An interesting article about diagnosis of Restless Arm Syndrome, where the patient did NOT respond to dopamine agonist treatment used as a diagnostic tool. The patient did respond fully to gabapentinoids.
I must remember this when responding to those who are struggling to get a diagnosis.
I don’t think ‘RAS’ is that uncommon. I have restless legs, arms , back and neck and I don’t think it’s that uncommon. It will be interesting to see how many people on this forum suffer similarly.
It just seems yet another variant of how RLS expresses itself and another variant of what drugs RLS does or doesn’t respond to .
Sorry Joolsg, I don’t mean to be a killjoy and put a downer on a possibly interesting case . 😱
I *think* that the interesting point here is not that 'RLS' can occur in or spread to other parts of the body, but that the patient in this case didn't respond to dopamine agonist treatment used as a diagnostic tool. It is sometimes said that a case of RLS (rather than something else) can be diagnosed by the fact that it will respond to a DA.
I didn’t respond to Pramipexole or secondly, ropinerole. It was when I was thirdly given low dose rotigotine that I was magically better (for 15 months (followed by almost 5 years of horrendous augmentation!). So I don’t know if this RAS patient tried one or 2 different DAs…
I don’t think non response to at least one DA is that unusual.
It makes me feel like I’m being an obstructive cow, but I genuinely don’t think this one off case is anything that useful in diagnosis or management. LOVE to all🤗
That's fair enough - so based on the above and your experience if a potential RLS patient responds to a DA they probably do have RLS, but if they don't respond it doesn't mean that they necessarily don't have RLS. All good.
Actually RAS was a description of patients that ONLY had restless arms and not legs. It is certainly common to have both.
I agree there are some with only arms affected. In fact , there are probably as many presentations of RLS as there are people who have it, whether various sites affected or exact weird descriptions of bizarre symptoms😱🤣 . Plus there is no way anyone should be using DAs these days as a diagnostic tool for anything. They should never be first line treatment and only rarely prescribed in small doses for very short periods, and only if everything else has been tried and failed… .’Diagnostic tool’ sounds like a recipe for perpetuating the use of these largely demon drugs…. 😱😩
It's soul destroying. Even when we find a 'decent' doctor in the UK, they then show their ignorance by saying 'rotigitone has the lowest rate of augmentation' and condemn another poor soul to years of suffering.I also think we need a psychiatrist to study the 'denial factor'. If you look at any RLS group there will be patients on DAs saying it works brilliantly, because they're on a low dose.
I don't believe them. Why are they on help groups if it's working brilliantly?
9 I spent 4 or 5 years in denial. Because I was sleeping at night on Ropinirole, I was denying I was in severe augmentation. Unable to sit still in the day.
I guarantee that anyone on DAs for more than 5 years will be experiencing daytime RLS, but, because they're sleeping at night, they think the increased daytime RLS is normal and their doctors tell them it's the natural worsening of the disease.
I totally agree Joolsg .
RLS is definitely a multidisciplinary disorder anyway. Psychiatrists would be helpful if they could be taught the full implications of the torture and ‘deep pain’, the indignity and humiliation and gender bias (annoying, fussy, drug seeking females)etc
Plus a psychiatrist for the doctors , drug company fibbers and cheating insurance companies’ con artists . Maybe a priest for their last rights before we attack the lot of them🤣🤣🤣
My laugh for the day - Maybe a priest for their last rights before we attack the lot of them
I agree. Using the 5 diagnostic criteria should be all that is needed except in rare cases where RLS is suspected but the results of the diagnostic criteria are not clear cut. Then a trial of a DA for only two days might be indicated.
The danger is that the person will be so pleased that their symptoms are relieved that they will want to stay on it, so the doctor needs to be an expert on RLS so this doesn't happen.
Personally I think DAs should never be used in this way. Even if it makes clarification of the diagnosis a little harder. As long as the doc is ‘on the case’ and prepared to find ways to be sure of the diagnosis, and plan treatment options that will help the patient.
Just my own thoughts. Crazy isn’t it it that we are the ones who are working on how to manage RLS and precious few medics really care.
But there are some gems out there..:🥰
We need a few in U.K. . Hardly any here..😔
I agree. Most of us experienced Restless Body Syndrome during DA augmentation. And I still got it in my hands & arms for several years.
I don't see it as a downer, honestly. It's just that many 'experts' use a DA as a diagnostic tool. They say that if you don't respond positively to a DA, you probably don't have RLS/RAS.But this case and your experience just shows yet another area of RLS diagnosis and treatment that is incorrect.
We really are ALL different.
X
I would just like to add my case to those who experienced no relief from pramipexole (nor gabapentin) yet met all criteria for RLS. When Dr. B prescribed low-dose methadone, my symptoms cleared immediately.
It's very interesting. It's clear that there is so much more to learn about this disease. Just imagine if the same amount of research funding was spent on RLS as on MS or Parkinson's?
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