First Time Leg Stiffness

[KennyInPA]

So far on my AMN journey my legs have been fairly manageable with no issues with stiffness or spasms. I've been finding myself waking up and my left leg is quite stiff and I have to move it. Once moved it's fine and I'm falling back to sleep. Meanwhile the right leg is still snoozing, the lucky leg! I'm on 900MG of Gabapentin daily, but as time goes on it doesn't seem like it may be doing anything. (Or is it? One does not know until they stop taking it I guess!) What is the plan of attack for leg stiffness from your doctor? I am seeing a neuromuscular specialist in October along with my yearly visit to Dr.Eichler and MRI. Go to sleep left leg!

[monkeybus]

I don't know what I'd do without Gabapentin and Lyrica. I used to wake up with agonising cramps. Pain like I've never known before. Some folks, Baclofen does it. Wish it did for me.

4-AP frees up my muscles as well, and TENS. Really should do more TENS. A lot of trouble strapping it on but I never regret it.

[monkeybus]

KennyInPA ,

What happened to your leg in the end? Did you find any relief?

[KennyInPA in reply to monkeybus]

Hey monkey! It has remained mostly the same, except it developed into more frequent leg cramps. They wanted to try baclofen, but since I wasn't on it at the start of the MIN-102 trial they decided against it for best for the trial. Otherwise it's not constant and some nights I sleep without interruption and I just deal with it on the other nights. I just had an increase in Vitamin D prescription, so will see if that helps as well. As you know, it's a game to see what happens with this stuff! Today my legs hurt, took my trial dose, and it felt a little better.

Totally unrelated to this subject, but I developed basically a vertigo like dizziness when I lay flat on my back. The neurologist deemed it as vertigo and prescribed some PT, which I looked at as a waste of money as it's only when I'm flat. I got to see a new endocrinologist in Boston who decided it was time to start hydrocortisone on a daily basis, opposed to a stress level. What do you know, the hydrocortisone fixed me up and I don't get the dizziness spell anymore. I felt like I won something finally that worked for the better of the disease!

[monkeybus in reply to KennyInPA]

Yes, always get a second opinion. I get dizzy quite a lot, ever since I was a kid. Though i think mine is related to me unfeasably low blood pressure. Is it just me with low pressure? That's a discussion for another time.

I just saw your post from 8 months ago and it rang a bell with me. If I go two days with Gabapentin then my legs are in a shocking state. (trying to) sleep is one battle, but in the morning my legs feel like rotting meat, that's the best description I could come up with. Just bad. Like i want to chop them off. Though I don't seem to get the agonising cramps anymore. Small mercies.

Gabapentin, Lyrica or Ma-ri-wanna, and to a certain extent booze fixes it up nicely.

Take care, bro. Talk to you later.

[KennyInPA in reply to monkeybus]

Rotting meat! I totally get that and while I'm still developing into this AMN game, I get it.

One thing I did notice is that I went off of Gabapentin for about two days for a work trip I forget the drugs at home. While it was mostly all sitting, I did do some walking and noticed little difference without it. I brought it up in Boston and again they want me stay on it for the trial, but it could the MIN-102 is replacing that of what the gabapentin was doing.

I have found relief in some an AFO product that was recommended to me from the muscular neurologist team. I went on a trip to Las Vegas last weekend and I count three times my foot caught marble or tile where I normally would have fallen. This thing basically left me rocking, but didn't let me fall. They were expensive, almost $2,000, but my insurance company picked them up. Here is a link to a similar product..

shop-orthopedics.com/Ossur_...

Gives me more confidence to get around without the worrying you will look like a fool part!

Best to you Money!

[monkeybus in reply to KennyInPA]

That's quite the device. Carbon fibre?

An orthosis is on my list, has been for some time now. I am making do with this at the moment

ossur.co.uk/injury-solution...

For what it is, it works exceedingly well, and I only need for one leg (at the moment).

[KennyInPA in reply to monkeybus]

I've seen those, which probably do about the same thing. Yup these are carbon fiber, super light. I call them my bionic legs!