I was just wondering if anyone else has been told they have fnd even though they have several demyelination spots on brain as I feel no one truly believes me when I tell medical professionals about problems with fatigue and movements it’s like I have brain freeze sometimes as I can’t get my body to move when I want it to and I just sort freeze up and got to get my partner help me moving yet the medical professionals don’t seem to believe me and I feel that I’m just stuck in limbo with this as I saw a doctor who said I have ms but ms is like a spectrum and I’m on the (good) high end of the spetrum, I saw this doctor over 2 months ago and hadn’t received my letter from the consultation so I rang the office and apperntly I’m not going to be getting a letter from this doctor and the office said it’s not as clear cut about me having ms that I will be having another mri in the summer, I feel it’s so unfair that I’m not going to get a letter from the consultant I saw 2 months ago and basically being stuck in limbo with no real answers about what is going on and what the consultant has to say about my situation.
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Gemmah87
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It sounds like it is MS if they have seen demyelination on it. Most people have small white spots on MRI, usually like tree rings 1 per 10years of life. They may not wish to diagnose you depending on how much demyelination they can see. There is little correlation between the amount of demyelination and symptoms in MS, it depends where they are. You may have some signal re-routing and that's causing FND like symptoms, but it's coming from the MS damage blocking message pathways. FND is sometimes diagnosed wrongly, like any illness. Which can be frustrating.
Have you tried asking around a MS support group? There's a lot of help and research out there.
Good luck, and whatever you are told FND is biology not psychology.
I have brain lesions with an FND diagnosis however every third medical person I see states MS before they see the FND on my chart. Apparently the demyelination/ lesions are on the wrong side even though I have all the symptoms. I’m looking at it like MS is permanent and FND can come and go and thankfully I had a great rehab team early to help learn triggers and how to cope with them
I hope you get the answers you need and most importantly the right help.
Hi there. Why are we told it’s not biological then and sent for psychological treatment? Struggling to understand. I’ve also read an article on an MS site where the author was talking about her symptoms frequently not matching the lesions and where they were sited, and her doc explaining that that was because often the damage is in the grey matter - often doesn’t show up on regular mris.
I think it was because that for a while FND was thought of as "psychosomatic" and counselling was only thing available that could help. Before people were put though fMRI and it was realised that it is a neurological condition. There are many who won't actually recognise this, but thankfully the FND movement is expanding.
Personally I think it helps every health condition to look after your mental wellbeing. When it comes to heart disease loneliness is more dangerous than smoking, so it's not just us. Counselling can help some people more than others, but it depends how bad the condition is and how present are the stressors. Digging up long settled stress events could potentially make some people worse. There seems to be much counting of successes and not the failures. Decreasing stress can just tip some people back into normal functioning but with a very low success rate of up to 10% compared with about 70% from the FND specialists.
I've been reading more on vitamins too. Stress can increase the uptake of the brains resources and so make neurological symptoms worse. From personal experience correcting my vitamin deficiencies has meant that I can handle stress well and it significantly lifted my mood as well as increasing my energy levels and concentration, my movements are nearly back to normal. Not cured yet, but oh so close I can taste it.
I've just started a book on vitamins "New Research and Developments in Water-Soluble Vitamins, Vol: 83" Edited by Michael Eskin - It's available on Kindle as well as hard back. I've only just read the chapter on thiamine, but it looks really useful. Quite a few mentions of "previously diagnosed with a psychosomatic illness" seems to come up. All evidence based research of both the early days of vitamin research as well as up to the date it was published.
Thiamine deficiency or insufficiency is supposed to be behind many chronic illnesses including MS, Parkinson's, diabetic neuropathy and motor neurone disease. The most efficient form of thiamine is allithiamine as it has a chemical tail that allows it to go straight into cells. It also helps it cross the blood brain barrier. I'm thinking of giving it a go. Maybe it will help. If I can't utilise B6 properly then maybe I have problems with thiamine too. I'll post something if it does help. I know allithiamine can have a "paradoxical effect" where symptoms initially get worse before they get better which can last for a few weeks. I hope I don't get that.
Anyway I shall stop writing war and peace - again. It was interesting to know about MS and grey matter.
I've also had a lesion on the cerebellum right superior pons and have thinning of the grey matter and they put all my symptom down to that but i still get the Fnd diagnosis
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