Self-diagnosed

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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sardsy75
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Re: This is destroying my life!

Postby sardsy75 » Wed Aug 25, 2004 7:10 am

techie wrote:I have totally uncontrollable jerking of my legs and an occasional "fling" of my arms (I drop or throw things on occasion without knowing why). I think I sleep ok, but on the other hand I feel tired even after what I think is a full nights sleep. On the other hand, my wife gets very little sleep since on most nights my legs and arms jerk every 20 seconds or so (she lays awake timing it). When I am awake, I feel the tingling and burning sensation just prior and if I concentrate on stopping it, I actually end up in pain and with cramping. My wife is an RN and was the first to suggest this and we did mention it to my primary doctor (I see a D.O. primarily). Based on the symptoms, he too said that it "could" be RLS but that there was nothing that could be done unless it actually affected MY sleep patterns and not just hers...except for sleeping in seperate beds. I know this can't be the only solution.


Hi Techie

Welcome to the group!

From your description of your constant rythmic limb movements while you sleep, it sounds like you could have PLMS (Periodic Limb Movement Syndrome), also known as nocturnal myoclonus, as well as RLS.

I've attached a couple of links for you below which might help you, your wife, and your doctor/s out:

http://www.sleepfoundation.org/publicat ... t_plms.cfm
http://www.wemove.org/myo/
http://www.talkaboutsleep.com/sleepdiso ... intro1.htm

Have you had a sleep test done? If not, this may answer a few of your questions.

Take care of you!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

jumpyowl
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Welcome techie!

Postby jumpyowl » Wed Aug 25, 2004 1:20 pm

Quote:
I have totally uncontrollable jerking of my legs and an occasional "fling" of my arms (I drop or throw things on occasion without knowing why). I think I sleep ok, but on the other hand I feel tired even after what I think is a full nights sleep.

On the other hand, my wife gets very little sleep since on most nights my legs and arms jerk every 20 seconds or so (she lays awake timing it).

I am not sure whether I should take you literally. You mean that your wife does not sleep much every night or occasionally when she is timing you? If the former, the solution is simple, she should sleep in a separate bed or possibly in a separate room! As a "true spouse" I am sure you can see the importance of that.

When I am awake, I feel the tingling and burning sensation just prior and if I concentrate on stopping it, I actually end up in pain and with cramping.

This sounds like nerve pain and not typically RLS pain. Does this pain stops with movement? Probably not. You could still have RLS becasue some of them do have peripheral nerve pain. Neurontin appears to be indicated here.

My wife is an RN and was the first to suggest this and we did mention it to my primary doctor (I see a D.O. primarily).

As an RN she does need her sleep even more!

Based on the symptoms, he too said that it "could" be RLS but that there was nothing that could be done unless it actually affected MY sleep patterns and not just hers...except for sleeping in seperate beds. I know this can't be the only solution.

Why not? It is easy to do and not harmful. You should have a serious talk with your D.O. He/she seems to need a refresher course on RLS. How does your D.O. know that it does not affect your sleep pattern? Did he order a sleep test? Of course his statement: "nothing can be done...." is nonsense. You most likely need another doctor to handle this problem.

Now maybe someone can tell me how to either reduce or eliminate this thing or at least the affects!

Well, if it is RLS with burning pain, the answer is most lkikely Neurontin. If you read some of these posts, it is onvious that there are several groups of medication (four to be exact) that were found to be helpful in cases of RLS/PLMD. Have you seen the posts on algorithm of RLS management?

Key issues for me are the following:

1) I am ADHD but control it without medication since I have been living with it since my earliest memory.

2) I take Xanax to control a severe case of Social Anxiety Disorder but only when needed (when faced with crowds etc.).


XANAX is a benzodiazapine and that is one of the four types of medication that helps RLS. The problem with that is that you only take it occasionally.

3) Yes I like to have an occasional beer...and my wife does say that this makes it worse...I wouldn't know, it seems that it is the same to me.

It may be hard for you to judge.

4) My work is extremely stressful and requires some periods where I work on less than 2 -3 hours of sleep a night for a week or more if lucky( I usually realise that I am sleep deprived at about the hallucination or speech slurred stage unfortunately). But when I finally get the oppurtunity I sleep for 10 - 15 hours or even more...and I "think" it is quality sleep.

