I'm so bloody frustrated. Thats my 2nd opinion neuro washing his hands of me, so FND it is. I knew as soon as i walked in that regardless of my answer to 'how have you been' he already had made his mind up and was just working up the courage to tell me.
I dont accept this diagnosis. My symptoms are repetitive and predictable. Came on dramatically within 20 mins!!! of the covid vaccine and return every time my immune system is challenged. My symptoms are mostly resolved with anti-cholinergics however according to the neurologist this can't possibly be working and ive not to take them??? I am beyond angry.
Now i'm going to have to go private for any further investigations 😭😭😭
I've asked repeatedly for a referral to immunology but nope, its FND. Get on with it. Wahhh.
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Bumblebee004
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I know exactly how frustrated you are because the same happened to me. Nurolgists can be so bloody minded and what they say they stick too.
Like you I knew the moment I stepped into his consulting room. I greated him with a pleasure to meet you ( not ) he replied with a shallow like wise. He then asked what I were doing there and went on to ask what I expected from the consultation. Had I have know what he was going to write in his consultation letter to my Gp ( FND ) I would have replied a bloody miracle.
I had been refered for B12 nurological symptoms. The rudy man wouldn't even let me explain my symptoms and stopped me every time I went to speak. He was a prize 🐷 and I have now opened a case with pals. Ask who you saw of proof and copies of his findings of FND. I bet he cant provide you with any, mine hasn't been able to as yet. He didn't even have the ⚽s to discuss FND with me !
This is labelling of patients without doing the relevant tests to ease up the backlog of patients is not acceptable. I listed a petition for signing about this very thing a few days ago.
Lets hope it reaches its target to stop this unfounded labelling of patients in the future. 🤬
Nice to meet you congraz of standing up for yourself and standing up to these doctors i know its not easy and it hurts when the door is slammed in your face.
It might be worth complaining to the pals service at your local hospital and show and tell them about your case and your findings and how dismissive your your neurologist had been towards you and not listerned to you they may may be able to false his his hand by referring you.
Maybe worth a shot before paying out on going private.
Sorry to hear your frustration. There's a lot of idiocy out there and misinformation about FND. Anticholinergic would help FND as the symptoms are caused by a build up of a neurotransmitter glutamate. Glutamate is co-released with acetylcholine, so it would help reduce the build up. We are sometimes prescribed tricyclic antidepressants which help, probably because of its anticholinergic properties - but it just adds fuel to the fire of the "it's all in your head" brigade because they don't get the neurochemistry going on (and yes, some of these people are neurologists in top positions at some prestigious universities - they are still wrong).
It is immune based hence the 70% women, 30% men split that is common in a lot of auto immune conditions. Most people have an onset with either an infection, injury, inflammatory condition, allergy, asthma etc. It can be caused in some in psychological trauma, just like when some people are very stressed they come out in hives, only this is worse. Not a sign of someone being "stressy" but a sign that their body and brain are not handling the biological substances released when we are stressed. A case of there is something underlying, but not diagnosed, can be histamine intolerance or sulphite intolerance which leads to histamine intolerance. Histamine is a cholinergic, hence more glutamate, various other stuff is released as well various interleukins, TNF-a.
Mine was a combination of sulphite insufficiency (AKA asthma - but it's not just a lung problem) and thyroid antibodies that also wiped out my B12. My problem hasn't gone away fully, probably because it took me years to find an answer. My first neurologist was a complete ass and then I found Prof Edwards, but even he didn't have all the answers, they didn't back then, but he did know I was ill because I was ill.
They know from recent studies that interleukin-6 is high in people with post covid syndrome and some of this covers functional symptoms, and FND. IL-6 is released to rally the immune system when we have an infection. Why some people make more than others isn't known.
Vaccines can make people with FND worse, usually only for a few days, so it's not surprising that this can cause an onset in some. It could be that there's some underlying problem that you have, rather than the vaccine. Vaccines are designed to produce an immune response so that antibodies are made.
Try FND Hope, they have patient advocacy and legal help if they can't teach your GP the error of their ways.
You could look into histamine intolerance and sulphite intolerance. A diet change should help within days if it's going to. There are also supplements to stabilise your mast cells vitamin D, vitamin E, vitamin A. B12 helps break down histamine in the brain and inside cells and DAO breaks down the histamine outside cells with P5P as it's coenzyme to make it work better. Thiamine as allithiamine is useful, but do read about the paradox effect if you consider it.
Gut issues are also a common factors that put people at more risk. IBS, gastritis, "GORD", even tendency to constipation or loose stools. Sometimes you may be itchy, get the occasional hive, suffer from allergies, even just seasonal rhinitis. Often things that seem minor can be clues. Gut and immune system are good places to start looking.
It's a matter of getting a "you" shaped solution. There is no panacea.
I hope this has helped, if you are still reading. xxx
A few minutes after 1st Covid vaccine, I felt warmth in my foot and that heat then spread throughout my body. I also had irregular heartbeat and got a little disoriented and flushed. It lasted about 20 minutes. Same thing happens to me when I got the ct scan contrast dye. Im scared to take anything now. Have had FND for over 4 years now
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