With my HMO, my choices were to ask my primary care provider to re-refer me to neurology for a 2nd opinion, or ask the neurologist himself for a referral to another doctor. Since the neuro I've been seeing has been condescending, dismissive and rude (and unhelpful), I decided to ask my PCP. Hopefully she will be cool with this. I have a brand new PCP, she seems great but I don't know her very well.
The good news is, my ferritin is 54! It only took 6 months of supplements, but YAY! The time between flare-ups is getting longer, too. I still have the problem that when I do have the symptoms, my choice is to not sleep, and miss work in the morning, or take Klonopin, and miss work in the morning. My current neurologist does not feel that RLS/WED is an indication for giving me a day off work, so I'm out of sick time and getting into (mild) trouble at work. Grrr. I also need an option other than Klonopin, as it makes me feel really awful the next day. I'm writing this in a "klonopin haze" today
If my PCP isn't comfortable re-referring me, then I will have to talk to the neurologist. He is an ****, but if he refuses to give me a 2nd opinion I can report him to the HMO and possibly the medical board. I'm going to try my best to get the care I need within the HMO, but if that proves impossible I will pay out of pocket. Sigh.
Hurrah, after wading through red tape it turned out there was an easier way! I see my new doctor next Thursday. And not a moment too soon. The Klonopin I took last night made me so drowsy today I had to call in sick last minute because I felt drunk. Then I got hysterical because I thought I would get in trouble at work. I don't think Klonopin is my friend anymore My psychiatrist recommended a neurologist that he says is quite good, and responsive, and not a jerk.
Andrea,
That's swell you found a new neuro and can see him so quickly! I shall tell you what happened to me and my legs when I was getting chemo the other day. They put Benadryl in it, and at one point in the 12 weekly ones I get, my legs fired up from the antihistimne, but luckily I fell asleep quickly. I must have gotten out of sequence with my timing on my RLS drugs. So, from then on, I made SURE I had my RLS meds before I went in for my infusions, and as a result I didn't have a problem again. I take Tylenol-Codeine #3 and it prevents them from wiggling and seizing.
This last time, unfortunately, I ran out of time on the way over there, and grabbed my pills with me, thinking I could take it after I got in the chemo chair, but that was too late. My legs got to going, ohhhhhhh, it got so bad I thought I was going to have to get up and walk around. Finally sleep took over or the pill did, but they still hurt when I got done, on account of that never-ending tremendous electrical voltage and huge surge of muscle tightening that is SO unbearable with RLS. My legs ached for the rest of the day, just from that half-hour or so of my legs yanking around. I've never been able to completely describe how bad it is. Maybe something like having diarrhea and no bathroom nearby, and then on top of that someone is kicking you in the gut? Nope, it's worse somehow.
I normally take my medicines four times a day, spaced fairly evenly apart, and so my legs are good unless they get strained for some reason. Like this chemo throws a different power into my body, and unless I've had my Codeine within a couple hours before infusion, they'll goof up. And now I know if I take it right before the chemo, I ain't got a chance in the world to stop it. So, hope the new doc will work with you on your meds until you get something or some combination that keeps it under control.
And you know what, it is our psychs that save us, mine has several times over the years in a real big way. My busted up back from an old car wreck got to hurting SO bad as I got older, I'm disabled now, I complained to my neuro, I complained to a new orthopedist, and MY PSYCH is the only one who had a solution when I cried to her about nobody caring about me. She put me on a drug that made the pain in one of my places disappear overnight, and THEN the neuro took it over. Heck, he was even reluctant to add a pill to the two I was taking when I asked one time. Sigh. And he's the one who was visibly shaken when saw the pictures of my back injury!
Some docs just will not listen, or I guess they think we're making it up, or the Feds have put a vise grip on them from the "drug war," I surely do not know. But our psychs actually KNOW us, they know our tears are real and we ain't got nothing to gain by crying to them, so they are willing to help us out of the blue. I'm glad yours helped you, too. Oh, let this new doc be helpful to you, child, I think he will be, sounds like his rep is good.
GG
"It's not how old you are; it's how awful you feel."
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.
My psychiatrist recommended a neurologist that he says is quite good, and responsive, and not a jerk.