Not a healthy life style. RLS patients are usually unable to sleep 15 hours even when exhausted.

5) My dietary habits stink...I have a weight problem REVERSE of what everyone else has and some wish for, I have to eat 4K + calores a day to maintain my weight and I forget to eat which means that I "crash" when my sugar level drops which appears to make it worse.

Hypoglycemia is also bad for you. I wonder whether you have Syndrome X - hyperinsulinism.

Why can you not fix #1?

Either way during the day, it is embarrasing to have this happen in public and my wife is at her wits end.

My question is simply do I have something like RLS or am I ignorant and anyone would have symptoms like this given the lifestyle choices I have subjected myself to.


And if I am a victim of this, is it realistic to assume that I could something really different to reduce it, do I just live with it or does it ever just go away?

Yes, you can (and only you can) do something about it.
It will not go away, rather it will ruin your life and your wife's life.

Can I control this with just a change in diet and if so what?

Most likely not!

Switched off the Xanax for a while and tried Zoloft but it didn't work for me as well as the Xanax.

No wonder, as Zoloft is an antidepressant medication definitely CONTRAINDICATED in RLS.

Based on what I read in this forum, I THINK I am at the right place...if someone tells me otherwise then I will just keep searching.

You mean you will just take someone else's word and stop researching RLS? Please keep in mind that you will have to learn about these things until you know more than your doctor (which is usually not a hard thing to do)!

I am sorry techie for being so blunt but I think somebody has to wake you up." The road you are travelling on appears to have all kinds of danger signals.

I hope you stay with us at least until you learn more about this affliction. We will try to help you, but you also have to try and help yourself.
Jumpy Owl

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Re: Welcome techie!

Postby Guest » Thu Aug 26, 2004 10:39 pm

jumpyowl wrote:Quote:
I have totally uncontrollable jerking of my legs and an occasional "fling" of my arms (I drop or throw things on occasion without knowing why). I think I sleep ok, but on the other hand I feel tired even after what I think is a full nights sleep.

On the other hand, my wife gets very little sleep since on most nights my legs and arms jerk every 20 seconds or so (she lays awake timing it).

I am not sure whether I should take you literally. You mean that your wife does not sleep much every night or occasionally when she is timing you? If the former, the solution is simple, she should sleep in a separate bed or possibly in a separate room! As a "true spouse" I am sure you can see the importance of that.

(Ya on bad nights I wake up to find her in the guest room)

When I am awake, I feel the tingling and burning sensation just prior and if I concentrate on stopping it, I actually end up in pain and with cramping.

This sounds like nerve pain and not typically RLS pain. Does this pain stops with movement? Probably not. You could still have RLS becasue some of them do have peripheral nerve pain. Neurontin appears to be indicated here.

If I don't attempt to fight the movement, then less pain...the pain is really compounded from me "tensing" once I feel urge for the leg to jerk. (My kids think it is funny....guess you have find humor where you can).

My wife is an RN and was the first to suggest this and we did mention it to my primary doctor (I see a D.O. primarily).

As an RN she does need her sleep even more!

Based on the symptoms, he too said that it "could" be RLS but that there was nothing that could be done unless it actually affected MY sleep patterns and not just hers...except for sleeping in seperate beds. I know this can't be the only solution.

Why not? It is easy to do and not harmful. You should have a serious talk with your D.O. He/she seems to need a refresher course on RLS. How does your D.O. know that it does not affect your sleep pattern? Did he order a sleep test? Of course his statement: "nothing can be done...." is nonsense. You most likely need another doctor to handle this problem.

You know I was thinking just that very thing...how does one know for sure whether or not they are having sleep issues. Honestly I have no idea how much time I spend in each sleep level. I live in Colorado and was thinking about heading up to some of the doctors listed in Denver.

Now maybe someone can tell me how to either reduce or eliminate this thing or at least the affects!

Well, if it is RLS with burning pain, the answer is most lkikely Neurontin. If you read some of these posts, it is onvious that there are several groups of medication (four to be exact) that were found to be helpful in cases of RLS/PLMD. Have you seen the posts on algorithm of RLS management?

