Sad, weary, and let down

For everything and anything else not covered in the other RLS sections.
jumpyowl
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Thanks Ann!

Post by jumpyowl »

Well, I want to emphasize that the chemical name for vitamin C is ascorbic acid. It is an antioxidant, it oxidizes readily but it is destroyed in the process.

You wrote:

But a few months later, I took a large dose of vitamin C to fight a cold and I started itching all over: face, arms, trunk. So, maybe it was ascorbic that caused it, I thought.


Well, it could have been the large dose! It would be terrible if one would be allergic to a vitamin!!!

BeCat is right. Actually this vitamin was discovered by a Hungarian Professor Szentgyoergyi in Hungarian peppers (paprika) and later received the Nobel Price for it. I think cranberry also contains lots of this vitamin.

Peace and sound sleep. My legs have never been this crampy! Darn! :cry:
Jumpy Owl

ViewsAskew
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Day 10

Post by ViewsAskew »

I just got back from a business trip. On Monday, I spent from 4 PM to 12 AM on my feet doing a training for second shift at a plant. On Tuesday, I trained from 8 AM until 3 PM. Thank goodness the meds were working Monday night so I got a few hours sleep. That schedule could have been a nightmare!

I got home and there was a message from the "new" neuro's nurse. She said that my ferritin levels were low (they were 23 at the last test at my PC's). I called her today; the levels are 9. She referred me back to my PC for further help and to find out if there is a cause. The nurse also said that the neuro had consulted with another specialist in the practice (I was told she was a specialist in RLS) and that from now on I was to see the other doctor. This is quite amusing because the doctor the new neuro referred me to was the one I originally had the appointment with, but it was almost 5 months away. My PC called to try to get me in more quickly and was assured that this other neuro was also a specialist in RLS so I should see her instead. Guess she wasn't such a specialist!

Now that I'm a patient in the practice, I only have to wait 1 1/2 months to see the one I originally wanted to see :D . That's much better than 5 months, however, no one has made any med changes, so I'm still sort of just trying combinations by myself for a little while longer.
Good thing that going off of the Mirapex for 4 or 5 weeks reduced the augmentation tremendously. I can use it again with only a few of the side effects and use a lot less. Still wish I had something that didn't cause those side effects :roll: .

Ann

ViewsAskew
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Update

Post by ViewsAskew »

I went to the sleep clinic this week to meet with a doctor to see what his/her recommendations were for the sleep study. The last time I had a sleep study, the neuro just sent me for one and the sleep center did it. This time I had to be evaluated by someone at the sleep clinic first.

This time I knew I was in the right place. He listened. He asked the right questions. He "got" it. At the end of the interview, he even thanked me for having educated myself about the syndrome :!: :!: He said it made it a lot easier to be able to talk about it since I understood the language, terminology, etc. I almost stood up and hugged him!. He knew that my ferritin levels should be higher, but didn't know that the current recommendation is a minimum of 45 to 50. He actually checked that with another sleep doc (this guy is finishing up his final rotation--the sleep center is at a major medical school-- and specializing in sleep) and then came back and let me know that I was right! What a difference from the neuro just a couple of weeks ago. . .

He didn't change any meds and I'm still only sleeping 4 hours or so a night, but that is much better than when I wasn't sleeping at all. And sometimes I am blessed with 6 or 7 hours, albeit not great quality. Even if it's not all that refreshing, it makes me less stressed not to be up pacing the floors :wink: .

The study is this coming week, so hopefully they will be able to interpret quickly and I'll get a followup visit soon.

jumpyowl
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Wonderful!

Post by jumpyowl »

This is indeed a great news! Knowledge conquers! at least some of the time! :)
Jumpy Owl

ViewsAskew
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Knowledge is king

Post by ViewsAskew »

Knowledge DOES conquer. . .well. like you said Jumpy, at least some of the time. In the case of us RLSers, it's essential. So many of us here have directly and indirectly benefitted from our own educational process. Guess that's a good time to say THANKS! All of the people here that have shared their time, knowledge, concern, hope, and love. . .I appreciate it tremendously.

Ann

Randy Mc Kee
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Post by Randy Mc Kee »

Venting.
Drs. are frustrating.
Before I had a Neurologist, I had tests for circulation, X-Rays...all that stuff and kept getting told nothing was wrong. The Drs. were satisfied with that and were done with me. Nortwest Indiana is not exactly known as a Hub for brillant Drs...most people who have serious medical conditions, cancer and heart trouble for example, are wise to make the trip to Chicago for treatment.
Around here, some Drs are so paranoid about giving out drugs it's hard to get anything except Motrin or Ibuprofen, and really...drugs like Vicodin are abused and sold on the street so much, it ruins it for those who really need them.
One of my Drs started prescribing one Vicodin a day..."take one tablet before bedtime every day". But after a couple months cut that off, telling me I couldn't stay on Vicodin the rest of my life, but not giving me any other options.

