Is it FND...

My husband had unusual symptoms at the end of March 2021, namely tingling/buzzing sensation in both his thighs and felt 'wobbly' on his legs... fast forward a year, after seeing private Rheumatologist, Neurology and Neurophysiology, there has been no confirmed diagnosis, but FND has been mentioned. The last two weeks my husband has been clumsy, knocking things over, food dropped out of his mouth. he says he feels woozy and he is losing seconds of time. We approached 111 yesterday and his GP, no help so far! He does have a Neurology appointment at UCLH in July, so hoping for further updates then. He is very forgetful, his cognitive issues are a problem too. I go from shouting at him to mothering him, which doesn't help! I need to learn to be more patient.

His father died aged 83, after spending his life with a diagnosis of MS, but shortly before he died he was confirmed not MS, I wonder if there is a connection.

My husband is a fit, healthy 54 year old (or was until last year)

I would like to meet people going through, or who have gone through similar experiences. Is it taken seriously by GP's/hospitals, is it a misdiagnosis, what tests are carried out to come to this conclusion

[Froobydoo]

Hi. I have had neurological symptoms since February 2021. Mine started immediately after my vaccine. My rheumatologist has confirmed he has seen many cases. I was just wondering if this may be connected in some way? Hope he finds answers and gets some relief soon.

[Hidden in reply to Froobydoo]

Thank you. He is unvaccinated, thankfully and Rheumatology consultant did ask this question too!

[Hidden]

Hello Ma'am,

From my experience, and that being half your husband's age. The diagnosis of FND, is... In my opinion... A get out of jail free card. I truly believe we are incapable of fully diagnosising what is actually wrong with us that have FND. This is simply put, the definition of what causes FND is skewed, doesn't fit most people with it, and with the prolonged symptoms that slowly destroy almost every aspect of your life, there is no way we fully understand it.

I have met very few people that therapy, CBT, and other forms of these have benefited and helped. Again, take my over all skepticism as somebody who has had FND for almost a year now and has had no relief, I lost almost everything, was nearly homeless from it, and by the skin of my teeth lucky to have found a job that doesn't require me to walk.

My best advise... Don't beat yourself up for what you are doing. I'd say, yeah yelling at your husband isn't good. But in reality, again speaking from me... the mood swings... The amount of loss.. The horrid perception that develops for life. It's very hard for people with it to communicate about it. Why? Because it all genuinely sucks. I would not wish it on anybody.

With that, I'm not saying put yourself in his shoes. But do your best to understand the amount he has lost, will most likely continue to use, and do your best to find balance. With this balance, don't neglect YOUR emotions. Your emotions matter just as much. And the stress you have of not only your own personal stresses but also watching yiur husband lose all of what he used to have. I can't imagine this.

Take time for you. Go to therapy if you can. Don't be afraid to tell your husband your feelings and communicate. It's just as hard for him as it is for you.

With that, you are doing a good job by asking, looking inward, and doing your best to find a balance. Be proud of yourself for that. Your husband I know for a fact appreciates it.

Stay strong, you have this Ma'am.

Best,

Matt

[Hidden in reply to Hidden]

Thank you for your kind reply. We are going yo a Neurology specialist on London in July, but he doesn't hold out much for specific answers., especially that his father received a diagnosis of MS in the 60s and died age 83 being told he didn't have MS. Neurology is a minefield! It's frightening not knowing what to expect too. Will this be our last year of 'normal' life?? Will he be able to drive.. enjoy socialising. My mind is spinning. Again, thank you.

P.s. can you still look for answers from others?

[Hidden in reply to Hidden]

See, I don't know how to answer the question of when normality will happen. My life has yet to go back to normal. I had to redefine normal. It's a sad part of life for me, that I don't really think about, or try not to.

Normality will happen when he makes his own new reality sadly.. And that takes lots of strength mentally and not letting your upset wear you down...

As of now, no, I just accept my life and not really seeking answers anymore.