need new neurologist

[Irmajs]

Hi,

I was diagnosed with RLS about 12 yrs ago, weeks after my first knee replacement. I have read that others also didn’t have it until after hip and knee surgery. I’ve been put on all the old dopamine drugs in the past which all resulted in augmentation. Going through 3 neurologists, I finally had found a neurologist that knew what he was talking about. For a long time I was able to control my RLS with CBD/THC combo, until it didn’t. He started me on 50 mg if Tramadol to take with my CBD/thc. It was working pretty well until I had my second knee replacement last month. My RLS went out of control and would only attack my operated on knee. I called my neurologists office and found out he up and left! I tried to make an appointment with his replacement and can’t see her until next March. I didn’t make an appointment as it is just too far away. Also I have PTSD. just from thinking about going to a new dr. I’m sure many understand. One dr was a motion specialist and only would give the old dopamine drugs!

I live in Arizona, US. I know this might be a long shot, but if anyone know of a neurologist here that is versed on RLS, I would love the name. I’m in the Phx area, but willing to travel within reason. I even have been hitting my husband’s left over Gabapentin when it’s unbearable and add it to everything else I take, but they are only 100 mg and need at least 2-3 just to get some sleep. They are almost gone. About 10 yrs ago I tried a sample of Graise and was taking 900 mg. It worked but is cost prohibitive as insurance won’t cover it.

Sorry for running on. Basically what I need now is a good neurologist with RLS knowledge and I’m hoping someone hear might know of one. I am intrigued by some of the newer meds people are successful taking. But I am not sure if they are available in the US.

Thank you for your help.

[SueJohnson]

Dr Moguel-Cobos at Barrow Neurological Institute in Phoenix, Arizona. Will prescribe methadone . Recommended by Wickone.

[Irmajs in reply to SueJohnson]

Thank you! I don’t think my insurance covers Barrows, but I will find out!

[SueJohnson in reply to Irmajs]

If not I have some other names.

[MrCrow]

I wonder why knee replacement causes RLS which is otherwise often understood to be a brain and CNS disorder related to dopamine dysregulation.

Could it be that some of the nerves were pinched or constricted during the surgery and that's what's causing your symptoms?

[Irmajs in reply to MrCrow]

No. I definitely have been diagnosed with RLS. I started getting it after my left knee surgery 12 yrs ago and have had it ever since. If I don’t take anything at all my legs go wild with muscle tightening creeping up into my chest and arms making it hard to breathe. I did fine on ropinirole for 2 yrs until I augmented. It’s my right knee replaced now. I think the RLS is drawn to that leg, even with meds, now because it’s trying to heal.

[Zenawarrior73 in reply to MrCrow]

I agree with this theory mine started after hip surgery and I’ve been having ongoing problems with muscular tightness different injuries since surgery …. However the opioids I was on post surgery then withdrawal could also have impacted it maybe??

[vikkitennis]

Call David Shprecher DO, at the Cleo Roberts Memory and Movement Disorder Center in Sun City, AZ. Phone is 623-832-6530. I was his patient for two years until I was able to see a neurologist at Mayo. He is with Banner, at Sun Health Research Institute.

[Irmajs in reply to vikkitennis]

Thank you!