Sad, weary, and let down

For everything and anything else not covered in the other WED/RLS sections.
ViewsAskew
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Sad, weary, and let down

Postby ViewsAskew » Mon Dec 06, 2004 11:23 pm

I'm so sad right now I could cry. In fact, as I type this, I might. I had such high hopes for the new neuro. I waited for months to get the appointment, all the while just trying different drug combos on my own.

I say here today and it was less than stellar. She met with me for an hour, which you would think would be good. But she asked lots of questions and didn't listen to my answers. She questioned why I would want off of a drug that caused side effects that I had to take other drugs to counteract. I had said my sleep varied from 3 to 6 hours most nights (up from zero) as long as I took the drug that causes the side effects. Later I said I was having trouble concentrating on my work. She looked at my quizzically and said, "even with the amount of sleep you get?" as if she thought that an average of 4.5 hours a night was enough. I told her my partner was seeing PLMs and at another point she indicated that since I was sleeping at night I should be rested.

But, truth be told, none of that was the worst. The worst was when she referred me to a sleep doctor, without offering any assistance. I was too stunned to talk. I left, came home, and looked up the doctor's name she referred me to. Of course, this person is not in my insurance plan. And I have no idea of how long I'll have to wait to see her (or someone else that is in my plan). I've waited 3 months to see a specialist in RLS who is sending me to a sleep doctor. She didn't even ask me if I had enough medication or if we could change it for now until I see the next person.

Of course, I didn't think of any of this at the time. I just nodded meekly and walked out. I was sort of stunned and not thinking. I will call her office tomorrow and see if I can get a scrip for something. I will have to spend time finding a place to have the sleep study she wants and finding adocotr for whom I can get a referral. I could call her and push her to give treatment, but what's the point?

Well, glad I have someplace I can share this (vent is more like it!). I appreciate that there's a good likelihood some of you will understand how I feel. Now I think I'm ready to go cry. Tomorrow I can pick up the pieces and do what I have to.

Ann

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don't give up!

Postby oaklander » Tue Dec 07, 2004 1:04 am

Dear Ann:
I read your email and know exactly how you feel. I've spent years having doctors not listen to me. Even before RLS, I had years of unrelated problems I'd documented, and doctors didn't know what to do with me. Finally I insisted on switching doctors this year. The new doc immediately ran tests and rushed me in to surgery. (Unrelated to RLS.) For RLS, I read books, went online, and armed myself with facts, med suggestions, etc., and finally taught my doctor what I have. I don't know what you feel comfortable doing, but I notice that most of us who post idea are sleep deprived and feel hopeless because we're exhausted. I hope you don't give up with that doctor. Sometimes I think doctors have really rough days, too, and don't come across as compassionate when perhaps they might really care. You might want to make a second appointment and try again. Of course you're right; you're not getting enough sleep. My new doc said to me recently, "Have you had doctors over the years suggest you go see a counselor?" My jaw almost dropped. She gets it, because yes, I have had doctors say that to me, while my problems went undetected. Good luck, and don't give up!

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(((((((((((ANN)))))))))))

