RLS/WED VS PLM please help

[debbluebird]

Well, I've learned something tonight. I didn't know that I had PLM. From reading some of the discussions it looks like I have it. My legs can jump a foot above the bed. The sensation will start at my hip, going down my leg, causing the muscles to contract and the whole leg will jerk. I thought that was just a part of RLS/WED. The doctors have never said anything to me about it. I have come to the belief that the doctors really don't know what's going on with us. I do get the creepy crawly feelings, wanting me to move my leg, with the RLS/WED. I ususally get that before I fall asleep. I use it as a signal that I need more medication. If I let it go then it turns into the leg or legs jumping off the bed. The longer I wait the worse it gets. I've done that just to see what would happen. There also has been some confusion about my iron levels. There are two readings that have to do with iron. One doctor was having me take iron to get the reading up to 100, which I could never get it up there. Then another doctor looked at the labs and said the other reading was dangerouly too high, and she had me stop the iron. So now I'm really mixed up. What do you all think? DEB

[Polar Bear]

I don't know if I have PLM or not. Certainly I don't have any sensation beforehand and all that happens is that suddenly my leg will jerk. It would happen perhaps 2 or 3 times during an evening but not every evening. I am not aware of it during sleep. I guess I prefer not to have it officially unless it becomes a problem. Others who post and who suffer with PLMs will likely be along in due course. The Board can be a little quieter at the weekend.

With regard to your iron you need to clarify specifically what any readings are for. Ferritin is the iron storage in your brain and for us folks with WED it is better for us if it is up around 100. Blood circulating in your body has different readings. Both docs need to be singing from the same hymn sheet and talking about the same thing, or at least you need to know what each doc is specifically referring to.

[badnights]

Ferritin is a protein that transports iron in the blood. Its levels do correlate positively with WED symptom severity, which is thought from other evidence to correlate with low iron in parts of the brain, so probably it does tell us something about iron in the brain, though I wouldn't know why. But it's not exactly a measure of iron in the brain.

I can never keep the other measures of iron straight, but deb if you write down what the numbers are measuring, we can look them up and figure it out and maybe help understand what your doctors are thinking.

[debbluebird]

Beth, I haven't had a lab taken for iron in a year. I will have to look to see if I have the last one. I need to ask my new doctor to run that lab. Since I don't have insurance I just haven't asked for it. I will be getting insurance next July, a year.
I fell Monday night getting into the tub. Landed on my bad hip. Must have been over a foot, drop. My leg has been bad ever since, with severe jerking, for the last two nights. Haven't tried to go to sleep yet tonight to see how my leg would be. If it's not one thing it's another. But before that the gabapentin that I just started about 10 days ago has really helped. Not as good since I messed up this hip and irritated everthing. DEB

[Polar Bear]

Beth, thanks for giving debbluebird a clearer explanation of ferritin.

Debbluebird, good news that the gabapentin was working for you and hope your hip recovers asap.

[debbluebird]

yes, I had several nights of sleep when I first started the gabapentin. As I increased the dose the better it got. My husband and I couldn't believe it. But since the fall my bad leg had come back strong. Last night I took an oxycodone which worked right away, but I don't like to take them. Didn't take one tonight. so I'm up. I decided to take some ibuprofen, maybe it will calm the inflamation. I guess I will let the doctor know what happened. I'm taking it early in the evening, but I'm still sleepy during the day. Oh well. DEB

[ViewsAskew]

Oh, that fall sounds nasty!

[debbluebird]

My hip is a little better, so legs are better. It always seems like when I have a flare up in my legs/joints with arthritis, it makes the WED/PLM worse. Gabapentin seems to be working ok. Only problem is that I am very sensitive to side affects with most drugs. My husband says he thinks I am more confused at times and have more memory loss with the gabapentin. Oh well, at least the legs are a little better. DEB