Downward Spiral

[Thirza]

I was told by a professor of neurology that I had MS. He also told me that there were local support groups but not to go to them as there would be people there who would be much worse than me and it could be depressing. This was 33 years ago. About 15 years ago my diagnosis was changed to FND on the results of an MRI. His instruction to my GP was to remove all mentions of MS from my medical records. I have had bilateral foot drop for about twenty years and a neuro physio referred me to the local hospital where I was told that my feet and ankles were in such a state that I needed carbon fibre AFOs. As many of you know, a diagnosis of FND means symptoms are not believed and support is almost nil. I also lost all of my benefits following a PIP interview. My lower legs and arms have atrophied, the pain and fatigue means I have to plan and limit activities. I have read many similar accounts on here and I really feel for all of you.

[210272]

Hon Prof Stone has made it clear that a diagnosis of FND/Conversion Disorder should not be made on the basis of a normal MRI alone so I would question why this seems have happened in your case. If you were misdiagnosed with M.S. for all that time then you have grounds for compensation, as far as I can tell, although the misdiagnosis may be tricky to prove if your GP removed all mention of your M.S. dx from your records, as per your neurologists instructions. Since you're in the UK I'd use the neuro symptoms dot org feedback system to ask for advice about the way your dx was changed and if you can claim compensation for the misdiagnosis of M.S. I know the site is not endorsed by the NHS but you may find it useful for this purpose. I am very sorry to hear about your additional health issues and your loss of benefits.

[Jillymo]

Stories of this nature make me so angry.

I was also given the label of suffering with FND which personally I feel is crap and a cop out.

How was your MS diagnosed > Did they do brain scans and lumber spine investgations ? If I were you I would grab as much proof of the diagnosis as possible by calling for records of past examinations, tests and scans as proof, 23 years of records is a lot to destroy.

How devious of the consultant to request all referal to MS be deleted. I think if it were me I would be requesting a second opinion. Why have you waited 15yrs before querying ? I would have been livid.

I was lucky my FND diagnosis didn't get put on my paper work by other consultants and didn't follow me like a bad smell. I am to see a neurologist in Feb and eager to see if he goes along the FND route.

We have started a new year and benefits are often reviewed so get as much evidence as you can. It took many years to get my auto-immune diseases diagnosed yet it took a neuro I had never seen before 20mins ro diagnose FND when he should have been screening me for a stroke !

[Thirza in reply to Jillymo]

Hi and thank you for your reply. Yes, I was angry and yes I queried the change of diagnosis which was a clinical diagnosis. My health suffered from my efforts and I eventually decided to get on with life as best I could. I certainly don't regret doing that. My recent comments were only made in support for all the other people who are going through a similar process; just to let them know that neurologists started doing this many years ago and sadly it seems to be on the increase.

Wishing you all the best for 2022.

[Jillymo in reply to Thirza]

I know only too well how challenging it can be and when so unwell it can be very draining. You are correct I have found neurolohists the worst to deal with and dreading my appointment next month and the outcome. I am pleased you have managed to move forward but the label of FND can be quite disturbing especialy if a miss diagnosis. Often due to the diagnosis more serious ailment get overlooked.

You take care and I wish you well.