Scripps Health in San Diego

For everything and anything else not covered in the other RLS/WED sections.
stockton2malone2
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Scripps Health in San Diego

Postby stockton2malone2 » Fri May 10, 2019 8:02 pm

Has anyone been to the Scripps Clinic Viterbi Family Sleep Center in San Diego? What was your experience?

It is the closest quality care center to me in Utah, but at this point I'm skeptical they'll be able to tell me anything new. I've been through the entire treatment algorithm, and more and more it feels like it'll be a lot of effort and money for nothing.

Both my iron levels are normal. My vitamin D is normal. The rest of my CBC and my TSH are normal.
I've tried Mirapex, Ropinirole, Neupro, Lyrica, Horizant, Gabapentin, Clonazepam, Clonidine, Marijuana, Alprazalom, Keppra, Topamax, Carbidopa/Levidopa, Oxycodone, and a variety of combinations of these. Since augmenting on Mirapex, nothing has worked for more than a few weeks. I've been to several neurologists who all eventually run out of ideas and say just go back to Mirapex like that is a solution.

Also, if anyone knows a good neurologist in Utah that would also be much appreciated. There are no suggested providers in the state.

ViewsAskew
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Re: Scripps Health in San Diego

Postby ViewsAskew » Fri May 10, 2019 8:19 pm

So sorry to hear of your experience. Sure sounds as if your docs have been thorough.

Do you know what your actual ferritin level is?

How long did it take you to augment on pramipexole and how long have you been off? I ask because my experience is somewhat similar to yours - augmented and since have tried about 20 things, alone or in combination. For me, though, it is side effect issues that are the problem, not so much effectiveness. And, I have been able - after improving my ferritin to what many would consider HIGH levels - to use pramipexole for up to 6 months without augmentation (originally it was about a week). Then I stop it for a few weeks, and go back to it. Not saying this is optimal or that anyone would want to do the medication dance that I do, but it works better than anything I have tried.

Per Scripps, I have not been there. I see Dr. Buchfuhrer in the Los Angeles area and I understand that the doc at Scripps is just as qualified.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

badnights
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Re: Scripps Health in San Diego

Postby badnights » Sat May 11, 2019 5:01 am

If all your neuros eventually have said to go back to pramipexole, you haven't yet seen a doctor who actually understands how to treat WED/RLS . Go to Scripps.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stockton2malone2
Posts: 11
Joined: Fri Dec 14, 2018 3:11 pm

Re: Scripps Health in San Diego

Postby stockton2malone2 » Sat May 11, 2019 6:27 pm

ViewsAskew - I augmented after about 4 years, and it has been about a year since I've used Mirapex exclusively. I've tried low dose with other meds, but that wasn't effective, and whenever I go back on a DA it just seems to make things worse.
My ferritin was 82.
I'm pretty similar. If it wasn't for the side effects and large doses I needed, gabapentin would probably work at least reasonably well.

badnights - That is very likely true. My concern is, with everything I've tried already, are the people at Scripps going to have anything new to try?

Thank you both for your responses.

stjohnh
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Re: Scripps Health in San Diego

Postby stjohnh » Sat May 11, 2019 7:04 pm

You might very well get an Iron Infusion. Your ferritin of 82 says that you have low BLOOD iron. Your RLS says that you have low BRAIN iron.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do (ferritin test) to check for low iron only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

ViewsAskew
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Re: Scripps Health in San Diego

Postby ViewsAskew » Mon May 13, 2019 2:08 am

Interestingly, I also started with pramipexole and since then, no other DA works as it does. Nor does gabapentin and its sister drugs. Similar for others - seems that this drug must change something in our chemistry. Which is one of the reasons I go back to it. Drat it all, it works. But, opioids work for me, too. I just do not like the side effects.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

badnights
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Re: Scripps Health in San Diego

Postby badnights » Wed May 15, 2019 6:28 am

My concern is, with everything I've tried already, are the people at Scripps going to have anything new to try?
Since your ferritin is low, they might suggest IV iron. They might also/instead suggest opioid monotherapy of an opioid you haven't tried yet (seems like there are lots you haven't tried). Or a low dose of pramipexole along with an opioid (combination therapy). Or they might suggest a rotation in which you take pramipexole until just before you expect to augment, then methadone or another opioid, then back to p.

Those are just some of the things they might suggest. Definitely worth going. :D Keep your heart :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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