Sending more ******Positive Energy*********** especially to you Texans! Here's another dose *******Positive Energy*********
Praying that the dr appt is productive. Praying too that you, Ms Becat and others get some decent sleep. That is an ongoing quest for many of us! Nothing I have tried works consistantly ...
As for diabetic diet... I follow no specific diet. Eat three meals with snacks in between to keep blood sugar levels more consistant. What I did initially was test my bodys response to meals and snacks and adjusted my intake accordingly.
One example - a six inch subway sandwich without any dressings two hour glucose test was over 200... so walk it off, next time tried it with half the bread and glucose test right on the mark... Breads etc are not good for me!
A couple things that have helped me is keeping portion sizes in mind ... meat/protein portions about the size of the palm of my hand, fresh fruits and veggies a cup; cooked fruits and veggies half cup...
I joined weight watchers online for 30 day trial to get info on their points system. Several ladies I know have successfully lost weight, and better yet improved cholesterol etc by using this system. It is fairly easy to use. There are a few places online that offer a computer program similar to ww you can download.
Summer is always easier for me as there are more fresh fruits and veggies.
One thing I can use for sleep is to have three oreo cookies with some milk! hahahaha
Hope to hear some good news! Love Hazey
IS THERE LIGHT AT THE END OF THE TUNNEL?
Result of the visit with Sasha....
Hello, everybody! Sorry for the delay! In the meantime I had to do battle with our gate-keeper, who keeps sabotaging my efforts to find out the cause of my wife's anemia. As usual he is in denial (keeps cancelling total blood counts or CBC's). Finally we ended up again in Tyler at a nurse practitioner who was very sympathetic. Ordered a lab test immediately and confirmed that indeed she is slipping on both hemoglobin and hematocrit content. Her ferritin level is so low (8 ng/ml) that she could have RLS, although I do not think she does.
Quick answer to Lynne and then Sara. I would love to have lunch with you gal, but do you think you are up to driving 240 miles to accomplish it? The logical thing would be for me to meet you half way, like in Rockwall. (For that, however, I will have to wait until my wife's situation clears up. She has been put on notice for blood transfusion whenever she is blacking out, so I have to watch her closely.)
Sara, I remember you. The lady from Vermont! Thanks for the good wishes, I hope that you are doing better since we chatted last!
Now to the visit to the neurologist which followed the visit to the endocrinologist (that is a separate topic). I prepared well for the visit. Had a page typed up that contained the following information:
She apparently did not feel comfortable to discuss it. However, she appeared a bit concerned. Her verdict:
Keep taking 1 mg MX 5 times a day about 4-5 hours apart. Take a 7.5 mg/750 mg Hydrocodone also at bedtime.
Have a sleep study done with these medications. Then we shall see... She gave me an appointment in six weeks.
Well.... what is wrong with this plan you ask? First of all, this is what I have been doing (more or less) during the past month or two. I know and she should know that this regimen does not work and I must have a tremendously severe PLMD during the night (wake up like a clock-work in 4-5 hours after taking the medication with very sore leg muscles (those very same muscles that are preferably used in PLM during the night).
Would it not make more sense if we would not waste a sleep test on the obvious, but try other regimen and when the symptoms relent then try to confirm the apparent good results with a sleep test?
Her last statement to me was that she is worried that I have another underlying problem which is covered up by RLS. What that could be she did not reveal. (I emphatically told her I do not have sleep apnea).
She apparently does not believe in (or not familiar with) augmentation or related events. I wonder how severe her RLS is?
I am just about to write her a letter (fax is too open for others to see) where I will bring up these points. She did look concerned and told me to call her (good luck!) whenever I have some problems (I assume with the side effects).
Anyone knows the usual doseage of Mirapex for RLS? Apparently I am taking way too much even for a Parkinson's patient.
Too much about my problem but I thought it may be useful for some of you
Lynne, I have not really changed my moniker. It is still the good ole' jumpy owl!
BTW one more thing "against" Sasha: she does not think I should be playing the violin. Well, I have ignored her advice and took my endocrinologist's advice: I am now wearing a wrist splint (2) at night for something that appears to be similar to Carpal tunnel syndrome - nerve conduction study was inconclusive).
APROPOS violin: among others I am practicing: V. Monti: Czardas. This is a showy gypsy piece about hundred years old. Has some very fast parts, but one can really pour some emotions into it (this is something I could not do well when I played as a younger man (30+ years ago) - now I am getting there I hope, Sara
)
Thanks for "listening"!