Postby becat » Tue Dec 07, 2004 2:08 am

Awww, Ann I wish I was there to give you a hug. I have noticed lately that it seems to be building on you. This appt. was so important. No one could have educated more and been more involved in your own research than you. I know where your and have walked out of an office just like you did. Dazed and confused. To feel ignored is the worst and to leave without hope is worth a good cry.
I'd be interested to know who said this Doc was in the know about RLS, doesn't sound like it to me. And you did right by yourself to stop medication YOU felt was not in your best interest. I love the line "acceptable side effects......" Acceptable to whom? Don't let her make you feel worse than you do. Breath, Breath again, and then call that ditzo and make her help you with something....at least until you find someone that will help. If you have to tell the nurse or her asst. that you were so fogged and dissappointed that you forgot to ask for the medication before you left. If you can make a connection to the one you talk to, they might push in your favor. I doubt you'll speak to the doctor, if you do, I'd tell her that what you said here tonight.
Oaklander, your right Doctors are humans and have the same bad days we do. I sometimes forget that myself. However, an hour of not listening is too much. I'm often more brave here, than I am in the office when I go. But I'm changing. I'm learning how to stop the visit and redirect things myself. With RLS being a progressive and chronic disorder, it's so important to feel that your doctor is a partner, not a figure head to treatment. It's just no ok anymore for them to ignore an educated CLIENT.
Ann, you have the smile and charm of an angel. You call them and keep calling them until they help you with something. I'm begining to think we have to be our own Gatekeepers, not them.
Darlin', I'm with ya and you know I send my love. Tons of ((((((((cyber hugs))))) and muscle if you need any.
Have a good cry, Breath, get pissed off........and go get them rats!

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Postby ViewsAskew » Tue Dec 07, 2004 2:48 am

Thanks Becat for the care and compassion for me. I will call tomorrow and see if I can get some interim meds. I've already called my primary care. The problem is that the specialist for RLS DOESN"T WANT TO SEE ME, not that I won't see her or give her a chance! She is listed on this website as a specialist, yet when I saw her about her supposed specialty (with a referral from my primary care), she REFERRED ME TO SOMEONE ELSE!!!! What the heck? BTW, anyone in Chicago, don't choose Kompoliti to go see. There seems to be no point as she doesn't appear to treat RLS patients. Oh, BTW, the cost to my insurance company for this visit was almost $700 to get no care and a referral to somone else that I could have gotten from my primary care.

Now, of course, I could have misunderstood something here. But I can't figure out why a doctor gives you a referral to another doctor if the first doctor plans on treating you. And since she didn't mention making another appointment, I guess I've been fired as a patient!

Ann

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jan3213
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OH ANN..............

Postby jan3213 » Tue Dec 07, 2004 3:02 am

It's Jan

And, I know just how you feel!! I had a similar experience not even a month ago with my neuro who diagnosed me with fibro, THEN after returning for a followup appt. a month later, proceeded to tell me that he did not know how to treat fibro, that "I was thinking too much about it", and that he thought I was "just depressed". This man has been my neuro for RLS for 15 years and I really thought, AND HAVE OFTEN SAID ON THIS SITE, that he was a caring, compassionate doctor who was always willing to LISTEN to me! However, that day, after I asked a few pertinent questions about fibro, he dismissed me, and for whatever reason, made another appointment the end January. I have chosen to educate myself about fibro, just as I have about RLS, and I think, for the first time, I saw the side of my neuro that doesn't want his patient to "know" too much! (Not that I'm an expert, by any means!) And, I've been clinically depressed, and BELIEVE ME, I am not depressed now. Even though he told me me didn't know how to treat fibro, he didn't feel the need to refer me to a rheumotologist. I, like you Ann, was so stunned and deflated, I didn't even think to ask him to do so. I'm just relaying my experience so you'll know you are definitely not alone. Like Becat said, and like I'm sure you will do, FIGHT, GET MAD AND REFUSE TO TAKE IT!! I was so mad, I called Becat right after my appointment. I just had to talk to someone who knew and understood how I felt!!! Oaklander, I know doctors are busy and are only human, and I truly appreciate how hard they work. However, there are doctors who are sometimes indifferent. My husband pointed out something interesting to me that very evening. He said that this was the first time he has not gone to an appointment with me. He always goes in with me to talk to my neuro. This time, it was just me--a woman--all by myself without my husband. My hubby said that he doubted that my neuro would have acted that way if he was with me. Somehow, I'm afraid he's right.

Good luck Ann. I'm with you and I understand exactly how you feel!! GO GET 'EM!!!

Jan
No one is alone who had friends.

