Not RLS

My neurologist insisted that I had RLS 4 years ago and I did not know anything about this condition then. From this Forum I have been on a steep learning curve and did not think I fitted the criteria although he still said it was RLS. I evnetually insisted on a 2nd opinion and found someone at Kings College Hospital that had an interest in RLS and just had a video appt with him. He categorically said it was not RLS as I did nto fit the criteria so why did my original neuroligist keep insisting it was, that's rhetorical as I know full well the answer to that! So he is contacting my doctor to start other tests as to why I have the sysmptoms I have. This has wasted 4 years of my life and many many different appointments, need I say more. What I will say is that I now realise what an awful condition this is and really feel for all sufferers.

[BENGAL1000]

Could you please elaborate on the symptoms that you do have?

[Hidden]

Asking the same as the other person has said, what are your symptoms. ?

[Hidden]

If this is the case then it apears you have, in some ways, wasted 4 years. i.e. being treated for something you didn't have and not being treated for something you do have.

Such misdiagnoses do happen, often a genuine mistake. I have had a couple of misdiagnoses. One went on, luckily, only for several months. They were very uncomfortable months, partly because of the side effects of the increasingly rigorous treatment being prescribed. The worst part was being shouted at for "non-compliance".

I was given short courses of antibiotics, none of which worked, for a condition, which when correctly diagnosed required ongoing treatment for 8 years to control symptoms. Followed by surgery which "removed" the problem.

The other misdiagnosis resulted in me having unnecessary surgery.

It's difficult to know what to do in these cases, there are complaints procedures but health professionals have a lot of ways of getting out of accepting responsibility.

Like the others, I'm curious what your symptoms are. Your case is not unique. A few people post on here either self-diagnosing RLS or with a misdiagnosis.

[Hidden]

My symptoms are on my right foot - 3 toes feel are though they are being squeezed endlessly and sort of pulled out of their sockets. I have never had any urge to move and this pain is only relieved by being in bed. Difficult to wear shoes as my foot feels as though it is several times larger than my shoe, so extremely painful to walk unless I have very loose casual shoes. Never had problems sleeping. I have the same but very vague sensation in my left foot and always thought it was related to my back problems but always informed it was not. Anyway its back to the drawing board now but at least my gut instinct was correct thanks to all the great people on this forum.

[Hidden]

Going by what you have said regarding your symptoms, i would say you dont have RLS. You HAVE to have the urge to move that is one of the most important part of the RLS criteria to be diagnosed as having RLS, and you have said you have never had any urge to move , also most of us have to get out of bed to pace to get some relief. Seems you dont have to as your pain is relieved by being in bed, I hope you find what is causing your problem and you get the right treatment for it.

[Hidden in reply to Hidden]

thank you

[Ranjits]

Which doc have you seen in kings Iam asking my doc foe refer to see neurologist

[Hidden in reply to Ranjits]

I had a not very succesful video appt yesterday, he could see me but I could not see him and also difficult to hear him. The Technology was not tested beforehand. His name is Prof Chaudhuri. Even though the appointment was less than perfect he did confirm what I had long felt that I do not have RLS. That's great but now I have to begin the process again to find out what I do have.

Hope this helps.