Hmmm...I'll have to ask them about that.

Key issues for me are the following:

1) I am ADHD but control it without medication since I have been living with it since my earliest memory.

2) I take Xanax to control a severe case of Social Anxiety Disorder but only when needed (when faced with crowds etc.).


XANAX is a benzodiazapine and that is one of the four types of medication that helps RLS. The problem with that is that you only take it occasionally.

Ya, I am supposed to take it every day, but the it makes me a little to laid-back to actually work!

3) Yes I like to have an occasional beer...and my wife does say that this makes it worse...I wouldn't know, it seems that it is the same to me.

It may be hard for you to judge.

4) My work is extremely stressful and requires some periods where I work on less than 2 -3 hours of sleep a night for a week or more if lucky( I usually realise that I am sleep deprived at about the hallucination or speech slurred stage unfortunately). But when I finally get the oppurtunity I sleep for 10 - 15 hours or even more...and I "think" it is quality sleep.

Not a healthy life style. RLS patients are usually unable to sleep 15 hours even when exhausted.

5) My dietary habits stink...I have a weight problem REVERSE of what everyone else has and some wish for, I have to eat 4K + calores a day to maintain my weight and I forget to eat which means that I "crash" when my sugar level drops which appears to make it worse.

Hypoglycemia is also bad for you. I wonder whether you have Syndrome X - hyperinsulinism.

No clue what the real problem is...they just tell me something about ketones (spelling?) and that I need to eat more.

Why can you not fix #1?

Either way during the day, it is embarrasing to have this happen in public and my wife is at her wits end.

My question is simply do I have something like RLS or am I ignorant and anyone would have symptoms like this given the lifestyle choices I have subjected myself to.


And if I am a victim of this, is it realistic to assume that I could something really different to reduce it, do I just live with it or does it ever just go away?

Yes, you can (and only you can) do something about it.
It will not go away, rather it will ruin your life and your wife's life.

Figured that.

Can I control this with just a change in diet and if so what?

Most likely not!

Switched off the Xanax for a while and tried Zoloft but it didn't work for me as well as the Xanax.

No wonder, as Zoloft is an antidepressant medication definitely CONTRAINDICATED in RLS.

Based on what I read in this forum, I THINK I am at the right place...if someone tells me otherwise then I will just keep searching.

You mean you will just take someone else's word and stop researching RLS? Please keep in mind that you will have to learn about these things until you know more than your doctor (which is usually not a hard thing to do)!

I am sorry techie for being so blunt but I think somebody has to wake you up." The road you are travelling on appears to have all kinds of danger signals.

I hope you stay with us at least until you learn more about this affliction. We will try to help you, but you also have to try and help yourself.


You know the biggest fear anyone has is verifying something like this even existing and affecting them....I would rather shrug it off and probably would have if my wife wouldn't have laid down the law and said I had to do something about it....and of course, she wins ;) Anyhow, guess I have to start looking at this in a more serious manner.

jumpyowl
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MY SAGA, continued

Postby jumpyowl » Sat Aug 28, 2004 9:27 pm

Well, the paresthesias have returned with a vengeance. However, I have been so busy that I could not post here.

Two nights ago, I woke up with a terrific cramp in my left lower leg. I jumped out of the bed and massaged my leg to make it relax a bit. It kept hurting even today, two days later.

I took a muscle relaxant (Zanaflex/tinazidine) 2 mg, and a strong opioid. I went to work because I was afraid the cramp will retun. Around 6 am I tried to sleep with a couple of magnesium oxide pills and a klonopin as well as another muscle relaxant (2 mg).

I woke up at noon and did not take my Mirapax and Ultram until going to bed which was at 11 pm. So the time interval was 14 hours between the two consecutive doses of Mirapex/Ultram. Way toomuch! I have not even fallen asleep when I had a terrific case of paresthesia. First time in weeks if not months!

I got up, still had the pain now in both legs threatening to cramp up. Another muscle relaxant and strong opioid. It did not help so I broke down and took one hydrocodone (7.5 mg/650 mg) Shame on me! That finally helped (compare this event to Elfrieda's relying on Tylenol 3. ) There is something about codein and RLS....!!!