(((((love))))) from
Quick answer to Lynne and then Sara. I would love to have lunch with you gal, but do you think you are up to driving 240 miles to accomplish it? The logical thing would be for me to meet you half way, like in Rockwall. (For that, however, I will have to wait until my wife's situation clears up. She has been put on notice for blood transfusion whenever she is blacking out, so I have to watch her closely.)
Sara, I remember you. The lady from Vermont! Thanks for the good wishes, I hope that you are doing better since we chatted last!
Now to the visit to the neurologist which followed the visit to the endocrinologist (that is a separate topic). I prepared well for the visit. Had a page typed up that contained the following information:
Doubts about continuing with Mirapex (pramipexole):
Taking 5 mg per day is still not effective in controlling PLMD but side effects are increasing.
One study showed that daily dose above 1.5 mg has no added significant benefit beyond 1.5 mg/daily dosage.
Side effects are increasing and are bothersome such as:
Loss of brain functioning (vague I know)
Hallucinations (vocal, seldom visual)
Amnesia (short-term)
Leg cramps
Vertigo
_____________________________________________________________
To Treat Refractory RLS (and PLMD) the following tactics in medications have been recognized:
REFRACTORY RLS / Medications
• Change to gabapentin/Neurontine from the present dopamine agonist (that is a possibility – warning: reverse change triggered severe vertigo)
• Change to a different agonist (that is one possibility e.g Requip (but they are similar, are they not?)
• Add a second agent such as gabapentin, benzodiazepine, or an opioid {Clonazepam comes to mind (worked in the past) I actually prefer lorazepam (shorter life time)}
• Change to high potency opioid or tramadol (Tramadol did not work well in the past. )
She apparently did not feel comfortable to discuss it. However, she appeared a bit concerned. Her verdict:
Keep taking 1 mg MX 5 times a day about 4-5 hours apart. Take a 7.5 mg/750 mg Hydrocodone also at bedtime.
Have a sleep study done with these medications. Then we shall see... She gave me an appointment in six weeks.
Well.... what is wrong with this plan you ask? First of all, this is what I have been doing (more or less) during the past month or two. I know and she should know that this regimen does not work and I must have a tremendously severe PLMD during the night (wake up like a clock-work in 4-5 hours after taking the medication with very sore leg muscles (those very same muscles that are preferably used in PLM during the night).
Would it not make more sense if we would not waste a sleep test on the obvious, but try other regimen and when the symptoms relent then try to confirm the apparent good results with a sleep test?
Her last statement to me was that she is worried that I have another underlying problem which is covered up by RLS. What that could be she did not reveal. (I emphatically told her I do not have sleep apnea).
She apparently does not believe in (or not familiar with) augmentation or related events. I wonder how severe her RLS is?
I am just about to write her a letter (fax is too open for others to see) where I will bring up these points. She did look concerned and told me to call her (good luck!) whenever I have some problems (I assume with the side effects).
Anyone knows the usual doseage of Mirapex for RLS? Apparently I am taking way too much even for a Parkinson's patient.
Too much about my problem but I thought it may be useful for some of you
Lynne, I have not really changed my moniker. It is still the good ole' jumpy owl!
BTW one more thing "against" Sasha: she does not think I should be playing the violin. Well, I have ignored her advice and took my endocrinologist's advice: I am now wearing a wrist splint (2) at night for something that appears to be similar to Carpal tunnel syndrome - nerve conduction study was inconclusive).
APROPOS violin: among others I am practicing: V. Monti: Czardas. This is a showy gypsy piece about hundred years old. Has some very fast parts, but one can really pour some emotions into it (this is something I could not do well when I played as a younger man (30+ years ago) - now I am getting there I hope, Sara
)
Thanks for "listening"!
(((((love))))) from
Jumpy Owl
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Wouldn't it be nice to read a different story about doctor's visits? That they listened and said, "Yes, we must do something different." That they knew the research rather than you taking it to them? Alas, is isn't so. I'm sorry that is was not so for you, Jumpy.
I can help you with the Mirapex. In two studies I found, the average dose varied between .5 mg to .75 mg. That makes sense, since the latest Requip study shows it averaging 1.9 mg, which is about 3X the Mirapex dose, and it takes about 3X the Requip to do the same job.
Jumpy, even in the latest, large study for Requip, the highest daily dose was 4 mg, and you have to take more of it than Mirapex to begin with.
You could have something else going on. All of us could. RLS is secondary to many, many things. And PLMD is even less well understood. It wouldn't hurt to take a look at the list of secondary causes in this post:
http://bb.rls.org/viewtopic.php?t=1840
You probably don't, but secondary can be added to primary to make for a worsened situation.
