after nine months) we found a private London back surgeon who explained that a protruding disk (usually L5 or L6 lower back joint) means the contents of the disk has spilled out and is pressing on the sciatic nerve. He said he could fix it with a keyhole operation and overnight stay in the hospital. What the operation does is essentially to vacuum up all the residue from the disk. Next day the pain had gone. It cost I think £2,000 perhaps. The reason the NHS does not recommend it is because a lot of back pain goes away naturally, but they are not good at determining which type you have.

This keyhole operation is quite common now so it may be worth investigating where you live. I think it is called microdiscectomy, lots of refs when you google.

chris

bluejadedwho profile image
bluejadedwho

Lyrics helps a lot, especially at night in bed. Also I would try magnesium.

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