Rant - be forewarned

[chuas2]

I'm changing doctors (I'm sure none of you have experienced this ). I tell him...

"I have back pain, sciatica, bunions, arthritis...AND WED that manifests in my left arm and side."
"What's that?"
"Willis-Ekbom Disease, also known as Restless Legs Syndrome."
"In your ARM??"
"Yes."
"It's called Restless LEGS, NOT Restless ARMS."
"Yeah, I know what it's called, but I experience it in my arm."
"That's not possible...I've never heard of that."
"Well, you're hearing it now."
"And there have been published studies about Restless Arms? I've never read anything about it."
"Well, if you haven't, then you're not very well educated...at least on the subject of RLS aka WED."
"And you know you have this...this...how?"
"I've done research, and I had RLS in my LEGS as a child."
"So a neurologist hasn't diagnosed you with Restless Legs of the Arms."
"No."
"So you're self-diagnosed."
"I'm self-diagnosed, because doctors all blew me off, like you're doing now."
"I'm not blowing you off, I've just never heard of this...it sounds pretty farfetched. And you want opiates for this self-diagnosed non-existent thing?"

Ok, I'm done now.

[ViewsAskew]

Yeah.

Honestly? After a few similar visits, I wouldn't go to ANY new doc without a copy of Clinical Management of Restless Legs Syndrome (now I carry the second edition). I'd just haul out the book, turn to the page, and point.

[Polar Bear]

Ah..... I don't go to any medical appointment without my book. If the appointment is not about WED I still have the book in my bag just in case we end up getting around to the Wed in some roundabout fashion. Post Its and numberous pencil notations mark various sections/paragraphs etc. etc.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Second Edition. It can be found on Amazon.

[Rustsmith]

If only this was an isolated case. Unfortunately, most of us have similar experiences.

In my case, it was a neurologist and a discussion about changing my migraine medication to gabapentin so that it would also be effective for my WED. The conversation went something like:
"I will give you a prescription for gabapentin for your migraines, but it won't do anything for your RLS."
"If it won't do anything for my RLS, why did the FDA just approve the use of Horizant, a form of gabapentin, for the treatment of RLS?" (Asked nicely as a question, not an accusing statement)
"Well ... obviously you know more about this than do", at which point she got up and walked out of the room.

At that point, I realized I needed another doctor and fired her as my neuro for the treatment of both my migraines and my WED.

[Joanie60]

Wow, Steve. Just wow. Scary.....

[ViewsAskew]

I imagine a bunch of us could write stories here. This site is littered with such things, and it as so sad.

chuas2 - I should have said this before - I was too mad I think. I truly hope there is a better outcome in your future. None of us needs or deserves what you went through.

[chuas2]

Hi everyone, and thank you.

I now have a printout from this site to take to my next appt (if I decide to keep it). I shoulda thought of that.

Not sure why some people go into medicine. It certainly isn't because they want to help people. Must be so that they can put M.D. after their name and have everyone kowtow to them. I've run into more condescending, arrogant, a_ _ holes who think they know more about their patient's symptoms than the patient does.

I'm only having to do this because my former pain medicine clinic said "We no longer accept your insurance...And you aren't permitted to self-pay because you have insurance...Which we don't accept." I was "like what?" I felt like I was in a bad Marx Brothers movie.

Argh. Frustrated/resigned/angry/tired/still restless (in the arm).
Kris

[Joanie60]

Please don't give up Kris!! Keep searching for a doctor who will work with you....there are some out there and I hope you find one soon. I also have symptoms from head to toe (including, sometimes, my mouth??? It randomly start twitching like my arms/legs haha).

We are all rooting for you...

[Polar Bear]

Joanie --- your mouth ?? How awful

[Joanie60]

It's just a little twitchy if I don't move it around. Just as I'm dropping off to sleep. But same sensation as my arms and legs

[Rustsmith]

Kris - I want to second Joanie's comment about not giving up. Many of us have gone through several doctors before we found that one savior who either is very knowledgeable about WED or who is willing to learn and work with us to find a treatment that works. Don't give up, keep looking and try to educate each doctor that you try (if they are not already a recognized expert).

[chuas2]

Joanie60, Rustsmith, Ann, everyone. I'm not giving up. I can't. I downright REFUSE to suffer not only the effects, but the anticipatory anxiety accompanying this little known, under-funded, "figment of my imagination."

There are a lot of things in my life that are hard, painful, difficult, but I can live with most of 'em. WED? Can't.

I've requested cremation (partly because of a fear of being in a tight enclosed space where I can't get up and move around lol!). But I figure even if I'm in an urn, that'll be jumping about on a wall of ashes shelf!

[Orrel]

Like you I am having difficulty in finding a specialist who knows how to treat RLS.
I am seriously contemplating seeing Dr.Buchfuhrer or Dr.Earley. This will be at my own
personal expense and will involve considerable travel. We can't control whether or not we
have RLS nor the effectiveness of the various meds, but we can control whom we see.
Seeing someone like Dr.B or Dr.E. will give you the assurance that you are in excellent hands.
and remove the anxiety of wondering whether Dr. Whoever really "gets" RLS.

[Joanie60]

Chaus2 & Orrel

I believe I read that we can donate our brains to the cause (after death hopefully...WED has occupied enough of my brain during this lifetime!!). I plan to donate as many organs as possible before cremation but it would be awesome if my brain could be used for WED research as well. I never thought of the idea of being cramped up in an enclosed space after death but it immediately set my teeth on edge and my legs a-jumpin hahahaha.

I first met the Hopkins docs through clinical trials. If there is any possibility that you survive 10 days without your meds, there is a trial going on right now with Dr Allen and Dr Earley. (I participated in two earlier ones, cannot fathom 10 days drug free so I am not doing the current one). I haven't met Dr. Earley but Dr Allen and his folks are incredible and if there is ANY way you can afford it, I doubt you would be disappointed.

For brain tissue donation:
From Hopkins page: http://www.hopkinsmedicine.org/neurolog ... auses.html

Through the generous efforts of RLS Foundation, a Brain Bank has been set up to collect brains from RLS patients who wish to donate their brains after they die. Using tissues from those donated brains, studies have shown markedly diminished iron and iron storage protein in the substantia nigra consistent with iron insufficiency in the dopamine cells. Overall the studies support the concept of iron dysregulation in brains of patients with RLS, particularly in dopamine-producing cells.

For Clinical Trial at Hopkins:
https://clinicaltrials.gov/ct2/show/NCT ... and&rank=2

(I have no idea if they have travel allowance to aid you in participation but I understand you will be tapered off your current regime under doctor's supervision, go 10 days drug free, then participate in what I believe is a three day inpatient trial)

[Polar Bear]

Two things at this very moment are making me feel very uncomfortable.
1. The thought of being in a cramped space after cremation - as mentioned up thread.
2. The thought of going 10 days without medication, as mentioned.

Well done to anyone who can do No. 2 for the purposes of trials that will help all WED sufferers.