So I have had a long battle with getting to the bottom of my problems and on Tuesday I finally got all confirmed.I have been having symptoms for around 6 years and a lot of GP appointments! I have been back and forth to the doctor where I probably had a full blood count once per year (all okay) a urine & stool sample once per year (all okay) amongst many visits for other issues such as extreme fatigue, brain fog, pins/needles, back pain, chest pain, limb weakness, headaches, blurred vision, skin rashes, memory issues, speech problems, black outs, dizziness and more!
I was put on depression tablets which helped with my mental health but the random symptoms were still ongoing. It wasn't until I had second black out that they took me seriously and gave me an MRI scan with EEG.
After 2 years on the waiting list for those tests, I finally had them done in Jan 24 and got my results on Monday!
They said all was okay (no surprise!) And that I had got FND. They have now refered me to the FND department at my local hospital who will then give treatment plan and take it from there.
For 6 years I have felt like I am going crazy!ade to feel like it's all in my head and fobbed off a lot! Finally I can make sense of all the crazy symptoms and how they all link - the brain!
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Kee10
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Hello there!Wow that's a long journey, how are you feeling about the label now?
I was diagnosed in January after 7 months of shenanigans and can relate to many of your symptoms. I was also diagnosed with M.E. find the fatigue exacerbates my FND experiences.
Taken it as my bodies way of telling me I need to slow down in life
Yes I have all those symptoms and I was referred to see Neurologist last September 23 and still waiting to see the Neurologist for FND diagnosis and I am in terrible pain every day 24/7. Also got symptoms of Sjogrens syndrome the Doctor said and my Dentist has said. They spotted it 4yrs again but didn't fit the criteria for Sjogrens syndrome but now it's a lot worse than then. So they are testing me again blood tests for Sjogrens syndrome 17th May. If blood tests results are positive then they will refer me to specialist at the hospital.
Oh no. What are your symptoms of sjogrens syndrome? Since I last posted I have begun to have seizure like attacks, which have been confirmed as non epileptic. Do you have seizures or convulsions? Also had a few drop attacks where my legs just go weak and I fall to the floor.
I had non epileptic seizures since 2020 and had eye seizures too yes I had few leg where they suddenly twiches and I have fallen though I cannot walk just suddenly went from walking on a walking stick to not being able to walk just like that one day I was still walking on a walking stick next morning I couldn't walk at all because I couldn't move my both legs they are heavy like tree trunk even though I not a big lady but my legs weigh more than my whole body. Sjogrens syndrome is different to FND symptoms as Sjogrens syndrome it's the to do with the glands sk I don't get symptoms like my roof of my mouth feels sticky like treacle tongue feels like sandpaper and very red and sore and nose throat and mouth is really dried out moisture and dry skin etc and swollen glands dental problems and it effects the saliva and moisture and attacks your healthy glands to with moisture and infections take lot longer to go away and it's a autoimmune condition. My FND symptoms are different from the Sjogrens symptoms. It's still awful to have though.
It sounds it bless you. I'd not heard of that condition before. Hope you get to the bottom of it. How is your walking now? I had a period of having jerks and seizures everyday for a week, then didn't have any at all the week after. Then randomly here and there. It's so strange isn't it! How it just happens for no reason and then your okay afterwards?
Sjogrens syndrome its to do with the glands not working as they should so it dries out your moisture like your eyes mouth throat and saliva and your skin and wherever your glands are place in your body to stay lubricated but if the glands are not working properly its attacks your moisture and dries it out like if you kept forgetting to water a plant for so long and it would be just dried totally out and then starving for to be watered so in out body if we have Sjogrens syndrome then our tongue becomes very red red and sore and feels like sandpaper and when we touched the roof of our mouth with our tongue the roof of our mouth it sticks on the roof of our mouth like as treacle would even without sticking our tongue there our throat begins to sticky like treacle and it causes gums and mouth to become sore and painful and ulcers and lip sore with sores on our lips and dental pain and also nose feels sore and very dried out and eyes dried and sore and stings. It's a autoimmune disease and attack the healthy tissues of the glands. Very awful to have. The only thing because this you don't get colds or flu and viruses. You are more prone for infections and they take longer to go and when one infection gets better you can get another one you can get one after another and then you may not get infection for certain amount of time and end up getting one just out of the blue. It's strange not having any more colds and things. Sometimes I rather have a cold because at least I have moisture better than having no moisture to feel moist inside my mouth especially my mouth.
I have these same symptoms as you and I have had these crazy symptoms for 4yrs and I have been referred to Neurologist still waiting to see the Neurologist on waiting lists since last September 23. I have not got the diagnosis yet but I know that I have got symptoms of FND from what I already know the symptoms of FND so when I do see the Neurologist and I get the diagnosis of FND I will not be surprised if they say its FND. I have learnt a lot about what the symptoms of FND are.
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