One thing I was wondering...being new to this board and diagnosis.
I always...24/7 have leg pain too. My legs are stiff, tired and achy all the time. Does anyone know if it's related to the RLS? My lower back (lumbar region) "goes out" once in awhile...muscle spasm...and I've always thought it was probably the back causing the legs to hurt.

Randy

jan3213
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RE LEG PAIN, ETC.

Post by jan3213 »

Hi Randy, it's Jan

I'm not sure if I have welcomed you or not. But, welcome anyway!!! Glad you have found us!!!

I have had RLS for over 20 years and, during the past year, experienced leg pain and cramps, which got increasingly worse. I, too, am really stiff when I get up in the morning, and, even sitting in a car or a chair for just a little while will make me really stiff. I have other symtpoms, too, which I won't go into here.

I was recently diangosed with fibromyalgia. I wonder if you might want to be checked out for this. You may very well not have it, but it might be something you might want checked out. If you'll go to www.imunesuport.com, you'll get a lot of good info.

Again, welcome so much to our board!!! You'll find lots of support and great information here!!! We're like a family--we help each other!!!

Take care!

Jan
No one is alone who had friends.

ViewsAskew
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1 month

Post by ViewsAskew »

It's almost been a month since my fateful visit with the new neuro. Dec 30th I had the sleep study. The newest doc told me it wouldn't be a problem to go to sleep late and stay late, so I wasn't worried about being kicked out at 6 AM as I was last time (different center). Of course, that wasn't to happen. The tech wanted to hook me up at 9 PM - I don't normally get to sleep until midnight or 1 AM and I almost always have RLS between 8 and midnight. I convinced her to leave me alone for awhile and I read and wandered a little when the RLS started in. I still had that 'threatening' feeling at 11:30 when she came in. I let her put on all the stuff, assuming I could convince her to keep from plugging it all in until the RLS stopped. The next things I knew, without her even asking if I had to use the restroom, I was connected and couldn't move more than 4 feet!!!

I made her disconnect me so I could use the restroom. When I came back, she reconnected me and turned out the lights. And the RLS started for real. I laid in that darn bed, at first just letting them kick when it built, then unable to stand it, I started doing scissors kicks, hurdle stretches, bicycles, etc. in my bed. I finally settled for sitting on the side of the bed in the dark and jiggling. After a half hour, I took another clonazepam (was trying to take less for the study), and in another 35 minutes or so, I got to sleep, around 1:15 or so.

At 5:35, the RLS started and woke me. I was trying to force myself to get back to sleep when I heard the tech on the intercom. She wanted to know if I wanted to go ahead and get up now or wait 25 more minutes. I was confused, I told her. I said I was told I could stay later. Oh, she said, on a normal day I could, but this was New Year's Eve day and no staff was there after 6 AM! So I had to get up, even if I could have stopped the RLS and gone back to sleep. I didn't have a ride scheduled to get me until later, so I was stuck trying to figure out how to get home on public transportation at 6 AM and the hospital is not in the best part of Chicago. Fortunately another tech was going home and lived close to me, so he gave me a ride home. Thank goodness!

Not sure when I'll have the results, but am curious. I'm out of town on a business trip all week, so hopefully I will know something by the time I get back.

Ann

jumpyowl
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Hello, Ann:

Post by jumpyowl »

It appears that the communication link between the tech and you was not there. You wrote:

...she reconnected me and turned out the lights. And the RLS started for real. I laid in that darn bed, at first just letting them kick when it built, then unable to stand it, I started doing scissors kicks, hurdle stretches, bicycles, etc. in my bed. I finally settled for sitting on the side of the bed in the dark and jiggling. After a half hour, I took another clonazepam (was trying to take less for the study), and in another 35 minutes or so, I got to sleep, around 1:15 or so.

At 5:35, the RLS started and woke me. I was trying to force myself to get back to sleep when I heard the tech on the intercom. She wanted to know if I wanted to go ahead and get up now or wait 25 more minutes.


Were your legs wired up? If so how could you do those exercises? But the most interesting is that the tech never came in and tried to find out what you were doing? Was she not watching the somnograph??? :shock:

I will be very interested how much info they got out of that test. Would you share them? BTW Are they going to give you a discount since the test was less than they promised??

I am sure you will tell them right, Ann, these tests are quite expensive so they should be liable (I can dream :roll: ).
Jumpy Owl

ViewsAskew
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Post by ViewsAskew »

Hi Jumpy,

The wires were connected loosely to a spot around me knee, then to my waist (a belt), then to my shoulder (I think) and then to the wall. I just couldn't get more than 3 or 4 feet from the wall. But since the wires ran up my legs, they didn't inhibit leg movement. I only got semi-tangled a couple of times and it was easy to untangle.