Also, per your wife, has she ever been checked for celiac disease? The most common symptom is anemia, however it's not the only one (there are over 200) and few people present the same. However, it might be worth looking at. http://bb.rls.org/viewtopic.php?t=1935 and http://bb.rls.org/viewtopic.php?t=1616&highlight=celiac
Thanks for keeping us updated. Wish it had gone better, though, and keeping good thoughts for better results next time.
I can help you with the Mirapex. In two studies I found, the average dose varied between .5 mg to .75 mg. That makes sense, since the latest Requip study shows it averaging 1.9 mg, which is about 3X the Mirapex dose, and it takes about 3X the Requip to do the same job.
Jumpy, even in the latest, large study for Requip, the highest daily dose was 4 mg, and you have to take more of it than Mirapex to begin with.
You could have something else going on. All of us could. RLS is secondary to many, many things. And PLMD is even less well understood. It wouldn't hurt to take a look at the list of secondary causes in this post:
http://bb.rls.org/viewtopic.php?t=1840
You probably don't, but secondary can be added to primary to make for a worsened situation.
Also, per your wife, has she ever been checked for celiac disease? The most common symptom is anemia, however it's not the only one (there are over 200) and few people present the same. However, it might be worth looking at. http://bb.rls.org/viewtopic.php?t=1935 and http://bb.rls.org/viewtopic.php?t=1616&highlight=celiac
Thanks for keeping us updated. Wish it had gone better, though, and keeping good thoughts for better results next time.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Ann, you are getting very good at this!
An A+ for an excellent reply. And you even included my wife in it as an extra bonus.
Unless I pull rank on them first and they are receptive, I always ran into trouble with physicians sooner or later. Now this lady with a Russian name, a very strict demenaor and manner, and a lighting quick brain gives the appearance of being very smart. On top of it she also has RLS which she talks very little about. Initially I gave her a lot of material on RLS some I collected and some I wrote. She ;raised one of them at that time so I thought she read or at least glanced at them all. BIG MISTAKE.
Retrospectively I should have elaborated but that is almost impossible with her. She wants yes and no answers at a crack of a whip. (whip is not visible).
Trying to assess my mental state is very difficult. It fluctuates, sometimes it takes me hours to type a few pages of techical matters. Occasionally I lose track of time. Occasionally what I type is gibbersh.
I am convinced that I have to get off Mirapex because I have been on it too long at too high dose and it is clearly affecting me mentally.
The question is how to do it? I already cut down to 1/2 dose 2.5 mg per day. Then I started to have weird hallucinations including double vison just like when I stopped neurontin.
From past experience I know that the least harmful and most effective alternate medication for me would be either diazapine or opiate. Interestingly I have never gotten addicted to either type.
If I am guessing correctly, my RLS started when I started to wean off lorazepan (Ativan) I took for sleeping (small dose).
I am also getting hypotensive and have bradychardia in the last few days
Not at the dangeorus level but certainly made me stopped taking the low dose ACE inhibitor.
Oe thing for sure. I already got rid of her regimen and I refuse to take a sleep test to confirm something I already know. I am writing her a letter tonight and hand deliver it at her office sealed and marked confidential tomorrow.
Thanks for your advice an support!
Unless I pull rank on them first and they are receptive, I always ran into trouble with physicians sooner or later. Now this lady with a Russian name, a very strict demenaor and manner, and a lighting quick brain gives the appearance of being very smart. On top of it she also has RLS which she talks very little about. Initially I gave her a lot of material on RLS some I collected and some I wrote. She ;raised one of them at that time so I thought she read or at least glanced at them all. BIG MISTAKE.
Retrospectively I should have elaborated but that is almost impossible with her. She wants yes and no answers at a crack of a whip. (whip is not visible).
Trying to assess my mental state is very difficult. It fluctuates, sometimes it takes me hours to type a few pages of techical matters. Occasionally I lose track of time. Occasionally what I type is gibbersh.
I am convinced that I have to get off Mirapex because I have been on it too long at too high dose and it is clearly affecting me mentally.
The question is how to do it? I already cut down to 1/2 dose 2.5 mg per day. Then I started to have weird hallucinations including double vison just like when I stopped neurontin.
From past experience I know that the least harmful and most effective alternate medication for me would be either diazapine or opiate. Interestingly I have never gotten addicted to either type.
If I am guessing correctly, my RLS started when I started to wean off lorazepan (Ativan) I took for sleeping (small dose).
I am also getting hypotensive and have bradychardia in the last few days
Not at the dangeorus level but certainly made me stopped taking the low dose ACE inhibitor.
Oe thing for sure. I already got rid of her regimen and I refuse to take a sleep test to confirm something I already know. I am writing her a letter tonight and hand deliver it at her office sealed and marked confidential tomorrow.