ViewsAskew
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Postby ViewsAskew » Tue Dec 07, 2004 3:34 am

Thanks, Jan. My go-get-'em in this case will apply to a DIFFERENT doctor. I will not try to get treatment from someone who does not want to treat me. I WILL find someone who will, though :twisted: .

Ann

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Hi, Ann:

Postby jumpyowl » Tue Dec 07, 2004 3:48 am

I do not like your neuro any better than you. Aside from that a good sleep study run by someone who understands all aspects of polysomnography can be very useful. It could prove to your neuro how little restful sleep you get at night. E.g. It could for example show the presence of a severe PLMD of which you are unaware of.

Let us know what happens next?
Jumpy Owl

Guest

Postby Guest » Wed Dec 08, 2004 8:08 pm

Ruby, here (just in case it logs me on as "guest" again). I am so sorry you are having such problems. Doctors can be great or useless and sometimes even dangerous. You are right to go to another doc. This one doesn't know anything about RLS. I went to one of the "specialists" listed in our directory also and did not get any help. Took two sleep studies (where I didn't sleep) and was told to lose weight and come back in 6 months. He never asked me about anything related to RLS other than lack of sleep. When I asked him about my legs, he told me to try someone else. So Ann, most of us have been there. 'Nuff said on that topic. I met you in Long Beach and you are such a strong and intelligent person. I feel that since we started talking on this board and arming ourselves with knowledge, many, many time we have more information about RLS than the doctors we go to. That is threatening. Also threatening is that if a med or suggestion from the doctor does not immediately bring relief, they don't know what to do so they brush us off. Doctors are human and need to remember that. If they can't or won't help us, move on. Please, please remember that we are with you on this and any feelings you need to vent will be met with understanding. I just can't imagine life without all of you. Keep us posted and hang in there.

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Day 2 and 3

Postby ViewsAskew » Thu Dec 09, 2004 12:46 am

Well, on Day 2, I called her nurse and left a message saying I needed meds. I called my GP and left a message, but she'd left for the day; I asked her to call me. I called the sleep clinic and left a message (amazing that not one of the three was available) to set up the sleep study (already had one, but it's been a few years; this is another topic).

Day 3, I went to my studio and made stained glass all day. Two clients were supposed to have work for me yesterday so I waited at home all day and neither came through. So I decide to hell with them today and made cute ornaments. Glad I did, because not only did the clients not call or forward the info I need to move forward on the projects, but the nurse, the GP, not the sleep clinic returned my calls.

So, guess what I'll do tomorrow morning? Day 4, round 2 of phone calls (and probably round 2 of messages). I am SO grateful that I am self-employed and can work my schedule around this stuff. I can't imagine how difficult it would be if I had to do this on my lunch break. For those of you who do, my heart goes out to you.

Ann

PS, hi Ruby. Thanks for the encouragement and kind words.

PeteB
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Such a needless struggle

Postby PeteB » Thu Dec 09, 2004 10:25 am

Hi Ann and all,

Pete here (incase it 'guests' me).

Reading your original post and the replies to it had me nodding my head in bisbelief. Of course I believe what you and others have said, but I mean that I find it unbelievable that these (so called) professional medical people dismiss your clearly stated problems with sleeping.

Recently, here in the UK, I needed to see my Dr. about a couple of matters, one of which was how the RLS was affecting my sleep. She agreed that there was no present cure for RLS and said that it is vital that I get sleep as otherwise over a period of time ones ability to function diminishes and, could even make the RLS worse. She therefore suggested that I take a sleeping tablet once every few nights to catch up on sleep. This was followed up with an earnest request that I come back if this did not help. She prescribed me Tamazepam.

Since then I've taken the Tamazepam mostly at the weekends or, if I've had some bad nights, maybe once during the week.

Another Dr. I am seeing is currently researching the latest on RLS and will tell me all when I see her next week.

I feel that they're listening to me and are doing their best to help me. It's therefore very shocking for me to read your story and makes me feel quite sorry in a way. And also frightened.

