Drs, Drs, Drs..what're we gonna do with them?

[Megs]

I'm tired. Literally and figuratively. I augmented to requip within the first month, which made my uncomfortable legs turn into my painful legs and arms 24/7.

Reading your posts, I see that many of you have the same issues, which definitely helps with the feeling of being alone with this. Though my Dr seems to have not heard of the idea of augmentation..because she just scared the heck outta me when I explained the pain is now in both arms and legs, and all day. She's now testing for lupus, my thyroid(omg why does everyone want to check and recheck the poor thyroid?), and any other autoimmune diseases she could think of 75 tests in all she said.

I've been waiting by the phone for her to call back with some horrible news for 3 days, and now I see on here that I'm probably perfectly fine(apart from the RLS ofc)

She started me on klonopin .5mg at night, but it's definitely not helping the pain or twitching. It IS helping me go to sleep earlier..1-3a instead of 5-6a but i still sleep until 11:30a and I feel groggy and blah all day.

Does anyone else have problems with short term memory? It seems like it's getting worse and worse. Like the time I spent pouring over the grocery list, checking and rechecking to make sure it had everything we needed, only to forget I HAD a list once I got to the store. So I made do..got a few things I could remember we needed..drove home only to jump out of the truck and come on into the house, forgetting there were groceries in it that promptly spoiled.

Or, even better..the time I sold our car. Man came, picked it up and paid for it about 4p, I got on the computer to tell my husband, and let him know i'd still be there at 5p to pick him up in the truck. Then I got distracted by something. Dishes maybe, who knows. As I walked by the window though, I noticed the car wasn't there. "Ah, he took the car to work today, I'll go lay down and read for a bit until he gets home." It wasn't until my daughter came in at 5:45p asking why papa wasn't home yet that I realized my goof

I try bringing these things up at the Dr, but maybe I'm not forceful enough that they're seriously impacting my life. It's funny when it's the groceries, or my poor hubby waiting patiently. It's not funny when it's at work, and I keep screwing up there.

[ViewsAskew]

No surprise that she didn't know about augmentation...many doctors do not. Mine didn't. Nor did the next three I went to. I think it took me at least 6 or 7 months to find someone who did.

No question that sleep issues affect memory and cognitive function! When you augment, life's crazy and you don't get much sleep. Without the deep sleep, especially, your brain has a hard time doing what it does while you sleep that assists in memory and cognitive function (sleep actually helps memory).

I've been screwing up at work and home for several years...I just have learned how to cover up better when I do it...that's not what you want to hear, I'm sure. And, hopefully other people will have happier endings.

[Neco]

Sounds like this doctor is just plain ignorant, or uniformed, or a combination of both.. If you've relayed memory problems like that and she didn't so much as bat an eye lash to at least try and reassure you why it was happening, etc then that's a red flag... Scaring you with all those tests is insane too..

You need to get ahole of The Mayo Algorithm for RLS, and get a copy to her ASAP to find a more suitable treatment. Most people who augment on one or more DA's, especially with painful side effects, usuall end up on opiates - though by the sounds your your doctor, good luck with that

If you feel like you are getting unsatisfactory treatment, etc always consider another doctor.. I know people have a hard time with family doctors or others they have been with for long, but always consider what you get out of the relationship.. Most people view it as betraying a friend, but just remember - Healthcare, unfortunately is a business.. If a store (doctor) treats you crappy, or doesn't satisfy your needs - you run to the competition, right? Same deal here.

Here is a link to the Mayo Algorithm for RLS, print it out, read it, highlight anything you feel is important (such as this "fictional" augmentation stuff) and get her to read it in any way you can.. If a doctor won't look at something from Mayo, 90% of the time it's a bad sign, and very telling about what kind of doctor they really are.

http://www.mayoclinicproceedings.com/co ... l.pdf+html

[Megs]

I completely understand the idea of "shopping around" for a different dr. I tried a new one a few weeks ago with even more disastrous results.

SHE told me there's nothing wrong with my legs, it's a common side effect from using the asthma nebulizer (they did get a complete health history..but didn't seem to pay attention to the dates as I haven't used the nebulizer in 15ish years). Then proceded to tell me I probably have some sort of brain tumor, or a thyroid problem and asked at least half a dozen times if I was sure I didn't smoke pot.

She also said that I was sleeping so late, and tired not because of the pain at night, but because I was depressed. Even had me fill out the little questionaire and everything :p

Luckily I called the insurance company before going along with the CT scan and found out they weren't going to pay for it. I can't afford $4800 for her to ignore everything I say.

