Theories about WED

[ViewsAskew]

Steve, great point about the complexity of systems. I work with human systems - the workplace. People often want a problem to be solved and assume that it's one person or even a team. They don't realize how everything that happens in the company is potentially involved, including all the forms of incentives used, the processes, the work itself, and so on. I have to chuckle (silently, of course) when some manager wants everything fixed in short order and for low cost.

Frunobulax, type/talk away. It's a great way to spend your time and we appreciate it.

[Frunobulax]

Well, one question at a time
Question of the day (TM): Electroconvulsive therapy is suspected to increase neurotransmitter production, including dopamine and seratonine. Is there a relation to WED? Is our irresistable urge to move somehow related to the artificial cramps (or epileptic seizures) induced by ECT?

A slightly different version: Symptoms invariably worsen with rest. The urge to move forces us to stop resting. Perhaps the only function is to ensure that we stay awake or help our brain get into a more active state, producing more neurotransmitters?

Both ideas wirk well together, if we assume that any increased physical activity (may it be walking or cramping) forces some brain functions in a more active state.

[Frunobulax]

OK, no thoughts about that? I was wondering if ECT may help the more extreme cases among us, even if it is clearly something that shouldn't be prescribed lightly.

OK, next day, next question. From taking vitamin B12 in high doses I clearly got a boost in my brain dopamine production, since I not only experienced no WED symptoms for 2 weeks, but was also riding a high wave - in retrospect I was clearly euphoric. Now, what could have caused this (with the additional info that the effect started to vanish after two weeks)?

According to http://www.aafp.org/afp/2003/0301/p979.html, vitamin B12 is not only used for breaking down HCy (as suggested in the "beer experiments"), but also for converting methylmalonic acid to succinyl-CoA. Well, this doesn't ring a bell. Any clues? The "inflammation" website claims that vitamin b12 and folic acid are depleted by the conversion of L-Dopa to dopamine, so those of us (including me) having regular doses of L-Dopa would see some effect here. If this is true, it would offer another explaination why L-Dopa loses efficiency for RLS patients (apart from augmentation): If vitamin b12 and folic acid are required, then a vitamin b12 deficiency would hamper this conversion. (But I did discontinue the use of L-Dopa after 2 days, but the dopamine levels stayed high for 2 weeks. So it couldn't be a more efficient conversion of L-Dopa alone.)

I understand that HCy damages the dopamine producing cells in the long run, so reducing HCy levels with vitamin B12 could help us in the long run, but it shouldn't be an immediate reaction. So what gave me the dopamine boost? Any ideas appreciated, even if they are wild guesses.

[Polar Bear]

A person I knew very well suffered from a severe and chronic personality disorder. ECT was used several times unsuccessfully to try and kick start a mood lift.
This is the only knowledge I have of ECT.

I find it (from my uneducated stand point) to be an alarming thought for RLS/WED, but I do repeat that I am in no position to make an informative comment.

Of course there comes the time, and most of us have been there, when we are totally at our wits' end, and would be open to consideration of absolutely any option.

[Frunobulax]

Yes, ECT can have severe side effects, and I guess the way they used it 50 years ago was a little like medieval age doctors used to treat their patients (bleeding and such): They did the same to everybody regardless of the symptoms, and the therapy often did more damage than good. But I'm told we're past that now.

I would argue that the side effects of WED medication can be as severe. And I'm talking from personal experience here.

[trudyg]

I'm new to RLS and this discussion board and see that Fruno...(the most recent post) says that "most of us" experience the urge to move...so there are RLS sufferers who have the leg discomfort without the urge to move? I ask because I don't and am trying to figure out if I actually have RLS or something else.
Thankyou!!

[Polar Bear]

My understanding is that the 'urge to move' is the biggie when diagnosing WED/RLS.

[trudyg]

Thank you Polar Bear. I'll return to my Dr. and see if it might be something else.

[Frunobulax]

I'm new to RLS and this discussion board and see that Fruno...(the most recent post) says that "most of us" experience the urge to move...so there are RLS sufferers who have the leg discomfort without the urge to move? I ask because I don't and am trying to figure out if I actually have RLS or something else.
Thankyou!!

The "most of us" was referring to the "leg" part, not the "urge to move" part.
I've had phases where the urge was exclusively in my arms and my upper body. This was when I started taking Gabapentin however.

.f

[ViewsAskew]

It's hard to separate out two components - the sensation and the urge. Most of us have a sensation - it's weird, electircal, icky, painful - something we do NOT like. At the same time, we have an urge to move - we're anxious, we MUST get up, move our body, shake our limbs, walk, run, do SOMETHING.

But, they are two components. The sensation, then the urge. Not all of us have this sensation. But, from what Dr Buchfuhrer has told me, we all have the urge.

[Joanie60]

I have nothing to add, but want to thank all of you contributing to this thread. I am WAY in over my head, and will probably have to read this a dozen times more to BEGIN to follow it, but just wanted to say I appreciate your time and thoughts.

With that said, I did gather that buying a bottle of B-12 at the pharmacy tomorrow might help

Joanie

[Frunobulax]

I have nothing to add, but want to thank all of you contributing to this thread. I am WAY in over my head, and will probably have to read this a dozen times more to BEGIN to follow it, but just wanted to say I appreciate your time and thoughts.

With that said, I did gather that buying a bottle of B-12 at the pharmacy tomorrow might help

Joanie

Good luck! I have no idea whether 90% or 0.09% of WED sufferers will profit from vitamin B12. But I have read that up to 30% of people (all people, not WED sufferers) aged 65 or more have a shortage of vitamin B12, so I hope it's somehwat more than 0.09%
Just make sure you dissolve it under your tongue, this is more efficient than swallowing it.

[Rustsmith]

For those who have found the preceding discussion in this thread interesting, you might want to see if you can find a copy of the following:

Restless Legs Syndrome, Diagnosis and Treatment, edited by William G Ondo

At the time that I bought my copy from Amazon, there were a number of used paperback copies available for $0.01 plus shipping, but the new hardback version was selling for $35 and the electronic copy for $186.

The book is intended for medical professionals, so it is not easy reading. However, it provides a number of insights into the science behind our disease that I have not seen discussed elsewhere.