What am I to believe?

[Claes]

Hi,

Spoke to my neurologist today and told him that I think it might be RLS that I have. He didn't think it was, for instance he said it was very rare to have symptoms in other places than in the legs... it does seem from reading posts here that a lot of people do still. Also, I'm 32 and he said it was very rare to get RLS at such a young age... I have probably confused him a bit as well... I might have both a sciatic problem and something else and because my symptoms sound quite scattered and incoherent I was stupid enough to "spare" him some of it... so when I bring it up now it really sounds like I'm making things up.

A little more than three years ago I got a tingling feeling around my head from time to time around night, I only had it at night. Then, I started having weird feelings of pressure inside my left leg... I still didn't really notice a lot. I did however notice when one day the left side of my left leg went almost numb, after having gone numb the sensation returned but it burned for two months, incessantly. I immediately though I must have MS or something and I was tested negative with a lumbar puncture, and the symptoms kind of just came and went so it didn't really look like it either on closer inspection. In any case, I got a depression and soon after my legs started to burn and feel weird as well as similar sensations in the left arm. Long periods of time I have very little problems, and then it comes back.

It goes away if I move, it comes late in the day or when I'm tired and most of it is in the legs and feet although I do have symptoms elsewhere. For example, I tend to get pills stuck on the way down and have sores on the oesophagus which hurts qute a bit, when this happens virtually my whole body starts to burn... really unpleasant... to say the least... RLS is the only thing I've found that it even vaguely seems to resemble... apart from of cours vague statements from docs about psychologic origins. I'm very open for such explanations but I always get the feeling that it's a non-diagnosis, it's what they say when they don't know. It seems that the problems do get worse with depression... or if it's the other way around, I haven't figured that out myself.

Any input is appreciated... my mystery affliction is really beginning to get on my nerves in more than one sense...

Thanks in advance,
Claes

[Butterfoot]

Hi Claes,
I don't believe it's unusual to have RLS in other parts of the body besides your legs. I also have it in my arms. RLS can affect you at any age, although I have read it's more prevelant in older people. RLS at a young age is more likely genetic. Possibly your RLS is a symptom of another medical problem. You might want to get a 2nd opinion. I was fortunate to find a Neurologist who is familiar with RLS and recognized the symptoms as soon as I started describing them.

Good luck with finding a treatment to help.

[Penguinrocks]

I think it's time for a new Neuro. The first thing she said to me was, "RLS is such a bad name for this as it affects so much more than just the legs"

Loves
Penguin

[IanFraughton]

I checked out the above link, nothing to be worried about. Sounds kinda interesting actually, should investigate proxy servers more in the near future. But yes, it is obviously spam and needs to be deleted as it has nothing to do with RLS or PLMS.lol

I've never been to a Neurologist before and I'm afraid to mention it as I'm scare they will ask for a spinal-tap. Has anyone ever had one as a suggestion from their Neuro? If not I'd feel a little more better asking my doc to send me to one, as he seems reluctant to dx me the kinds of meds I need. Hoping a Neuro would straighten my doc up as far as RLS goes as he seems overly confident in his abililities as a doctor in this area.lol

Peace

Ian

[ViewsAskew]

Gotta say I've seen 4 neuros and a sleep doc and none ever mentioned a spinal tap. And it's a good thing! I don't think you have anything to worry about, Ian, and if they do, just say no. I've never read that this is a common test, or even an uncommon test, related to RLS/PLMD, although I certainly haven't read everything by far.

Go for it!!! Doesn't mean they will for sure help, though, as they don't always really get it, either, but your chances are better than who you're seeing. And you can't just change your PC can you? Or am I misunderstanding how it works in Canada?

Hey, glad to see in another post about the job! Congrats. Hope it works out well.

Ann

[Guest]

I've had RLS since I was about 10, that's a long time of people thinking I was crazy! I also have it in my arms now. I've gone to a neuro but he didn't tell me any more than my reg dr. did. At least my regular dr. was willing to learn more about something she wasn't very educated about. The neuro thought he already knew everything. I've found that RLS is so unexplainable but the minute someone who has it describes it- it's always exact. I bet everyone here read the first persons symtoms and said "yep, they've got RLS".

[becat]

Hi everyone,
I'm back and slowly reading all the post. Just two cents here about the spinal tap.
It's not uncommon for docs looking for MS to ask for a spinal tap, but it's normally later in the testing phase. The spinal tap is looking for + or - protien bands. If +, how many there are in your spinal fluid.
Having spent the last 10 days with my sister in law, who has RLS and MS, I learned a ton. We compared notes and ideas about these two disorders.
I'm less offended, ONLY NOW, that docs seemingly want all these test.
I'm really starting to understand that it would be so hard for a doc to hear about some of our symptoms and not really want certain test, simply to rule out things like MS.
MS is one disorder that the earlier you catch it, the better it would be.
My sister in law is on some rotten medication, but it might help postpone what will happen unless a cure is found.

[Hinklebell]

I have been suffering from RLS since the age of 6 or 7, and chronic depression early on as well. I wonder how many others beleive they had this at an early age, and also have accompaning depression, or ADD. In the last 10 years (I am now 40) or so, I've had symptoms in my arms as well. My husband thinks I'm nuts when we're up watching TV and not only am I shaking my legs every couple of minutes, but sometimes my arm/s goes shooting up in the air. Lately I've noticed my symptoms are stronger on one side (the right side) than on the left.
My first memory of having this was when I was very young (maybe even earlier than 6), and was at my Grandmothers house. We had been running around all day on the cement by the pool and swimming all day, and that night I had to share a bed with my grandmother and she kicked me out, because my legs were not only waking me, but waking her as well. It was very very bad that night, and I can only attribute that to possibly, running hard, barefoot on the cement. When I was older and on a hiking trip, where we hiked daily I had it every single night. I think activity makes it worse sometimes. I'd like to know other people my age, and what their symptoms are.