Which is why I went back to my regular dr, who actually just called with the extremely surprising results of all those lab tests today. I and the baby!?! are apparently perfectly healthy, but as I'm now pregnant..stop taking the klonopin immediately..and we'll see you in 9 months.

Thanks for the link Zach, I'll definitely print that out and take it with me to any new drs. I wish there was a list of docs that actually believe this is real and are willing to actively work with you to try getting something accomplished, instead of the trial and error method though.

Ofc that's not what I wanted to hear Views..you're supposed to have the recipe for the magic potion that makes everything better! Though, again, I feel a LOT better knowing other people are playing the cover it up, smile and pretend you know what's going on around you game too

Thanks for the replies guys, very much appreciated

[SquirmingSusan]

Ugh. I've also had those tests, over and over and over. That was while I was shopping around for a doctor who understood augmentation, and the fact that I had developed severe leg pain after augmenting on Requip. I really need to get copies of all my medical records so that they don't keep taking 20 tubes of blood looking for something besides RLS to blame for my symptoms.

Well, at least your doctor didn't tell you to talk to your minister about it, like another new person on the forum. Doctors!!! Although asking if you're sure you don't smoke pot, is really pushing the limits. Especially since smoking pot can be quite helpful with RLS and pain.

Oh, and I DO have thyroid problems, so the doctors always blame that for all my problems and tell me that when they get my dose just right it will all go away. I may never know about that; we've been trying to get the dose right for several years now.

The last neuro I went to told me she thought that I had ADD and that's why I couldn't stay awake in the morning, and couldn't sleep at night. It couldn't be RLS and the sleep delay it causes. Idiot.

Oh gosh. Hang in there.

[ViewsAskew]

I hate to add more misery to the thread, but here goes.

Went to doc today to follow up on some other stuff and get a referral. While there, I mentioned, gee, I feel so tired and crabby and ornery, maybe could I try Wellbutrin? She says, um, I don't think so, it can cause insommnia and you don't need that, how about Prozac. Me, um, no, I want to try something that doesn't affect the RLS first; then if it doesn't work, maybe something else. She continues...

After a few more minutes of options generation and back and forth, she says, Um, I'm sending you to a psychiatrist.

Me. Silent and staring.

She. They deal with dependence and addiction and know a lot more about drug interactions that I do.

Me. Still staring.

It went on a few more minutes. I threw our Provigil, she threw back, that's why I want you to go to the psychiatrist.

I gave up. I spent THREE FREAKIN YEARS trying to find a doc closer then 60 miles who would deal with the methadone. She does...grudgingly...but she does. I just don't have it in my to go looking again.

I guess I'll just feel crappy everyday.

[SquirmingSusan]

Dependence and addiction?! That's why I just mail order the meds anymore, and if they work, tell my doctor about it. (Disclaimer here - I recommend you do not do as I do!)

I'm sitting here reading all this stuff and I'm on the edge of both hysterical crying and hysterical laughter. I don't know which to do first. I think I'll just go to sleep instead and have dreams of rounding up incompetent, arrogant doctors and beating their heads together.

I have a friend who has a whole long list of illnesses - lupus, fibromyalgia, RLS and more. She told me she just doesn't go to doctors. She "doesn't find them helpful." Oh man can I relate to that.

Hey, you can always fly out and see Dr. B. I'm actually really close to doing that, just so I can get some sleep medicine that knocks me out. (OK, truth is that I love California and want some time in the sun.) I mean the only thing that works for me to get me to sleep is Ativan, and my doctors go crazy when I ask for that. I know it's on Dr. B's list of sleep meds to try when things like Ambien or Lunesta don't work.

Want to meet me in LA and then head south for some beach time?

[ViewsAskew]

Too bad he's not in Florida...I have to fly to Florida in two months for some business.

But, you know, I might seriously think about this. It is so not the right time to be spending money I don't have because of the new business, but I have to function in the new business! I can keep living me live like it is as long as not much is required of me. I'm already pushed to my limit and it's not started yet. I work on it 7 days a week, because I only function high enough about 4-5hours a day to actually accomplish anything (though I often work about ten hours...). So, I need all 7 days just to get in close to a full work week.

Geez.

[Polar Bear]

Ann, you must have felt like jumping up and down, drumming your heels, kicking doc's desk only thing is, doc would really have felt you needed a psychiatrist.
aaaahhhh...... frustration......

[cornelia]

Ann, I feel so sorry for you. When at last you found methadon a few years ago life seemed so promising again. It is scaring to see that all meds, even methadon, eventually end up giving us problems that diminish our QoL.

I don't know, but in your case you might decide to try and order Reboxetine and, like Susan says, if it works tell your docter about it afterwards. That is, if you can afford the drug. Dr B is a good idea too of course.