Then I woke up at 3 am and came out to work. Went to bed at 6:30 am with a sleep aid and slept until 1 pm. By then the questionnaire revolution broke out thanks to Nadia's instigation.

Now that my circadian rythm is messed up, I will be playing it by ear. Probably will work at night. Nobody is around except the cat, who spends hours in deep sleep on an armed and stuffed chair next to me making me jelaous. :oops:

I will try to go back to Mirapax 0.5 mg and Ultram 50 mg. The others I will not use, and will definitely keep away from Hydrocodone. Now if I could only figure out what caused the severe Charley's horse, I would be content. Supposedly there is now a bunch of microtears in the leg muscle which will take days to heal up. I will try not to have another cramp soon if I can help it. 8)

I am losing a few pounds but nothing significant. My vital signs are on the low/normal side.

Back to work. Chin up, formication down! :)
Last edited by jumpyowl on Sun Aug 29, 2004 10:59 am, edited 1 time in total.
Jumpy Owl

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sardsy75
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I'm not surprised really!

Postby sardsy75 » Sun Aug 29, 2004 1:18 am

You are sooooo sleep deprived I'm not really all that surprised that your legs have decided to scream "Enough!"

Take one step back for a day or two and REST!!!

We all appreciate the enormous amount of time you have spent on this project and cannot thank you enough; but keep in mind, you need to take care of yourself as well!

(((((HUGS))))) to you!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jan3213
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JUMPY - Take care of yourself

Postby jan3213 » Sun Aug 29, 2004 2:59 am

Jumpy - This is Jan

I know you're on a VERY IMPORTANT MISSION for ALL OF US, but Nadia's right! In fact, I started to post almost the same message to you this afternoon. I don't mean to be "bossy", but I know how it is to be "caught up" in something and forget your meds, or forget to rest, and before you know it, your legs "remind" you, even though you forget. PLEASE TAKE CARE OF YOURSELF!! You've done such a great thing for all of us (Becat, too and Nadia) and everyone is responding (YEAH). Just think what this might mean for us and people in the future! So, as Nadia said, step back and TAKE A REST! Your family needs you and we need you.

Fondly,

Jan
No one is alone who had friends.

jumpyowl
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TOO MANY PROVIDERS

Postby jumpyowl » Thu Sep 02, 2004 9:53 am

I almost ran out of Mirapex two weeks before I could refill (I doubled my dose morning and evening instead of just the evening. Strangely, I did not receive much co-operation from the sleep doctor's office. Just to recall:

I am getting a small amount of Lorazepam from Dr. C

I am getting Mirapex (and could get more Neurontin) from Dr. Johnson, the pulmonologist.

I am getting Ultram from my pain doctor, Dr. R........

who does not really want me as a patient, (I think he sees me enough as his patient's father.)

I finally sent a FAX to Dr. J's office when I knew he was there. This was adressed to the nurse. where I explained why I need an increase in dose.

Finally I received a call from James, the physician's assistant, with whom I had a nice chat once free of charge.

Now he was not very amiable but still respectful, and clearly he did not want to increase the Mirapex dosage. Finally when I cornered him (I can do that better in person) he admitted that he was reading Dr. J's notes (I do not believe that, I think Dr. J was in the room but he does not like confrontation.) And what Dr. J wanted me to take Mirapex at a low dose and if does not work I should ALSO take Neurontin!

Well, that was the first time I heard that, but perhaps I had not been listening very well. If you remember I had terrible withdrawal symptoms (vertigo) when I switched from Neurontin to Mirapex. I should have done it gradually but how do you slice a capsule in half?

Then he said why do you need another dose in the morning when RLS is at night? (I just explained to him I have to take it because of augmentation, he probably did not exactly know what the word meant).

To make a long story short, he finally phoned in the increase in Mirapex but only one refill this time. He also said Dr. J. wants me to go to a neurologist and was already to make the appointment (they can be so accomodating at time especially when they want to pass you on to another doctor) when I stopped him with the news that the pain doctor already had this idea and I already have an appointment with the female partner of the neurologist he wanted to make the appointment with.

