FND or finally not diagnosed

[Malbari]

FND sucks the life out of you. 6 years and praying for a miracle. FND is a cop out diagnosis when doctors don’t know what the real issue is. We need more research and more awareness.

[Sutta]

I’m inclined to agree. 21 years down the line change of diagnosis from MS to FND after my professor retired. Have a new Dr as we moved. She’s amazing told me I know my own body I do my best and not to worry about the title given. Just deal with the issues it creates. I do believe one day they will have to stop the mental health label, more and more people appear to be showing signs of structural damage.

More study’s and research are greatly in need

[Jantayl in reply to Sutta]

interesting - I was diagnosed with MS 21 years ago also after tests and Lumber puncture but no issues / symptoms since - worked and exercised normally. Diagnosed with PMR and GCA in 2017 - no link suggested. Now I have Bladder health issues. I do wonder if there is any connection to all these.

Do agree more study and research needed.

[Sutta in reply to Jantayl]

I’ve just read your question regarding bladder issues. I had ten years with a supra pubic catheter due to not emptying. After Botox treatment i returned to normal. However a few years on and I’m now the sameness you. Seeing FND is not supposed to cause any structural damage I find it very bewildering

[Jantayl in reply to Sutta]

My problem was discovered in June at what I thought was a routine consultation with Urology. I was retaining almost one litre! After 4 months with a catheter fitted, I am now doing ISC - self catheterisation. Ok so far but I do wonder how long I will be like this. Surely not for the next 20 years - if I live that long! And why has this happened?! Trying to learn of others experiences and trying to stay positive.

Thanks for your reply

[eviedotty in reply to Jantayl]

has your doctor looked at dystonia as a cause? this can happen with dystonia I spent 5 days in hospital with my bladder backed up to my kidneys and was very lucky not to have kidney damage...just a thought...

[eviedotty]

I am 20 years plus with generalised dystonia. In January 2019 the Neurologist told me there was nothing else he could do for me as all the baseline drugs used for dystonia had caused life threatening side effects. I had done my own research and brought information to him about the care plan used in America for these issues and he laughed at me. I went on after a serious episode were the arrest team struggled to unlock my respiratory muscles and had the family called in to say their goodbyes, along with the Resus Team putting me in a ward until the Neurology Team could come up with something other than a drug already red flagged to me as it would cause further damage to my heart or a heart attack that I wouldnt come back from. to put myself on the American Care Plan. Success was 100% in that the dystonia no longer threatened my life. There followed a long steady but bumpy healing period on this plan. Some of these bumps were scary but on reflection I decided through lack of trust in the Doctors who were meant to be caring for me to put myself to bed with pain management and ride it out. The next bump in the road totally floored me and scared me as it was seizure based so I did on this occasion contact Neurology and the responsible doctor referred me to a colleague. The back drop to this story is that I have 3 lesions in my brain all are from time to time symptomatic and or bleed and cause issues clearly linked to my symptoms. The new doctor made an appointment for me at the epilepsy clinic and then cancelled it and when asked why she did this replied because she could!...the day of the appointment I was sat in a hallway with white lights which are a major trigger for symptoms. The nursing staff one at a time joined the group of staff staring at me while I have something that looked like a seizure. MY son gave me the rescue meds we had with us. He went to the group of nursing staff staring at me and asked for water...went back and asked for a sick bowl and when I became more ill than I could cope with he asked for a nurse to come and see me. She in turn then got me a space away from the lights. Eventually I was taken in this state into my appointment and an attempt to do an EEG was made. A very short visual inspection was done with 2 comments repeated...this is very interesting and I didnt expect to see this when I came into work today...nothing other than this was said then the shaking was identified and commented on in a visual rather than causal manner and then having spent more than 4 hours in the wheelchair I was asked to stand up and walk a short distance and this was commented on again in a visual rather than causal manner.

I got home and it took a week in bed to recover from this physically and emotionally as the event was so severe it started to affect my breathing before the rescue meds kicked in. I have been intubated and bagged and spent 2 separate nights in HDU with this condition and never at any time has this ever scared me and this is down to the extremely high professional behaviour of attending staff who gave me every confidence that my life was safe in their hands. In this clinic I was beyond terrified and have been left quite traumatized by the whole event and that was because a member of staff told my son when he announced that if we were at home right now he would be calling an ambulance she said to him if your mum needs an ambulance I would call one and not be put off by what the doctors are saying. The doctors told my son there is no need for an ambulance there are plenty of doctors here but this is not the end of the story.

I then get a letter saying my condition is no longer dystonia it is FND. I have multiple MRI scans on record regarding the brain lesions and have even attended Neurosurgery and I also have an MRI scan on record showing pinched nerves and age related issues with the discs in my neck. So all of this has not been included in the assessment of FND.

I now feel sick to my stomach and havent left the house since this happened a few weeks ago. I am now sick to my stomach that I asked for help in a care plan that is progressing well and continues to do so but now has the complication of FND. The problem as far as I can see is that I put myself on this care plan and even though I sent journal updates weekly it counts for nothing they have set out to diagnose something that has nothing to do with what is actually going on. I would have died had I not put myself on this plan. My own Doctor is delighted with the progress but the Neurology Team are just less than impressed that I have kept them updated on progress on a weekly basis...were do you go when this happens as right now I am lost. I will add to this that years ago after the initial assault at work that caused and was the start of my problems I attended a physio who would put me through a physical exam then do the treatment then repeat the physical to see how successful the treatment was. I put myself through this same physical and find that the problem that I looked for help with does actually appear to be down to the pinched nerves as per MRI scan...how can medical staff justify doing this to any human being never mind one who is struggling with health problems when they know what they put on hyour records is there for all to see and is there forever...

[Evie76]

I hear you, it's the most airy fairy diagnosis I have ever heard. I joined the Facebook pages for support and I honestly don't relate to any of the posts. It's so frustrating isn't it