I have noticed as the morning goes on and by the end of the afternoon my walking and balance is a hundred times worse than it is in the morning trust me it is crap when I wake but even worse I walk the dog totally exhausted balance and walking a joke and I have slurred speech I didn’t realise FND make you go like that as the day goes on or is it Ataxia but the consultants say FND because it is easier for them?
My issue is I don’t know where to go as now FND is on my record the doctors shove you out the door any consultant just say FND and don’t listen to you?
My family and friends are watching me go down day by day they just say the doctors know best they won’t fob you off
Since I was in hospital with stroke like symptoms and a neurologist come in and within 20 seconds said you have FND all the doctors and consultants all say you have FND all because it is on my record even a junior doctor at the hospital apologised and said he should’ve of said that just like that I am afraid I am tarnished with FND all because of that bloke and my GP said it means it is all in your head and it is my own fault so I won’t be going back
Mine issues all started after COVID vax. I have ataxia amongst other issues which come and go. Slapped the fnd diagnosis on me after one MRI and bloods were normal. I find mine gets worse on doing something physical or when I've overdone it. Is your balance worse when you shut your eyes?
It's the vaccine no doubt. I ended up in hospital 3 days after with numb right side, stiffness in my leg, I collapsed twice, had full body spasms and couldn't walk without a frame, I had severe pain in my back, breathing problems.. I recovered to around 90% then I started trying to exercise and get fit and didn't realise that exercising was causing more symptoms..pain, weakness, and then I had another massive relapse last October with same symptoms..I recovered again but to around 85% so more of a deficit this time. I'm left with numbness, tingling on right side, I get weakness in my legs, fatigue, off balance, headaches, weird sensations, lower back pain, im exercise intolerant now but still remain active as much as I can. I still manage to work but I get tired easy. I only had one of the toxic jabs. You sound really bad. I'm on a privateFB group with over a thousand damaged people all with similar problems..they know what is happening but still continue to push the toxic shit
Wow thanks for that it started on my left side but spreading to my right side my right hip is so painful when I get out of a chair so stiff
I can fall asleep so easily now
I can’t believe what you have been through that sounds horrendous I feel for you for what has happened I have had a few falls a few times my left side just seizured up for a few minutes my face then my arm
When I am having a bad day my dog will not leave my side she watches me like a hawk,
Our symptoms are very similar please keep in touch I am not on FB anymore I come off it I can’t deal with it now my head won’t let me
What does our future have in store for us with no help help from the nhs and doctors I fear the worst
Just wanted to add, eating well and taking vitamins will help you a little. I take vit d, vit c, alpha lipoic acid, magnesium, a probiotic and co enzyme q10 , not sure if they are helping. Try and stay positive even though it's difficult. Do things to take your mind of your symptoms.
Do you feel like your immune system is racing? I calmed mine down quite a lot with a course of hypnotherapy. I had a decent summer symptoms wise but soon as I have a virus I get more symptoms. If I overdo it I get more symptoms. Constantly focusing on our symptoms can make them worse too. I've tried meditation to calm nervous system down too. I don't know what the future holds but you aren't alone. There are many of us. Stay strong too 💪 x.
Morning Denise I suffered a awful lot in the summer any bit of heat does me in I can’t stop sweating my eyes squint in any bit of sun,
My immune system is not as good at all these days
Just feel totally exhausted I took the dog at 5 am this morning started of about 70% got home gasping for breath and walking and balance awful I had to stop a few times for going light headed I thought going lightheaded is low blood pressure but I have very high blood pressure which come on after the jabs,
Now borderline diabete when perfectly healthy before the jabs,
I have been so lucky with my health I nearly died with appendicitis I did for 5 minutes but that was the only time I went to hospital then we had the jabs I am always at the doctors and hospital strange that
Hope you have a good day and got some sleep my head was really bad last night on one side still got it now
I don't know if the symptoms your are having after the vax are akin to those of long covid .but it might be worth investigating. Drs might take more notice of long covid.
I have been told that Ataxia is not a stand alone condition. It's a symptom of something else. In your case, sounds like FND. You're entitl d to second opinions from any Dr, but in my experience, as soon as the Neurologist finds no organic cause, you are labeled as FND and asked to see a Phycology professional.
Hi I am still waiting to get an appointment through for Sheffield Ataxia clinic I can’t chase it up till the end of next week according to the letter it says if we haven’t contacted you by 19 April please call us to book an appointment
I started with FND in 2017, for no reason. I had 1 year of tests before diagnosis. It affects the left side, I veer to the left when walking plus have myclonic jerks, full body jerks. I'm losing fine movements in hands, only use a fork, I can't even hold my youngest grandchild. I had stopped cooking because of using a knife is difficult, but we have a very sick daughter in law, so I'm making meals again. I'm numb down left all the time, now starting on right side, I have slow speech, not slurred. I have never been judged by medical staff for my FND. My gp treats the symptoms not the condition. I am worse in stressful situations and can't go out after a certain time of day. When I'm tired I can barely walk. I'm under a lovely physiotherapist who is working on simple exercises to encourage my brain to use both sides. My neurologist said treatment in hospital not available here in regional Australia, plus I'm my husband's carer. I'm still allowed to drive in town. Ask some physiotherapists near you if you can afford it. There are some videos online I've seen. One I do is marching, it's simple but do you think I can coordinate my hands and legs. Start small. Take care. Moni
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FND
waste of time
just diagnosed with FND