He apparently did not believe me and demanded to know the name of the doctor which I could not recall immediately but eventually let him know. He talks too much and indicated that they want her to handle all my medications from that appointment on. And judging from the tone of of all the paperwork she sent over she will be a hard taskmaster.

Now everything depends on how open-minded this lady is. I looked her up on a website. You cannot tell much by a blurry photo, but I will be surprised if she will turn out to be open minded. (This same web site also offered to send me all the dirt on this doctor (any doctor) for $7.75, - but I do not want to go that far - yet).

My present medication is MIRAPEX 0.5mg twice a day

....................................... ULTRAM 50 mg twice a day


on occasions a 0.5 mg Klonopin in the evening.

Interestingly and revealingly at that point I asked James, what is the fuss? What I am requesting is not unreasonable! He admitted that it is not, but said Dr. J. disagrees with it. Then I said, he saw me for 15 minutes at the end of which he was edging toward the door, who do you think knows what is best for me, Dr. J or me? Then he levelled me with their giant killer: Yes but he is the one with the authority to write prescriptions!

So they won this round - almost. I did get two more months of reprieve on both medications. Dr. G, the neurologist will probably want to change those to an antidepressant :wink: But I will be watching her like a hawk.
Jumpy Owl

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jan3213
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Your last visit to the Doctor

Postby jan3213 » Fri Sep 03, 2004 5:29 am

Jumpy, this is Jan

Some doctors make me so mad!!! They are so arrogant, especially when they have patients who KNOW more than the average person on the street--some doctors like to feel their "importance", when they are really intimidated by someone like you!!! I always like going to a doctor who asks you why you are there to see him, and when you explain why, he says "I'll tell you what is wrong with you!", always in a very scarcastic tone. Doctors forget we HIRE them, and, even through they ARE the experts, they are there to listen to their patients and to HELP, not to be bullies, which, I feel, many of them are!!! And, all of this happens after we often spend hours in their waiting rooms after scheduling appointments for a certain time. They, of course, don't feel that OUR time is important, Of course, emergencies do happen. However, this is a commone occurrance. They constantly overbook and have no regard for their patients' schedules!!! As I've said before, I am so lucky to have an understanding and extremely helpful and open neurologist. But, I fear, they are few and far between! I can tell he has a real empathy for his patients. Unfortunately, too many doctors do not. I wish you luck, Jumpy. I'm sorry--I'll get off of my soapbox. You can tell this is a sore point for me. I don't care for arrogant people and the older I get, the less use I have for them! Good luck, Jumpy. You deserve good care!!

Jan
No one is alone who had friends.

becat
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I'm confused

Postby becat » Fri Sep 03, 2004 5:46 am

Hi Jumpy,
You may have to fill in spaces in this post as I have a killer Miagraine, that has last far too long.

I'm confused as to why your Docs. will not give you the Mirapex.......
Is there a reason they are withholding this? My doc. seems to think it is candy and has no problems upping my dose or refilling.
Amazingly, happy to hear that I am not the only difficult person to treat out there. My doctor doesn't like me either, fine by me, I don't much like him. But, you are not asking for major class 3 pain meds. here, it's Mirapex...........just don't get it.

Sole
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Postby Sole » Fri Sep 03, 2004 2:28 pm

Jumpy,

I am surprised, because of your severe RLS, that you are only taking .5 mgs of Mirapex 2x a day. That seems somewhat low. Why is your Dr. so reluctant to increase the dosage? It seems it would be more reasonable to increase the dose of one medication than to add a second.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

jumpyowl
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Thanks ladies for your concerns!

Postby jumpyowl » Fri Sep 03, 2004 6:08 pm

I am not sure what happened but I figure I was a bit casual and independent in raising the Mirapex by myself, used up the available pills half the time and then I was out of medication by the time I called them a few minutes after hours, and I claimed emergency to get the doctor who was on call. He even bought my story, but the doctor in charge must have gotten his dander up. Still with gloved hands they were trying to get rid of me (they even sent me back my payment by voiding the check I sent them.

So they applied the same tactic the pain doctor did: they sent me to a neurologist. I told them I am already "sent."