Corrie

[Neco]

That sucks... I don't even have a real response..

But me... being "not me" and one of you.. would have chastised any idiot of a doctor suggesting I had "addiction" issues.

I don't know... maybe we would all get better treatment if we just went to pain/addiction clinics.. I just hope my meds do not stop working any time soon or my pittance of a sham life is over.

[ViewsAskew]

Zach, I had all the responses over the next five hours, lol. A big problem for me over the last couple of years is that the more sleep deprived I am, the less well I function cognitively. I don't make the connections I need to in order to put things together. So, some of the things she said completely went by me until later.

Susan, I'm in for California, I think. I just can't do this. It can't cost more than me paying 40 and 50 dollar copays to new doctors and specialists until I find one or more who will help.

I will eventually have to find a doctor who will treat the "whole" me. I learned something important at this meeting. While my new doc was willing to prescribe the methadone, I made an erroneous assumption about her. I assumed that because she has a grandma with RLS and was interested in it when I first met her, that she'd be like me in the same situation. Me? I'd throw myself into researching it, learning the best methods, and offering that to my client. I'd probably be a very tired doctor because I'd always be up against a new situation where I didn't know the answer, so I'd want to know and help, and I'd research and help solve it.

But, that isn't her. She is afraid of the drugs, she's afraid of going places that aren't in her knowledge base. She wants someone else to take that burden.

And I want one doctor who will treat my knee as well as my RLS as well as ensure I had my annual mammogram.

So, if Dr B can get it settled for the moment, it buys me some time. I'd go to Emory just as fast to see Dr Rye - he's a great guy. And, I'd go see Dr Allen at Mayo, too. But, California is nice and warm and I have friends not far from Dr B's place, so that works for me.

[woodsie357]

Megs, I can totally relate to your memory issues, I should post the list of short examples I've taken to my Drs appointments. And s you will see in almost every post I make, that I can't remember crap. Litterally I've forgotten to wipe before. Ok tmi tmi I know.!

I wish you the best! Sounds like your educating your Dr's thats a good thing. Keep your chin up.

Susan did we see the same Dr. I also do have thyroid problems and we have been adjusting it for quite some time now.

Oh Dr. Earley said a lot of people are being told they have adult ADD recently and that it's probably more sleep disturbance then anything.

[woodsie357]

I'm sorry I post over and over, but I have to go back and reread every thing because I forget so fast. I just found the edit button tonight YAY! I'm going to post my short list of memory malfunctions... whats a little embarassment among friends....

Memory Loss Examples


1. Couldn't remember how I met my husband.

2. Couldn't remember the design of my in-laws house, while in it. Needed to use the bathroom.

3. Entered a building for a Dr. appointment, couldn't remember what floor I was on or how I got there.

4. Couldn't remember if my parents were married or divorced. Had to call my sister and ask. I had a memory that they were divorced, but I was wrong, they are still married.

5. Got lost trying to find an address on the same street I had worked on. In a very small city I had lived in for 6 years

6. Forgot conversations completely several times. In dismay when people brought them up, no memory at all of them. Several times. Subjects like long time friend losing job. Telling someone my husband got a new job.

7. Go to the store and forget what I went there for, return frequently in same day.

8. Completely forgot hospital visits with my daughter. Staff remembered seeing me, but I had zero recollection of being there or why I would have been there.

9. Say the wrong words and don't recognize it. Family makes fun of me. "Ryan could you vacuum the lawn." "Put the soup in the toaster."

10. Moved recently couldn't remember why I was driving there 3 days prior to move. (needed to pick up husband to drive moving truck.)

11. Saw Cell Phone MD on my caller ID and freaked out that someone was calling me from jail.

12. When I take a shower I'm constantly forgetting to rinse the shampoo out of my hair, or the conditioner. I often shave one leg and forget the other. I've been known to take multiple showers in one day because I forgot more then once.

13. I answer instant messages that I send to other people because I forget that I'm the one that sent them.


I take all of my medications as prescribed ... memory permitting.



p.s. I do have to say your truck story trumps mine... as far as I can remember anyway.

I really don't mind people knowing I have a bad memory. Besides I get to meet new people every day rofl!

[Neco]

Wow... that IS scary.. I hope these were all caused by sleep deprivation and are not early symptoms of Alzheimers or another memory disorder. The fake memory of your parents, yuck..

I saw a series a while ago about people with odd problems.. One woman believe her husband is a doppleganger ("double").. One guys brains constantly makes him not recognize people. His daughter can walk by in front of him and he won't notice, can't name animals, food, etc.. Another guys brain constantly skews reality with false memories, people accusing him of stuff, arguments or events that never happened, etc.