Just want to vent some anger!!!!

I need to post on here because I know that many of you will understand my frustration and disappointment.

I had my neuro appointment last week after suffering from many symptoms and the fact that my doctor was concerned about me. I had also been keeping a diary of my symptoms - this was for my benefit to see if there was a pattern and also so that I didn’t forget anything during my appointment.

On the lead up to seeing the neuro, my chiropractor had mentioned he was concerned about some form of nerve damage because that was the only thing he could think of as to why certain things were happening on my left side. Joints fine, spinal alignment fine, etc, etc.

So armed with my diary and my husband, I entered the neuro’s room. It turned out that I had seen this neuro a few years ago when I was suffering from severe migraines - these migraines are no longer a problem for me.

I started explaining what had been happening, he then asked me to walk, then sat on the couch and did some pulling and poking. Told me to sit back down and advised that I need to see a Physio!!! That was it. 10 minutes in and out.

I left feeling completely shocked.

So, I decided to see a Physio this week - to get a fresh pair of eyes and to talk things through.

I explained about what had been happening and before I told her that I had seen a Neurologist, she said that I should be referred to see a Neurologist because this was sounding like it was out of her remit and more nerve related. Anyhow, I discussed my recent appointment and she was as equally shocked as I was. Especially when I told her that there was no follow up, no MRI, no nerve conduction study etc.

She continued with her assessment, very thorough and advised that, yes, she would help in any way she could but if things didn’t improve then she would be writing to my GP insisting on another referral.

I’m not suggesting that I have MS but I know there is something weird going on. Especially when a Chiropractor and a Physiotherapist are both concerned, as was my GP.

I’ve had blood tests and all is fine. Vitamin B is perfect and my Vitamin D levels are brilliant now - back in April my Vitamin D levels were extremely deficient (10nmol) - I have been taking Vitamin D along with Magnesium and my last blood test my levels had raised to 125nmol. So absolutely no issues there. In fact, 2 years of bone pain, migraines and extreme fatigue all day, everyday, are now a thing of the past.

I am due to see my Physio next week and I have decided to ask her if she can recommend someone I can see as a private referral. During my assessment with her she confirmed that there were definite issues with the reflexes in my left leg and I also experienced a clonic jerk (I think that’s what she called it). She also noted a number of other problems that she was concerned about.

I feel pretty fed up and just want some answers.

Thank you so much for listening.

Hello Mrs Fred. I completely understand your frustration. I’d definitely have a private consultation if I were you, as your likely to be referred to the same neuro through the NHS.

  • Sad to have read all this, as for bone pain.I used to think I was being neurotic as I thought you couldn’t feel as if the bone in certain part was sore.when I was d x my physio explained that it was the actual nerves.don’t know if this makes any sense to you. Don’t let them get away with the way that you are being treated.it’s a hard slap they are asking for.keep a note of everything that they have said(and the dates)


I just typed in “Private neurologist” into Google and found some info. (Some rubbish but some useful)

if you can find one it will cost but you should get a rapid appointment, then you need to work out if they are any good (reviews or more Googling) and then see if they have an NHS practice too.

When you are confident in the medical practitioner you will be able to take things forward.

good luck