Hello @pcka,

Welcome to Connect. Battling restless leg syndrome for 30 years sounds really frustrating, I am sorry to hear that.

We have a lot of conversations here on Connect about Stem Cell therapy, but most are centered around joints or Bone Marrow Transplant for treating hematological diseases. However, as a result, I have done my own research in to what Mayo Clinic is doing with Stem Cells. The following information is what I found out regarding a consultation service number Mayo Clinic has as it pertains to Stem Cell therapies:

Regenerative Medicine Consult Service Process

Transplant Call-in Center
844-276-2003

What to expect when you call the number:

– An employee will answer and ask the nature of why you are calling
– Say you are interested to stem cells for osteoarthritis or whichever joint ails you
– The employee will funnel your call to the appropriate coordinators from there
– For joint issues, you will be transferred to PMR (Physical Medicine & Rehabilitation)
– Appointment coordinators will ask more specific questions (inclusion and exclusion criteria)
– If you meet the criteria:
– You will be asked to send in your records and a doctor will look at it in a case-by-case basis

Important Notes to be Aware of:
– PMR is a busy practice, so wait times may exist but answers will be given
– If a treatment exists in the clinic for a diagnosis (i.e. Leukemia) stem cells are not offered
– Price is out of pocket
– Types of stem cell treatments offered are Bone marrow aspirate concentrate (BMAC) injections and Platelet rich plasma (PRP) injections. You can find more specific information on these types of injections here, http://mayocl.in/2AUIoAn.

If you'd like, you can feel free to call the number above and ask them the specific questions you have and they will be much better suited to answer your questions than I ever could be. If you don't mind me asking as my own knowledge is limited about restless leg syndrome, are Parkinson's pills regularly prescribed for this condition? If it is not too personal, are you also battling Parkinson's?

@pcka

Welcome to Connect. I don't have a diagnosis of restless leg, but I've always acted out my dreams, and my wife was about to kick me out of our bed. Twelve years ago, I started taking Klonopin for anxiety, and it has helped that, but another effect has been to stop my legs from kicking out at night. I may or may not still need it for anxiety, but my wife, though she thinks I'm on too many meds, is against me stopping Klonopin, and the doctor concurs. Just an observation. I can't imagine living with the syndrome for 30 years. As with any chronic medical condition, it surely must be wearing.

I'm glad you found the group, and I hope that you find something that will give you relief.

Jim

Hi, @pcka -- just wanted to touch base and see how you are doing and how it's going with the restless legs syndrome? You'd mentioned your gabapentin and Parkinson's pills weren't working for this and sounded like you were interested in STEM cell therapy.

Wondering if you did try the stem cells?

I tried Neupro which is a transdermal patch. It does have some side effects like headaches, dizziness, and some nausea, symptoms that became milder after 1-2 weeks. It’s a rather expensive drug, even with insurance, but I’ve slept all night long more nights than not for the first time in 10 years. I was only getting 1 - 2 hours of sleep per night. Again, everyone is different, but it’s worth a try. I was at the point where I would do anything to get some sleep. I wasn’t able to drive since I would drop to sleep involuntarily, and I was unable to stay the night away from home at all Since I would need to walk almost all night long, and sometimes I even would run through the house, as crazy as it sounds, to try to get rid of the symptoms since they intensified through the night

@pcka: I have heard of people using stem cell for treatment of shoulder & back pain. In both cases they went somewhere in CO but I don’t remember where. Those two people swear by results, but pain dr and Ortho surgeon advised it was expensive & largely ineffective. Difficult to know what to believe. I sympathize with you though..,.I’ve about run through the gamut of drugs available. Right now I’m taking Neupro but it’s effectiveness is wearing off & it has side effects that aren’t great: dizziness, headaches, memory impairment & they’re pretty expensive. I know I offer no solutions, but I hope you get some relief and soon. It is life-altering isn’t it?

@pcka I also have had restless leg for over 30 yr and I also take parkinson med< Pramipexol 2 mg every evening. The Pramipexol helped when I first started it and still helps some but not as much as it did in the beginning. Some nights I have RLS so bad that I want to scream and the only relief I can get is to walk but as soon as I sit, it starts again. When my feet and legs are already on fire from neuropathy and the RLS sits in, I just want to die, its bad, really bad.

In terms of your pain, have your looked into Kratom? I am actually getting off of Hydromophone as it has become totally ineffective for my pain anymore, at its height the morphine was covering maybe 20-25% of the pain. Kratom covers for me 70% and is far safer than opioids. Its fairly inexpensive, doesn't have a high, isn't an opioid, is a close relative to the coffee plant and works when literally nothing works for my pain and I have tried Gabapentin, Pregabalin, Lyrica, Tylonal 3s, Codeine Contin, Amitriptyline, Cannabis.

Damn I just noticed im replying to a comment from 2017, hopefully you havent been in utter pain this entire time!