Not RLS

Hello everyone.

I saw a neurologist 4 years ago and he diagnosed RLS. He would not change his diagnosis even though I have been well educated on this site and i knew it was not. I eventully managed to have a second opinion, a video consultation recently and now have it in writing that it is not this dreadful illness. He said it was probably some kind of nerve compression which would fit in with the problems I have with my back, ongoing treatment for that.

One year is fine for my neurolisgist to misdiagnose but feel I have wasted 3 years of my life because of pomposity and not able to admit mistakes. We all make mistakes, we are human.

Elimination is good so now need to discuss with the medics what the next stage is.

I feel vindicated and it's all down to the very good information on this site so keep up the good work folks.

[LotteM]

Thanks for the update. Now you have to find out what IS behind your symptoms and how that can be treated. I hope it works out better than this awful misdiagnosis.

[Battleground]

So what is it that your Neurologist diagnosed as RLS?

I vote for PLMS when it takes a notion to make you suffer, it can build up a load of steam and have you shaking from head to toe. Often diagnosed along with RLS. I have both along with insomnia of course. I am 85 years old and have lived with these maniacal members of the medical world of undiagnosed for 50 years. No money for this one. Too many doctors don’t feel your pain , and of course it isn’t sexy enough

[Hidden in reply to Battleground]

Hello all.

Have had a telephone appointment with my ortho surgeon today and she agrees with Prof Chaudhuri of King College Hosp that it is almost certainly nerve compression and not RLS. On the waiting list for an injection for this particular nerve complaint. So light at the end of the tunnel thankfully. Will now need to inform the neurologist that his diagnosis of 4 years ago was incorrect.

[Angeoedima in reply to Hidden]

Please let us know what treatment they did on your back and if it helped your RLS. I simultaneously hurt my back ? Annular tear? And now my feet need to move again.

[Hidden in reply to Angeoedima]

Good morning. I have to say that I do not have RLS as confirmed by the consultant at Kings College Hospital adn my present consultant . I have had the injection into certain joints in my spine but warned that it may not have any effect and so it has proved to be. Will wait to speak with consultant again to see if another injection into a different part of my spine will help the nerve compression.

Interestingly I have had increasing bladder problems over the last few years and an unexpected result was that it relieved that problem somewhat. That does mean there definately is nerve compression, it's just locating the correct place for my foot problem, I hope!

Will post again in a few weeks when I see the consultant again.

[LotteM in reply to Hidden]

Thanks for posting, crackingtonhaven. I sincerely hope that your nerve problem soon get located and treated accordingly with good results. One step at a time, but it is difficult to wait after such a long time, I imagine.

[Hidden in reply to LotteM]

Just a quick update, I am now scheduled to have an MRI when an appointment is available, about 6 weeks but at least I am making progress, if slowly.