All these have nothing to do with patient care or logic. What is the best for the patient does not really enters in their calculation. They conceive me as a potential trouble maker and they are now digging the trenches. Basically they are sending, me on to this lady neurologist who will have the control of all my medications with an iron fist.

It is not clear whether it is always better to increase the dosage when augmentation occurs. You Sole are right that I am at a low level. But also the augmentation started too early (probably because of my being on Neurontin previously). And the tactic of the algorithm of RLS treatment states that in refractory RLS, it is good to switch to or add on a different class of medication.

The guy did not explain that to me because we were too busy arguing over the pain killer. To get that I had to go to another doctor and they did not like that, it seems to be unsafe for them to have too many loose ends.

If the neurologist is of the narrowminded, controlling type I will then cancel the appointment. The trick is to learn as much as possible about her before the appointment.

I shall keep you posted. BTW I did get the increased dosage right away, but only 2 months so the neurologist can take over.

Thanks for caring :oops:
Jumpy Owl

jumpyowl
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Palpitations, Tachycardia

Postby jumpyowl » Sat Sep 04, 2004 4:04 pm

My medications:

MIRAPEX 0.5mg tablet twice a day
ULTRAM 50 mg tablet twice a day

Last late afternoon I was short of breath which did not go away. I measured the VS-t, BP normal, pulse; 236 pulse per minute.

I tried 2 beta bolckers (20 mg) 1 0.5 mg Klonopin and a couple of nitroglycerins. It gradually decreased together with the shortness of breath. The lowst pulse rate was 106 beat/minute.

Upon retiring the pulse increased to 233/min. I took 2 1mg Lorazepam.

This morning I had the follwoing:

104/66/76 supine
122/85/84 standing up

Paresthesia is under control.

I will have to figure out the cause OF OCCASIONAL TACHYCARDIA. And why it is resistant to beta blockers. :idea:
Jumpy Owl

becat
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You take care

Postby becat » Sat Sep 04, 2004 4:18 pm

Jumpy, I'm sure someone has told you, but you have to take care of yourself. We just would be lost without you. I personally like an older gentlemen with an accent, don't tell my hubby I said that.
I'm gad to hear your numbers had come down after resting, but are you resting enough?
Be careful with our dear friend.
I have no suggestions, just ((((((hugs)))))) and good thoughts your way.

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jan3213
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DITTO!!!

Postby jan3213 » Sat Sep 04, 2004 4:50 pm

Jumpy, it's Jan

As I've said before, I'M NOT BEING BOSSY, but PLEASE take care of yourself!!! I was just thinking of you this morning--and, you know how "sappy" I am--but, I think it's wonderful that someone with your background is willing to do all that you do to help people. So many people, older folks, especially (like my mother (deceased) and my mother-in-law (86)) are at the mercy of pharmecutical companies who don't care about people, and I think it's absolutely wonderful that you are using your background to help so many of us like you do!! But, you've got to take care of yourself!!! You spend endless hours, not thinking of your own health, trying to answer as many questions as you can, trying to decipher what we are trying to say. You go above and beyond!! I don't think you are appreciated enough!! I don't think I'VE APPRECIATED YOU ENOUGH!!! PLEASE TAKE CARE!!! Think of that darling grandson you were holding in the picture you sent me!! He would miss his Grandfather!! You are so special!!!

Fondly!!

Jan
No one is alone who had friends.

jumpyowl
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Thank you Jan:

Postby jumpyowl » Sat Sep 04, 2004 9:35 pm

Jan also wrote:

A neurologist is trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves and muscles. They perform exams of the nerves of the head and neck, muscle strength and movement, balance, ambulation, and reflexes; and sensations, memory, speech, language, and other cognitive abilities, as well as performing CT scams, MRI/MRAs, spinal taps, EEGs, EMG/NCV (electromyography/nerve conduction velocity tests).


Thank you Jan, this was very thoughtful of you. My remarks about them being guardians originated while I was going through the many pages they wanted me to complete. Clearly many people claim disability so they would not have to work. Thus the guradianship.

Since seemingly a lot of people visit this site, I will post an appeal next!
Jumpy Owl


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