To cap it all, you mentioned that there was a $700 bill attached to the 'consultation'. How on earth that is justified I cannot imagine.

My heart goes out to you and all who suffer at the hands of inconsiderate and dismissive practitioners. They bring shame upon their profession.

tcfn
P

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Day 4

Postby ViewsAskew » Fri Dec 10, 2004 2:12 am

If I had posted this at 11:15 AM, it would be a very different post. In fact, I started to post and had some of it written when I got sidetracked. Coincidences, serendipity. . .

I had not heard from my doctor, the new neuro, or the sleep center as of yesterday evening. This morning the sleep center called and left a message while I was sleeping in (after an evening and early morning of nausea from codeine--different story). When I awoke, I called them immediately. After a 15 minute call, I had no appointment however. The sleep center is part of the hospital that is part of my insurance plan. However, NONE of the doctors on staff are part of my insurance plan and the sleep center requires I meet with one of them BEFORE they will do the study, even though my neurologist rx'd it.

I still had nausea from the codeine and a killer headache. I started typing a message here but decided to call my PC first. Turns out she had a cancellation at 12:15. It was 11:30. I showered and ran over.

First thing she said was, "Did you get my message?" She had called me back on Monday, but got an answering machine. Someone else's. The nurse that took the message transposed my phone number. She said that the sleep study and doctor issue is not a problem. The hospital is required to cover the cost of the doctor at the sleep center since the center is part of the hospital and that's where my insurance is through. Thank God. Once less battle I have to fight. She said she'd have the papers by Monday.

She gave me a scrip to cover meds for awhile, too. During this, she mentioned that I wasn't anemic. I started, because I'd forgotten she'd checked. I indicated that blood iron wasn't an indicator, that ferritin was. She told me my blood iron was 13.8 (nice and high) and that my ferritin was within the level, since 10 was the low end. I knew at that moment that mine was low for an RLSer. I asked her what it was: 23. Of course, she didn't know that is should be 50. I told her that 50 was recommended for those with RLS. She sort of shrugged and told me that it wouldn't hurt me if I wanted to take it. Sort of humoring me :lol: . Well, she can humor me all she wants!

I feel like things out less out of control now. I have something to work on: getting that ferritin up. I have meds to last until I get the sleep study. I have my doctor ensuring I get the sleep study and to see the sleep specialist. I may not have the brand new neuro that I wanted (that would totally get RLS and be in my corner), but this is enough for now.

So, off I go to find some iron. And some vitamin C that doesn't have ascorbic or citric acid in it.

Ann

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Hello, Ann:

Postby jumpyowl » Fri Dec 10, 2004 4:30 am

I am glad that things are shaping up for you slowly but hopefully surely.

It almost seem a rule rather than exception that sooner or later we will all have our crosses to bear.

Unless you were teasing (you know there is a chemist in me burried deep).... Just want to clarify it that ascorbic acid = vitamin C, so good luck finding that vitamin without the acid :)

I had my own surprise this week: Since I had trouble concentrating at home I came to visit my oldest son with my lap top - and stayed! I even got some material together for my lady neuro and delivered it to her office. The girls in the outer office thought I was an old drug rep.

I renewed my acquaintance with the nurse who seems to be nice and gave her some stuff for her boss. The neuro is an expert on migraines it seems.

Then today I called a psychiatrist whom I knew and managed to get an appointment. I hoped to get some advice about some family matters.
Much to my surprise he diagnosed me with a major depression and prescribed an antidepressant, not Wellbutrin, and he justified it, so I am trying Remeron.

Is this not a switch? :roll: After lecturing against antidepressants, the fate forces me to experiment with them. Nothing like first hand experience!

He immediately dictated a letter to my gatekeeper and my neuro! that I have been diagnosed etc. But he let me correct his letter when I asked him to leave some of the stuff out. He wants to see me between 1 - 2 weeks which means he is serious.

