New Neuro made me feel about 2 inches tall today, feeling really deflated.

New diagnosis and before diagnosis
1

Well, for nearly 4 years now I have been suffering from worsening neuro symptoms.

weakness in left arm, tingling/creeping sensation on skin, numb patches, internal vibration, weak/unco-ordinated eye movements, headaches, migraines, painful eyes, recurring urine infections, bowel urgency.

MS tests came back negative in May 2013 and my Neuro then tested for Lupus which was again negative. He said he would therefore be referring my to a specialist in Edinburgh for more tests, he was leaning towards some sort of functional neurological disorder.

He then told me that he was moving home and would be leaving my local NHS so he was referring me onto another Neuro in the area to continue with my tests.

Well, I went to my first appointment with the new Neuro today and she told me she had looked through my medical notes and felt that we were now at that point where all diagnostic tests had been exhausted and that my symptoms sounded more like anxiety, depression than anything neurological.

I lost my job in March 2013 due to the time off I had had with the bowel/urine issues and she felt that this along with the tribunal I am now pursuing would not be helping my symptoms. I explained that the symptoms began around 4 years ago at a time where there were no stressful issues in my life and that I’m a pretty laid back person most of the time anyway. Losing my job in March 2013 was also no big deal as I got another job within 2 days of being paid off.

As for the tribunal with my old employer, my union are taking charge of that, so again there is no real stress involved.

She said that my body was telling me to take it easy and slow down and that was all.

She is not referring my for any further tests and said that maybe counselling or seeing a phsyciatrist would help.

My previous neurologist sent a letter to my former employer stating that he felt the diagnostic process would lead to either a named conditions like MS/Lupus or Functional Neurological Disorder all of which would be covered under the equalities act. For the tribunal my former employer are now asking for the neurologist to confirm my diagnosis and it’s affects on day to day living. I asked the new neuro about this today and she said ‘but there is no diagnosis because there is nothing wrong with you’. She said it in such a condiscending way as if she was trying to brainwash me into believing there’s nothing wrong and that I’ve been imagining all of my symptoms for all these years.

So not only am I still living with the symptoms without treatment or further testing but I now no longer have the support of my neurologist in relation to my tribunal which will make it completely fall down as the main basis is that I suffer from an ongoing health problem which has lasted more than 12 months and is likely to last for more than 12 months from now.

I just can’t believe it has been 2 years of testing (3 months in between NHS appointments) and I am now being told there’s nothing wrong with me, it’s all in my head and no further tests will be done.

2

I don’t know what else to say other than sorry you’re going through this and for so long -x-

3

I don’t know what else to say other than sorry you’re going through this and for so long -x-

4

I strongly suggest you go back to see your GP and ask for a referral to a different neorologist. You do not have to stay in your own area. If your prepared to travel, you can go anywhere in the country. I have a friend with Lupus who travels from the east coast to London once a year because that where she feels she gets the best care. Its your body, if you feel that things are not right then there probably not. What about this specialist in Edinburgh…cant your GP sort that? Your GP should be looking to send you to a more specialist neurological unit. Dont give up…you’ve just met one neurologist that cant be bothered to make the effort…shame on her. Good luck, let me know how things go. xxx

5

What time scale are you under for the tribunal? Do you know what tests they were going to suggest and would the union pay for them to help support your case? Your other option is to get an independent report from a neurologist to see if they support your first neurologist. From a tribunal point of view it would be better if they do say it is a result of anxiety and depression as you would still be covered by the Equality Act. It would cause more problems if they simply state there is nothing wrong with you. I assume you have access to the union’s solicitor as you need legal advice on what to do next. The Human Rights and Equality Commission can offer advice over the phone, but not if you have legal advice. I hope you get it sorted.

6

I think a functional neurological disorder implies that there is nothing actually wrong on the neurological side, so both neurologists could effectively be saying the same thing, however, some neurologists appear to be a lot more cynnical than others about how functional symptoms come about i.e ‘its all in your mind’, whereas others seem to assume that something unknown and beyond the patient’s own volition is disrupting the brain’s processing, affecting sensory perception and misdirecting motor control signals, which effectively mimicks neurological symptoms. To use a computer analogy, it is a software rather than a hardware problem, so testing the hardware will reveal nothing, but the computer function appears faulty. Your first neurologist appears to have seen no reason not to treat it as a diagnosable illness and another neurologist might agree, but I reckon its a bit of a lottery on that score.

7

I agree with mrbobowen.

Your first neuro was “leaning towards some sort of functional neurological disorder” and “referring me to a specialist in Edinburgh” - I know there is Dr Jon Stone at the Western General, Edinburgh dealing with functional neurological disorder. He has a website www dot neurosymptoms dot org .

I would try to get my GP to refer me to Dr Stone.

8

What a horrible situation to be in x I presume by MS tests you mean brain & spinal MRI’s and Lumbar Puncture & VEP’s?

As for the Functional Neurological Disorder - I rhave been told and also read on here in another post that this is a diagnosis they use when they know it’s a neurological ‘malfunction’ - but don’t know what it is - it’s not just that they are saying it’s a psychosomatic thing xxxjenxxx