RLS and Dystonia Question

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
teadkin
Posts: 3
Joined: Sat Jun 23, 2012 5:22 pm

RLS and Dystonia Question

Postby teadkin » Mon Dec 30, 2013 11:37 pm

I was wondering if anyone has been diagnosed with Dystonia (legs, back, chest and/or neck) and later started showing symptoms of RLS. I have an 18 yr old son with Dystonias (in all of of the above mentioned areas of the body). He has a history of Tourette's that has diminished over the last 5-6 years to tics. Last night, after taking Benadryl for a cold, he started having restless arms and legs. I currently am being treated for Restless arms and legs, so I knew exactly what he was describing. Mine is related to untreated low B12 levels for years. My father, aunt, and 2 great uncle's all have Parkinson's (2 were early onset.) I just have to wonder how much of these neurological conditions are related. The doctors suggested genetic testing, but because he has already had so many neurological problems, he says that he wouldn't want to know if he was going to end up with Parkinson's anytime soon. He is leaving for college next Fall and I wonder if anyone has seen a fairly rapid progression of symptoms like this before. He was only diagnosed with Dystonia's just under 2 years ago about the same time as he was diagnosed with herniated discs, Degenerative Back Disease and GERD at age 16. RLS just seems like an odd new diagnosis for him....Any insight to your progression with similar diagnoses would be really helpful. Thank you. *His grandfather (with Parkinsons) and his brother have a history of Epilepsy. The same brother also had Tourette's and he has an identical twin that was "blessed" to only have cervical dystonia (which typically doesn't spread). Every neurologist seems to make some comment about our family history...

ViewsAskew
Moderator
Posts: 14648
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS and Dystonia Question

Postby ViewsAskew » Tue Dec 31, 2013 4:28 am

To my knowledge, there is no relationship between these disorders...that said, Tourette's and WED/RLS both are related to dopamine issues. So is dystonia.

So, I guess, in one way, it makes sense that if there is a significant issue with the dopamine system, a person could have multiple disorders related to it.

Many of us have had our WED kick in significantly at some point. Some of us have had it disappear again, some of us just have it worse for what seems forever.

As you likely know, Benadryl is a no-no for WED/RLS sufferers. The first major attack I remember was in junior high when I took cold medicine - golly was it nasty!

If your B12 is chronically low, have you been tested for celiac? It's one of the symptoms (low B, low iron, and other vitamin levels or common with untreated celiac).

Have you and your son had your serum ferritin levels tested? This is extremely important for WED sufferers. Ask for the actual number, not whether it's in the range. The range is likely 15-225 or thereabouts, but we need it to be at least 100!

Oh, many people here have seen a correlation with disc/back problems and WED. Not sure why, but it's common enough that it doesn't surprise me.
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.

teadkin
Posts: 3
Joined: Sat Jun 23, 2012 5:22 pm

Re: RLS and Dystonia Question

Postby teadkin » Tue Dec 31, 2013 4:47 am

Thank you for the advice. I'll ask my doctors about the ferritin levels. My doctors attributed my low B12 levels to having been a "pseudo-vegetarian" for the last 26 years. However, I do eat chicken, just no pork or red meat. My grandmother was an R.N. (back in the day). My mom and her sister, who were also R.N.'s, said that she gave herself B12 injections just like I do. Whereas, I was tested and had a B12 level of 88 (very low), they never knew why she took the injections.

My symptoms never showed until I had 2 fusions on my back at age 35. I just don't understand why my son has had so much trouble with neuro symptoms at such a young age and even the orthopedic surgeon was puzzled as to why he had such back problems at his age.

He has an appointment with his Movement Disorder doctor on Thursday. Hopefully we will learn more then, but he is difficult to understand due to the language barrier and I always leave there with more questions than when I got there :)
Thank you again!

ViewsAskew
Moderator
Posts: 14648
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS and Dystonia Question

Postby ViewsAskew » Tue Dec 31, 2013 5:06 am

Hope you learn more.