Thanks for your advice an support!
Jumpy Owl
Back among the living, I hope!
Hello, folks:
Trying to get back in touch was difficult because I could not get logged in. The computer steadfastly announced that there is no such a member as jumpyowl. I even re-registered. Then suddenly I was logged in??? under my old moniker. Quie'n sabe?
Very brief report as I am pressed for time as always:
Even though I was on a high dose of Mirapex ( 4.0 mg/day) I gradually stopped it completely (in about two weeks) due to augmentation of symptoms and grave side effects.
My neurologist made no comment when I told her what I did. She grudgingly raised the hydrocodone (7.5mg/650 mg) to 45 pills a month.
Since this was the only drug I took for RLS, it proved to be insufficient.
Then she said, see you in six months!
Our communication attempts dribbled to almost nil. My only explanation I could find was that I made a big mistake overwhelming her with material on RLS trying to impress her so she would discuss things with me as colleagues rather than doctor to patient. Now I think this attempt achieved the opposite effect. She wants nothing less than discussing things with me.
Well, I could not have lasted six months on the meager medication she prescribed for me. Occasionally I even had to start taking Mirapex at 1/20th of the previous dose level!
I also found a muscle relaxant taken at night useful so I could get a few hours of sleep (my doctor pooh-poohed the idea). From a different doctor I obtained some lorazepam, and fortunately I have had some extra hydrocodone left over.
So I am surviving. Just recently I decided to attend the the San Antonio meeting to bring myself up-to-date and hopefully to meet some old friends!!!
To close this post on a positive note, I am happy to report that I am doing well on managing my diabetes. Fortunately, I know much more about that affliction than RLS so I could work out a diet and exercise plan which would actually work (unlike the suggested one).
The results speak for themselves:
1. I have lost over 40 pounds since February.
2. My fasting glucose level is usually under 110, occasionally as low as 83 mg/dL
3. The haemoglobin A1c level (reflecting a 2-3 month average blood glucose level) has decreased as follows:
February: 7.2%
May: 6.1%
August: 5.4%
November: 5.3%
I also ran a glucose tolerance test on me (no longer administered except for pregnant women) three times during this year and there is a definite improvement in the various segments of the tolerance curve.
I wish I could report similar good news for RLS/PLMS where the symptoms and the pain level have been getting worse.
Will let you know when I find something that work or whether I have something else besides RLS (as suspected by my neurologist) that is making things harder to manage.
Looking forward to the meeting and again seeing Lynne, Anne, Rubby Slippers, and others, who may come. I would love to meet new friends. I have a bunch of data from the improved survey which I will work up if there is an interest in or need for it.)
SEE YOU ALL IN SAN ANTONIO!
Trying to get back in touch was difficult because I could not get logged in. The computer steadfastly announced that there is no such a member as jumpyowl. I even re-registered. Then suddenly I was logged in??? under my old moniker. Quie'n sabe?
Very brief report as I am pressed for time as always:
Even though I was on a high dose of Mirapex ( 4.0 mg/day) I gradually stopped it completely (in about two weeks) due to augmentation of symptoms and grave side effects.
My neurologist made no comment when I told her what I did. She grudgingly raised the hydrocodone (7.5mg/650 mg) to 45 pills a month.
Since this was the only drug I took for RLS, it proved to be insufficient.
Then she said, see you in six months!
Our communication attempts dribbled to almost nil. My only explanation I could find was that I made a big mistake overwhelming her with material on RLS trying to impress her so she would discuss things with me as colleagues rather than doctor to patient. Now I think this attempt achieved the opposite effect. She wants nothing less than discussing things with me.
Well, I could not have lasted six months on the meager medication she prescribed for me. Occasionally I even had to start taking Mirapex at 1/20th of the previous dose level!
I also found a muscle relaxant taken at night useful so I could get a few hours of sleep (my doctor pooh-poohed the idea). From a different doctor I obtained some lorazepam, and fortunately I have had some extra hydrocodone left over.
So I am surviving. Just recently I decided to attend the the San Antonio meeting to bring myself up-to-date and hopefully to meet some old friends!!!
To close this post on a positive note, I am happy to report that I am doing well on managing my diabetes. Fortunately, I know much more about that affliction than RLS so I could work out a diet and exercise plan which would actually work (unlike the suggested one).
The results speak for themselves:
1. I have lost over 40 pounds since February.
2. My fasting glucose level is usually under 110, occasionally as low as 83 mg/dL
3. The haemoglobin A1c level (reflecting a 2-3 month average blood glucose level) has decreased as follows:
February: 7.2%
May: 6.1%
August: 5.4%
November: 5.3%
I also ran a glucose tolerance test on me (no longer administered except for pregnant women) three times during this year and there is a definite improvement in the various segments of the tolerance curve.
