Rapid or Gradual Onset/Progression?

[Ellephant]

Hey there,

I saw a neurologist specializing in movement disorders at Columbia in nyc yesterday. He thinks that my RLS symptoms are either conversion disorder (admitedly possible) or an exacerbation of my tics (I don't think that's possible at all - completely different things). He said his main reason for not considering a diagnosis of RLS is that my symptoms progressed too rapidly. I'm 25, and in about a month I went from having 0 RLS symptoms to every single one depending on the time and day, including in my arms and other parts of my body.

I'm wondering what the [anecdotal] data suggests regarding rapid onset or progression in younger patients. I'd like to get on the conversion disorder train, but I'm questioning how well versed this doctor is in RLS since he's basing the inappropriateness of my progression on past patients that he has treated, rather than new evidence or research.

Thanks!

[ViewsAskew]

I don't know how often it happens, but rapid onset does occur. I also don't know how much (if any) research there is about it). Sometimes something set it off - drugs (such as an anti-depressant, a psychotropic, or other drug known to exacerbate WED/RLS), surgery,blood loss, for example - and sometimes nothing can be identified. I also am not sure how many of these people had NO symptoms prior. I, for example, had minor symptoms since I was a child and went from very minor to very severe in a short time (drugs set off mine).

It's not likely to have it at any time of day with no difference in symptoms. Even in severe cases, there is always a circadian component - the symptoms are worse at night and better in the morning. Movement also always should help. If it doesn't, it's not WED.

Small fiber neuropathy is one disease that's popped up here two or three times - people with rapid onset in multiple parts of the body who turned out to have SFN only, or to have SFN plus WED/RLS.

Some doctors believe that one way to test whether it's WED is to use a dopamine agonist. If it doesn't work, some doctors believe if cannot be WED - they think that the DAs always work. Now, someone may not tolerate them, so they can't take them, but that is different. It is an option to consider, I suppose, to test and see what happens.

[badnights]

Someone who posts here had rapid progression and late onset; I forget who. It has been said in a few sources - see for example the book Clinical Management of Restless Legs Syndrome - that people who have early onset experience slow progression, that people with late onset experience fast progression.

Ask Ann's questions of yourself, to help you decide if you have WED/RLS. They are also laid out differently here : http://irlssg.org/diagnostic-criteria/
Also try the diagnostic tool at http://www.willis-ekbom.org/wed-rls-diagnostic-tool - I have not used it, but surmise that you should take it with a grain of salt.

[Polar Bear]

When my WED first started I was about 33 years old. i.e. 1982.
One evening sitting on the couch my 6 year old (now 37) son was lying sleeping with his legs across my lap. He was very comfy and I didn't want to disturb him. I sat as long as I could and then 'slid' out as best I could from beneath his legs.
That evening was my first and major attack, no niggling symptoms prior to this.
From that day the symptoms occurred just about every night, I was not taking any medications.
Before long (weeks) my arms also were involved.
There was no question of augmentation as I still was not taking any medications.
From occasional magazine articles I knew that I had RLS/WED but everything I had read suggested it was a minor issue and of course no medications were ever mentioned, excepting perhaps tonic water.
Before long it was happening at every 'at rest' situation, cinema, dinner, even visiting at someone elses home became an event where I paced their home.

I would imagine that what I had was rapid onset even though I was was only 33.
It was only after I saw an advert on tv when travelling in the US for this torture and also trawling the internet one long night and finding this site that I realised help may be out there.
I visited my Dr and he prescribed me Requip. There was never any question about limits of dosage.
He knew nothing of WED/RLS.
Like most of us here it took trial and error and the addition of tramadol/codeine before any semblance of relief was found.

That was all a bit long winded - my point being that WED hit from from out of the blue, without warning it was 'full on' . And it took over 20 years to get help.
I am so grateful for the Foundation, for this board, and for all the posters and members who speak of their own coping mechanisms.

Get the information, and get to the doctor.
There is no point in anyone being a hero .... everyone should take the relevant information to their doctor and seek help.