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CaleyDog 12-07-2012 12:14 PM

MS, RLS, Convulsive Spasms
Howdy all. I'm still in the probable Dx; my neuro wants to see evidence of additional plaquing before giving me a firm Dx. No problems with that. HOWEVER, I'm having a new symptom and want to know if others have been thru this. My mother (PPMS) seems to have suffered from it; my sister (SPMS) has it to a much lesser degree.

Essentially, I'm talking about RLS (restless leg syndrome) for which I take 2 mg Ropinerole before bed. Sometimes it's right side; other nights left side and on those really special nights, it's both sides. Woooo-hoooo. (Hey, gotta maintain that sense of humor, seriously.)

Past month or so, the RLS has been much worse -- usually more on right than left, but not always. When I say worse ... I mean my leg(s) and abdominal muscles spasm in concert so I sit bolt-upright and let out a loud grunt. It also involves one or both arms. The spasms used to be only between say 10 p.m. and sun-up. And there was usually a good 15-20 minutes between spasms. Now I spasm about once a minute from roughly 4 p.m. - 10 a.m. (only a few spasm-free hours a day) and it's every night.

Ropinerole helps, but literally knocks me out. I've tried Flexeril and Diazepam to calm the muscles, but neither has worked. Only thing that helps is any kind of opiate. I take Oxy already, but need to take extra to stop spasms and I don't like playing that game.

Thoughts? Comments? Anyone? THANKS!

MSJayhawk 12-07-2012 01:03 PM

Re: MS, RLS, Convulsive Spasms
Have you been checked for Parkinson's? My mom had RLS for several years before finally finding out about her Parkinson's. Her Parkinson's neuro told her that many RLS patients become Parkinson's patients and it is a sign he uses to investigate further. While it is not 100% definite and RLS is not the same as Parkinson's, there is a statistical risk.

In addition to Parkinson's, other medical conditions which may present with RLS include iron deficiency, diabetes, end-stage kidney disease, and even pregnancy. Still, those with RLS caused or as a sign of the aforementioned medical diseases or conditions, the majority of RLS patients do not have any of the additional problems. Like with MS, the snake oil salesmen sell many wares to the RLS patients.

Have you been tested for any of the aforementioned medical conditions?

Medicines, such as antipsychotic drugs -- like aripiprazole (Abilify) and risperidone (Risperdal) -- also can cause involuntary leg movements similar to RLS.

While my mom was alive, she took Ropinerole and I know it helped her.

I hope you find your answers soon. As far as I know, RLS and MS are separate, but there exists the possibility that you could have both.It can be frustrating. When my mom used to join me to drive to the clinic, I had to stop 3-5 times during a 2 hour drive just so she could walk to get relief from her RLS. When her Parkinson's reached the late stages her RLS simply went away. :angel:

CaleyDog 12-07-2012 01:27 PM

Re: MS, RLS, Convulsive Spasms
MSJHawk... Thank you, as always, for your incredibly knowledgeable reply. Now you've posed an interesting dilemma although I trust us laypeople more then the mendacious medicine men. When I was diagnosed with the RLS 10+ years ago, that neuro (who was a nincompoop and I no longer see) told me RLS was related to Parkinson's, but I should be happy about it. She said if you have RLS you absolutely can't get Parkinson's. That always sounded suspicious.

As for the other conditions you mentioned... I'm not iron deficient. As a 56-year-old male, pregnancy seems unlikely, too. I do have insulin resistance (family riddled with diabetes) and take Metformin daily... my kidney function as of six months ago was at the low/lowest-normal range. I see a neprologist yearly as my father passed from polycystic kidney disease which has a strong inheritance factor involved. As for the meds, I do take Effexor, but not aripiprazole (Abilify) or risperidone (Risperdal).

I've just started seeing a new internist who ran a slew of tests this week; we discuss results next week. I'm beginning to wonder if my current neuro isn't correct and that we're barking up the wrong tree with the MS. On another thread you mentioned CIDP which matches my symptoms very well. But most important, the idea of looking into kidney function and/or Parkinson's gives me some great ammo to speak about with the new internist before he sends me to yet another neuro.

You, sir, are a national treasure. Thanks again.

MSJayhawk 12-07-2012 08:02 PM

Re: MS, RLS, Convulsive Spasms
No worries. If Parkinson's is suspected, you need to be evaluated by a Parkinson's Specialist, I think. My mom and i used to go to the same neurology building and her specialist was a neuro who worked with Parkinson's solely. After she could no longer make the long trip, she was seen by a general neuro, but the kept the specialist in the loop.

I think it is important to arm yourself with all the info you can. With any luck, your RLS will be just RLS or attached to something easily treated. :angel:

CaleyDog 12-08-2012 08:06 AM

Re: MS, RLS, Convulsive Spasms
Again, you're right on the money. How'd you get to be so wise? For anyone fighting a "mystery illness," the three most important things may be: 1) knowledge; 2) trying to keep stress at manageable levels; and 3) commitment and conviction.

It's ridiculous, but we often need to know more than the doctors. We need to keep self-doubt at bay.... We know our bodies better than anyone else and if we don't keep pushing, we'll get pushed aside -- often labeled a hypochondriac. And we need to advocate for ourselves. The system is designed to handle only illnesses that are easily diagnosed and that respond to expensive therapies. Only a handful of doctors ... true healers ... are willing to work with a patient for years chasing down some phantom that pops up in one guise, goes away, t hen comes back looking like something else, only to disappear and then reappear as something different still.

I'm hopping on the RLS/Parkinson's concept next week in hopes of getting a definitive, quick (less than a year) "yes" or "no" answer. It also occurs to me that there are other conditions so unrelated that cause weird symptoms and are difficult to diagnose. In college, a roommate had Tourette's. He didn't bark, curse or do any of the other outrageous things people typically associate with Tourette's. However, he had a god-awful "tic" in his throat. Sounded like he was choking to death every two minutes. Took him YEARS to finally have it diagnosed and be put on medication that provided relief. Just keep on pluggin' away!

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