I wish I could report similar good news for RLS/PLMS where the symptoms and the pain level have been getting worse.
Will let you know when I find something that work or whether I have something else besides RLS (as suspected by my neurologist) that is making things harder to manage.
Looking forward to the meeting and again seeing Lynne, Anne, Rubby Slippers, and others, who may come. I would love to meet new friends. I have a bunch of data from the improved survey which I will work up if there is an interest in or need for it.)
SEE YOU ALL IN SAN ANTONIO!
Jumpy Owl
Hi Jumpy! It's Jan
It's so GREAT hearing from you and hearing about your progress.
I am so glad you are going to the meeting in SA. I went last year, but can't go this year due to recent back surgery and am so disappointed that, once again, I won't get to meet you. I would so love that! But, I now how happy the others will be to see you again.
Maybe some day I'll get to meet you, Jumpy. I really, really hope so. Have a great time with your old friends. I miss you here, Jumpy. Just wanted you to know that.
From an old friend
Jan
It's so GREAT hearing from you and hearing about your progress.
I am so glad you are going to the meeting in SA. I went last year, but can't go this year due to recent back surgery and am so disappointed that, once again, I won't get to meet you. I would so love that! But, I now how happy the others will be to see you again.
Maybe some day I'll get to meet you, Jumpy. I really, really hope so. Have a great time with your old friends. I miss you here, Jumpy. Just wanted you to know that.
From an old friend
Jan
No one is alone who had friends.
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ViewsAskew
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Excellent news! I will be great to see you, too - and everyone else who is going.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
OOOOOO Sweet Jumpyowl, How you've made my day. You'll be there this year and I can put my eyes on you and hug you tight. Yahoo! Wonderful news, my friend, just wonderful.
I can't wait and the butterflies just started flying sround my stomach as I read your post.
I'm so glad your doong better, but truthfully, WE MISS YOU around here.
I can hug you asap. I just can't wait. WOW.
You must stay for dinner Sat. and Friday night please go out with us all. Begging here. If your tired I will stay behind so that we can talk quietly, I'll work on the that quiet part. LOL
Yeah Yeah Yeah.
I love you and still behold your heart my friend. Yeah!
Lynne
I can't wait and the butterflies just started flying sround my stomach as I read your post.
I'm so glad your doong better, but truthfully, WE MISS YOU around here.
I can hug you asap. I just can't wait. WOW.
You must stay for dinner Sat. and Friday night please go out with us all. Begging here. If your tired I will stay behind so that we can talk quietly, I'll work on the that quiet part. LOL
Yeah Yeah Yeah.
I love you and still behold your heart my friend. Yeah!
Lynne
It is hard to read...
It is hard to read about all that love and care that radiates from every line without some involuntary lacrimation.
BeCat, I do not even have a hotel reservation yet. I have to call Hyatt but I am afraid they are a bit too expensive for me. I just hope there is a discount for attendees. Otherwise, I will camp near-by. Leave me a message at the front desk and I will do the same on Friday.
I have not signed up for dinner but will see about that once I arrive. I have some business matter to attend on Friday afternoon (putting my viola up for consignment). I am also supposed to play violin in church on Sunday back in Emory but will probably beg off.
Jan, it is too bad we will miss each other. If I survive there is always next year.
Ann, it will be nice to see and talk with you.
You all have been doing such a good job on the board! Otherwise, I would be feeling even guiltier for being so passive on the BB.
See you soon! OOO xxx
BeCat, I do not even have a hotel reservation yet. I have to call Hyatt but I am afraid they are a bit too expensive for me. I just hope there is a discount for attendees. Otherwise, I will camp near-by.
Leave me a message at the front desk and I will do the same on Friday.
I have not signed up for dinner but will see about that once I arrive. I have some business matter to attend on Friday afternoon (putting my viola up for consignment). I am also supposed to play violin in church on Sunday back in Emory but will probably beg off.
Jan, it is too bad we will miss each other. If I survive there is always next year.
Ann, it will be nice to see and talk with you.
You all have been doing such a good job on the board! Otherwise, I would be feeling even guiltier for being so passive on the BB.
See you soon! OOO xxx
Jumpy Owl
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I am staying at other places before and after (I'll be in SA for about 6 days), and found many places under $100, and some even under $50 that got reasonable reviews on Trip Advisor. Some, however, are getting booked up. Of the first twenty best rated hotels, only 1 had space.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.