Well, perhaps now I really find out what is wrong with me. RLS of course came back with a vengeance last night and today with nice toe cramps!

The pharmacy of course did not have it so I will start tomorrow. Will report possibly in a new thread. I just cannot leave you gals and guys!

Ann, one last question, are you the helping angel who under different nome de plume has been "pushing" the survey on yahoo? If so, I thank you again.

The soon anti-depressed Jumpy! :?

Sorry Ann, I diverged from ascorbiuc acid because it really surprised me
Jumpy Owl

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Postby ViewsAskew » Fri Dec 10, 2004 6:09 am

Yep, I'm the one and the same angel. Glad to help. Hope you've gotten some responses from it.

Jumpy, I didn't clearly explain my problem about the vitamin C. First, here's my problem. Years ago, during the winter, I would eat an orange and within 20 minutes I'd start itching around my mouth on on my chin. So, I stopped eating oranges or any other citrus for a year or so. I eventually included citrus, but rarely and it seemed fine. Then two years ago I did a food elimination diet. I was drinking more juice and the itching came back, but this time also made my hands itch. So, I stopped again. Then one day I had a can of soda; I started itching. I looked and citric acid was an ingredient. I figured it was citric acid that was the problem. 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.

But, then I read a few months ago that vitamin C we take and ascorbic acid used as a preservative usually comes from corn or citrus. I happen to also be intolerant of corn. So, maybe, I thought, it's the source of the vitamin C that is the problem. That's what I meant to say earlier - that I was going to look for C from a different source.

I found a vitamin C today that does not come from corn or citrus and is designed for allergic people. I am trying it to see if I get itchy. If not, then it's not the ascorbic acid after all, but the source. If I do, well. . . I took my first dose tonight, and no itching. Usually it occurs within 20 minutes. So my fingers are crossed.

Ann

becat
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Vitamin C

Postby becat » Fri Dec 10, 2004 6:19 am

Ann,
there is tons of Vitamin C in chile peppers and jalapenos as well.

jumpyowl
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Hello, PeteB:

Postby jumpyowl » Fri Dec 10, 2004 12:22 pm

I liked your thoughtful and well written post. I fully agree!

You may want to print this summary and give it to the doctor who is presently researching RLS. It is only two pages. Then she may want to see the original. Also call her attention to the Medical Bulletin (both found on this site.) It has almost 300 references!

_________________________________________________________
An Algorithm for the Management of RLS

After M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004


INTRODUCTION:

Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.

Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).

Severity: ranges from annoying and infrequent to distressing and daily.

Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.

Prevalence: 5-15% of population.

Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).

Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.


Classification of RLS based on severity:

The article distinguishes between three types of RLS:

Intermittent RLS

RLS that is troublesome enough to require treatment but does not necessitate require daily therapy

Daily RLS

RLS that is frequent and troublesome to necessitate daily therapy

Refractory RLS

Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:

o Inadequate initial response despite adequate doses

o Response that has become inadequate with time despite increasing doses

o Intolerable adverse effect

o Augmentation that is not controllable with additional earlier doses of the drug


TREATMENTS:


INTERMITTENT RLS

Nonpharmacological therapy

• Determine ferritin level and administer iron replacement

• Mental alerting acitivties to reduce boredom

• Abstinence from caffeine, nicotine, and alcohol

• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.


DAILY RLS

Nonpharmacological therapy

It is the same as for intermittent RLS

Medications

• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)

• Gabapentin/Neurontin (anticonvulsive)

• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram



REFRACTORY RLS

Medications

• Change to gabapentin/Neurontine from dopamine agonist

• Change to a different agonist

• Add a second agent such as gabapentin, benzodiazepine, or an opioid

• Change to high potency opioid or tramadol




ALTERNATIVE, INVESTIGATIVE, OR POTENTIAL FUTURE THERAPIES

The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.

Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..

Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.

Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.
Jumpy Owl


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