I wondered myself what the tech was thinking. She certainly never responded to me in any way. I almost called to her and told her to come and unhook me until it stopped, but then I thought it would be interesting to see what they make of the first hour of the test. Guess all those leg movements will be recorded :lol: . At least no one will say I don't have the damn disorder :P .

I am truly annoyed that I didn't get to finish it like they said I would. On my current regimen, I awake at 4 to 4 1/2 hours of sleep, and go back to sleep 70% of the time. It takes anywhere from 5 minutes of stretching to a couple of hours of being up before I can get back to sleep. Then I usually get 1 1/2 hours more. I wanted to see what happens in the second 1 1/2 hour period of sleep. I wanted to see when (if) I'm getting any slow-wave sleep and how much REM I get. I get some in that second sleep period, but just curious as to how much.

Will share the results when I get them!

Ann

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Re: RE LEG PAIN, ETC.

Post by Guest »

jan3213 wrote:Hi Randy, it's Jan

I'm not sure if I have welcomed you or not. But, welcome anyway!!! Glad you have found us!!!


Hi Jan, thanks for the welcome. Nice to meet you and nice to be here.

Ann's post got me thinking about my sleep study.
When I was discussing the sleep study with the Neuro Doc, I told him a sleep study would never work with me. I can't sleep in hospitals, or motels or really anywhere 'cept my bed, so he gave me a couple sleeping pills to take...Ambien. So when I get there, it just so happened that my back had gone out a few weeks earlier and I had one Vicodin left that I was saving for when I needed it. So I told Eva, the Sleep Lady that I had the Ambien and that most sleep medications I'd ever taken had made my legs bother me so I was gonna take a Vicodin with it. She said...go ahead.
Then I find out that Codeine is one of the treatments for RLS. So how could I have gotten an accurate sleep study done after taking Ambien, a sedative, and Vicodin?
I don't know.
Apparently they still discovered the RLS, but I wonder how much of it was noticable under all that medication? You know, I wasn't even thinking about my leg problems. I didn't even know the RLS was keeping me from getting good sleep, once I got to sleep...matter of fact, at the time I didn't know anything about RLS. All I knew about a sleep study was they looked for Apnea (which I still can't spell).

Ann...you have my sympathies. I must have a light case of RLS compared to what you're describing going through. I hope they get you fixed up.[/b]

Randy Mc Kee
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Post by Randy Mc Kee »

By the way, that last post was from me.
I don't know why, since I did log in, my name wasn't by it.
I gotta get used to how this board works I guess.
Sorry for the confusion.

Randy.

jumpyowl
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SLEEP TEST

Post by jumpyowl »

Hi, Randy: I hope you do not mind my answering your post about the sleep test. I have been posting on that topic quite a bit - you may want to look up my original thread "Self-diagnosed" starting at the end of page 2 on the Forum of "New to RLS" (see link below).

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=13&postdays=0&postorder=asc&start=15

RLS often occurs together with PLMD (periodic Leg Movement Disorder) and only the latter can be detected by a polysomnograph. Basically they measure the number of arousals or near arousals and when it is at least 20 per hour, PLMD is judged to be severe.

There are several medications that is effective in eliminating the paresthesia, or creepy crawling feelings while awake but do not eliminate PLM.

Just in my humble opinion, there is no accurate measurement of the severity of RLS, except the frequency of PLM (the disorder that about 80% of RLS patients have)at which each arousals one comes up to sleep level stage 2 (still asleep, but not the restorative sleep). If there is pain associated with RLS that is still subjective and depends and several factors, one of them which is "attitude toward pain."

You will probably receive several comments. This is my two cents worth. :)
Jumpy Owl

Randy Mc Kee
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Post by Randy Mc Kee »

Thanks JumpyOwl. You're saying that RLS and the leg movement are two different things, so the Vicodin wouldn't necessarily stop the leg movement, just make them feel better.

So my next question is...is the Mirapex supposed to help the RLS or the PLMD? (Cause so far it's not doing a whole lot for the RLS)

jumpyowl
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Yes, Randy:

Post by jumpyowl »

RLS one can have on its own but the majority of RLS patients will also have the leg moements. However, many people can be affected by PLMD and have no RLS (PLMD is much more frequent than RLS from a number of causes.

Mirapex as a genuine dopamine agonist should have a [ositive effect on the crawly creepy sensation. And it does in about 75-80 percent of the cases. It may also decrease PLMD but I am not 100% sure about that.

What does of Mirapex are you taking? Tell me more about the symptoms you are having and what medicines have you tried for them already and with what effect?
Jumpy Owl

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