I have been under a neurologist for 5 years due to deterioration of health after a severe flu episode back in 2013. My health has deteriorated to the extent where I could not get out of bed for months due to being so poorly. I have been trying to get help from my neurologist explaining my symptoms in detail but up until recently when my GP did a referral to a CFS doctor, he was saying all my symptoms were migraine! Despite turning up in a wheelchair due to severe weakness and feeling so poorly I couldn't stand up, he was still saying migraine. I repeatedly said its not migraine what I am suffering from, and the only way I can explain how I feel is that I would expect to feel this way if I was just about to die, but it can last for weeks!
I saw an endocrinologist about my symptoms but it was like he had been informed by a very angry and stubborn neurologist that I did not have CFS but I had FND. FND was never explained to me or brought up prior to my CFS referral, therefore I obviously did not trust my neurologist or get any reasonable explanation as to why he had all of a sudden changed his diagnosis and why he thought it was this other condition.
I have some questions that I am hoping other people with an FND diagnosis may be able to shed some light on. Any information, knowledge, advice etc would be much appreciated:
1) During my last neurologist appointment he shown me the door and said "I am 100% certain that it is FND and only FND you are suffering from. You disagree so there is the door. I am not doing any other tests and wasting any NHS money when I know what it is".
I then explained that the only tests of elimination he has done were the lumbar puncture, CT scan, MRI scan 5 years ago and that no other auto immune diseases had been eliminated, or heart problems etc. I also asked if I could have a letter explaining all tests done so far so I can see what has been eliminated. He refused and said he doesn't need to do anything as he knows what it is.
My question is: Do I have a right to request certain tests to eliminate other conditions and do I have a right to request a letter explaining what tests have been done and what has been ruled out?
Secondly, my neurologist said in order for me to be diagnosed with FND I need to be hospitalised for at least 1 week and I cannot see a specialist FND psychologist until I have been observed in hospital and diagnosed. Is this true?
Can I not be referred to an FND specialist to determine whether they think it is FND as an outpatient?
I have had a baby recently and I do not want to leave her, she is my world which is why I have to get better and fight for my rights and want to get better so much.
This leads onto my next question. I have direct payments to help with my care. If I have a bad relapse where I am bedbound, are there any agencies that can help disabled parents provide care to their children? I have been past from pillow to post, Adult social care say its not them as they can only help with my care, children's services say its not them as its due to my health why I might struggle taking care of my baby. No one seems to know anything about who can help me.
Also, what is the difference between FND and CFS? The severity of my episodes are directly related to both physical and mental exertion. Can this be FND?
Is severe nausea and severe flu like symptoms to the point I feel so unwell I am unable to move and want to die to stop the suffering, part of symptoms relating to FND?
Can pregnancy improve and even eradicate FND symptoms? I have become pregnant despite appropriate protection and knowing how unwell I am, everyone advised me to abort. I could not go through with the abortion, mainly due to a traumatic experience I had several years ago where I had to terminate a pregnancy where my baby was very sick, and I ended up in theatre. Due to various reasons I couldn't do it, and this pregnancy is like I have been cured. If FND is psychological, how can hormones in pregnancy stop symptoms?
I know I have written a lot of information and its all over the place, and I just hope some people read this and get back to me with advice.
Thank you very much for your time.