Why wont anyone listen

My god, why won't any of the drs listen to what I'm saying. I can't live with this constant tugging, pulling, electric current feeling up and down leg, continual ache and pain, jerking constantly,( also have restless legs from it).......I can't do it anymore. WEnt and had nerve study tests, he said it was L4 causing it, that report went to neurologist who wrote a letter to gp saying its nots much shouldn't be causing her this much trouble.....wtf......how does he know what I am feeling. So nothing done there. I have a phone apt with neurosurgeon today, my last hope.......if he says there is nothing to be done.......I afraid I can't live my life like this........

[ChrisColumbus]

I hope that your call with the neurosurgeon goes well (I was confused for a moment then realised that it's already Monday morning in Oz!)

So you potentially have a problem in the L4-L5 Spinal Segment? Have you been (or might you be) diagnosed with lumbar stenosis or Cauda Equina Syndrome? I believe that either could cause the symptoms that you're experiencing in your legs.

[JenniferBut]

Oh that is awful to hear. In Australia there is a good place called the woodcock institute. You can see a specialist via Zoom. Can you find your local org and get a recommendation for a specialist who is good? Its an awful thing, I really feel for you. Get onto somebody decent and get some treatment so you can sleep.

[Marlayna67]

I don’t have any advice, but just wanted to let you know you have our support.

[Simkin]

I 2nd that. We in the UK offer our support & so sorry you do not have supportive medical care and doctors who will LISTEN & try to understand the hell you are going through.

[Edengirl58]

Hi Kathankell,

I’m so sorry you’re at the end of your tether. These are horrible, awful symptoms and it’s so very hard to be battling with them, and then also feel you’re having to battle with the medics.

If you want to try something different, you may be interested in a website called unlearnyourpain.com which retrains the brain circuitry. Worth a look. I’ve successfully treated my debilitating long covid using this, and am now (having been assured by Dr Schubiner that it is applicable to restless leg syndrome) using it for my rls, and though early days, I’ve already managed to reduce my Gabapentin dosage by a third.

Very best wishes.

[bookish]

Hi Kathandkell, I wondered if you were getting vit B12 injections or have ever had deficiency fully tested? You would need tests for serum B12 and serum folate (B9), active B12 (holotc), homocysteine and MMA (methylmalonic acid) plus anti gastric parietal cell antibodies, anti intrinsic factor antibodies and serum gastrin. These still would not completely rule out the possibility but they are the best we have, in conjunction with your full blood count markers like MCV and RDW. B12D could be underlying your nerve and AFib problems and if a genetic methylation issue it could also be affecting other hormones and neurotransmitters. Any autoimmunity yourself or in family? I think you mentioned a thyroid problem - that could be caused by the low B12 or the thyroid can affect the parietal cells and result in low B12. The two commonly go together. ( A musculosketetal surgeon told me years ago that he could do nothing and I ended up on pain meds for 15 years. Lots of research, diet, lifestyle and supplement changes and I am functional, in a far better place mentally, in less pain and off all meds, so there is hope. There is always something that we can do to help turn things around, so hang in there. ) Are you gluten free? Best wishes

[Summer194]

I told a friend who has a history of back pain about my having RLS and he told me that he gets it too and that (for him) it is because of his back issue, so perhaps this is a potential origin for RLS. My back is slightly injured from years ago and so maybe there is a link ? In my experience I have found that medical practitioners seem to know very little or nothing about RLS, and are sometimes dismissive of it. Well sure of course we are all pretending ! ! !

As a psychotherapist I research anything I am not up to speed on so I can best help my clients. I am sure Doctors (who in the UK are paid very well) are supposed to do the same - but seemingly not when it comes to RLS, and I have found also with neuropathy of feet and legs. There are some great you tube videos which outline good information about food etc and exercises which can be useful for both conditions.

I find it incredible that as soon as I stand up the RLS is gone, but within seconds of lying down again, it returns. I have to wonder if in this strange occurrence there may be an answer ?

Let's hope that a cure will be found one day, but meantime that greater care and respect is afforded to those suffering RLS. Hang on in there Kathandkell ! You have friends here !

[bookish in reply to Summer194]

Hi, you might find my link about some of the genetics on a previous post interesting healthunlocked.com/rlsuk/po... .

I'd injured my back years ago although I already had the RLS, but they found that I had a mild form of Spina Bifida, which is common and often is no problem and not therefore diagnosed, however it relates to genetic SNPs in methylation, such as MTHFR, COMT, MTR and MAO. The right form for me of B vitamins especially B12, B9 and B6 plus magnesium made a very big difference. Cheers