Sometimes there just doesn't seem to be any easy answers. Something in the genetic makeup just turned out that way. In a hundred years, they might know why or even how to prevent it. Right now, we just have to hope that we can treat what we end up with, however we ended up with it.
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
Moderator
Posts: 4371
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: RLS and Dystonia Question

Postby badnights » Mon Jan 06, 2014 3:39 am

One thing you should be aware of : some people have such mild RLS/WED that taking Benadryl (a well-known trigger) will set off symptoms, but after the Benadryl has worn off, symptoms disappear.

Also, WED/RLS that is secondary to celiac or low ferritin or other problems will often improve dramatically when the celiac or intestinal disease is treated or even if oral iron is taken to raise ferritin. (The latter is not really fixing the problem of low ferritin, since we typically have to keep taking the iron otherwise ferritin levels will drop again, but it does serve to alleviate the symptoms if we can get our ferritin levels up above 100).
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

teadkin
Posts: 3
Joined: Sat Jun 23, 2012 5:22 pm

Re: RLS and Dystonia Question

Postby teadkin » Mon Jan 06, 2014 2:30 pm

Thank you for the reply...It is all so confusing to me. He was checked for celiac disease (and his ferritin levels were checked) in September when he was hospitalized for dystonias and GERD. Friday, he had a scope done of his vocal cords and they found ulcers them...maybe related to the GERD (don't know how that plays into celiac disease, but those tests were negative) Just last night, I realized that I started having symptoms of RLS as a child (around my sons age). My mom used to tell me that I was just "restless" and "couldn't sit still". That was long before I stopped eating red meat and pork...so I gather that my RLS has nothing to do with my B12 deficiency (unless that is genetic as well...but everyone always thought it was due to my diet). Ughh...I suppose that I'll just refrain from giving my son Benadryl and let nature run its course with the RLS for him. I don't know if this means that he'll have the same neuropathies like I do, but I guess only time will tell. Am I the only one that goes to see these specialist (in well-known hospitals in the big city) and still feels like they haven't quite figured any of this out?? It's like they never finished studying the subject of Neurology...if the specialist don't have answers, then who does?? Here is my analogy to visiting the neurologist...You have a leaky roof...you call a contractor..he shows up and says..."Yep...it's leaking all right...don't know why, but here's a bucket so your floor doesn't get wet..and BTW..that will be $300". Getting tired of all the "buckets"...;)

ViewsAskew
Moderator
Posts: 14648
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS and Dystonia Question

Postby ViewsAskew » Mon Jan 06, 2014 11:27 pm

Unfortunately, MANY of us feel as you do. Yeesh. I live in Chicago and fly to California to see my doctor. I've tried at least ten local docs and written or called 30-40 more. They're useless.

In their defense, some of this is uncharted territory. But, not all of it! And, all too often, we learn things that they should've known. Makes me mad every time I think of it.

Per the ferritin, don't rely on THEM when they say it's OK. Get the number yourself. It MUST be at least 50 and some doctors would say it must be higher than that. To take a drug such as ropinerole or pramipexole, it MUST be at least 100 or you risk the symptoms getting worse.
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
Moderator
Posts: 4371
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: RLS and Dystonia Question

Postby badnights » Mon Jan 20, 2014 7:41 am

Am I the only one that goes to see these specialist (in well-known hospitals in the big city) and still feels like they haven't quite figured any of this out?? It's like they never finished studying the subject of Neurology...if the specialist don't have answers, then who does??

For some reason we grow up thinking doctors know everything. But how can they possibly know everything? Despite all the knowledge in medicine generated over the last centuries, only 2 or 3 diseases can be been cured (I forget the real number, but it's small. Maybe zero.) The body is hugely complex, and even what little is known of the brain shows all sorts of really complicated feedback loops involving chemicals whose functions are not fully understood.

A neurologist could know everything that is known to mankind, and still would not know the answers. They need to learn to communicate the uncertainties better! And some of them think they're supposed to act like they know it all, which just makes things worse.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Special Populations: Pediatric, Pregnancy, Secondary, etc.”

Who is online

Users browsing this forum: No registered users and 1 guest