FND

[Carathomas]

Hey everyone I've been suffering for years after I gave birth to my baby boy 2002 been in and out of hospital been told it's all in my head a liar till April 2015 were I suffered cluster of blackouts and fits the first one walking through to make a cup of coffee blackout smashed my head on the cooker fitted then second day went to the toilet blackout feel of toilet smashed my head against the sink wet myself fitted again got to the forth day still didn't go to hospital as I was scared that they wasn't going to help me forth day couldn't get up of the floor every time I tried to get up to look after my babies felt as tho I was going to pass out fith day woke up couldn't move my neck felt it was going to break being level 3 in care I new that when you can't get your neck down to your chin then something serious is wrong ambulance came took me straight to a&e were a doctor kept pulling me around saying it's just a trapped nerve and was sending me home my dad came in and asked for a second oppinon another doctor came and sent me for a scan were they found s brain tumour and went for lots of other test lumba puntures scans bloods then put straight on to Nero ward were they had also discovered I had FND I'm finding FND both mentally and physically hard work physically suffer pain from bad pains in my head neck back pelvis arms legs ankles so really struggle with day yo day life mentally struggle with memory holding and restoring any information swallowing my food is sometimes very difficult sleeping most night I just can't sleep in 2002 I couldn't walk was on crutches for nearly 2 years it's like I had to learn all over again how to walk bless you all if you have any questions happy to help I used to have a wounderful career as a teaching assistance until I went down hill have bad muscle spasms as well legs arms and in my face also get a lot of pins and needle in hands and face I cry a lot due to feeling very depressed suffer with anxiety I find isolation is the worst part of FND and that there is know support for people with FND and worse more know Funding great x

[VivienneWaterworth]

Hi. Wow, you have really struggled, haven't you. I hope they are able to deal with the brain tumour and that it doesn't leave you with any other problems.

It's really unfortunate when the medical people forget to treat you medically because they get so wrapped up in believing that you are deliberately creating these symptoms (as if!!!). Unfortunately there are still too many doctors out there who haven't yet caught up with the latest thinking on FND, but it seems that you might finally be getting the care you need.

Thank God for your father insisting on a second opinion.

I'm not surprised to hear that you have FND as well as a brain tumour. I have noticed that a lot of people seem to get FND when they have another medical problem that isn't diagnosed in a timely manner, and so the brain seems to throw out a nice display, 'apparently' in a desperate attempt to get the correct attention, diagnosis and treatment that everyone is entitled to receive. e.g. people with undiagnosed epilepsy can sometimes also get FND seizures. Unfortunately when there is more than one thing wrong, diagnoses can often be hard to get and medical help can be delayed

(I'm just going through that myself, with a dr panicking about me having cancer because he found a weird lump in my abdomen, so he didn't notice that I have gallstones causing severe pain, and I need proper treatment for that as well as find out what the lump is.)

I still don't believe that we have any conscious control over symptoms, what kind we get, or when they will appear. When we are stressed, it seems that our symptoms might get worse, but if we get too stressed, then the symptoms can sometimes stop until the pressure is off.

And of course there are people who get the diagnosis of FND and often end up with a completely medical cause for all their symptoms...as you apparently have had for far too many years.

Just take one day at a time and see where that leads you. Meanwhile, check out:

- neurosymptoms.org (by one of the best neurologists in the world for FND)

- fndhope.org (the best patient advocacy group).

If you can, check out some of their Facebook groups as well, as you will learn a LOT from chatting with others and asking lots of questions.

[Default_1 in reply to VivienneWaterworth]

I agree with all you say. I have kinda been given a diagnosis of fmd and I also have MS. I too believe that doctors get so caught up trying to treat text book cases of so many things that they forget to look at the body and person as a whole.

Today I have managed to wash the dishes from last night, make a smoothie and but some jacket potatoes in the oven. Not sure if I was trying to prepare lunch or dinner but it is now 4pm and I've crashed! My daughter has just taken over to finish the meal while I rest on my bed.

I'm hoping that I'll find energy to take a shower and get dressed or maybe by then it will be time to get ready for bed. Who knows?

What I'm trying to say is that we all show amazing strength to just get through each day and we all need to keep our heads up high and not let this fnd diagnosis label us as anything but phenomenal, courageous beings!

Best wishes to all

[Lawley3]

Hi, i was wondering how you manage your condition with the children? I have young children myself and it is so difficult mentally and physically because my children are so demanding. You have suffered a long time and this condition is so isolating it's awful.

I wish you all the best

Louise

[Carathomas in reply to Lawley3]

To be honest my children are the thing that keeps me fighting against this awful illness FND they are the reason I get up move fight and get through my painful day I put a great smile on and just get on with it behind closed doors without my children knowing yes I cry my eyes out think god what have I ever done to deserve this and same again I just remember on the back of my mind my babies need me and that life goes on I can just say it a cruel word I do have a lot of support from family especially my poor mum bless her heart I can't even imagine what or how she copes seeing her daughter in this amount of pain Thankyou for all your replys and again I'm really sorted if there is any spelling mistakes that's FND for you X

[Lawley3 in reply to Carathomas]

I completely agree with everything you say. The children are our reason for fighting through this condition. The happy smiles when they are around but behind closed doors the tears flow. I too have a lot of support from my mum she has helped me through so much, last year being the worst for me, my mum witnessed me having awful turns each day and eventually spending time in the stroke ward where I received my fnd diagnosis. I understand everything you say. Our children are our world and our reason for never giving up no matter how hard it gets..

Best wishes x

[chelz1994 in reply to Carathomas]

Cara - You say you've had this illness long time has it ever stopped u from becoming a mum me and my partner was trying then came down with this fnd and I'm scared that I won't be able to be come a mother of my own my brothers kids make me get up and do things day to day but I do have to ask for lot help along the way I am only 21 but was hoping for a family in life but scared this illness will stop me only just been dignosed with this in November 2015 from demanding there was something not right with my body in February 2015 it's whole left side my body any advice .. By the way I'm glad your able to cope with it must be a very strong women xx I'm already crying and stressing over it got great support but scared won't be able to make a family with my partner in future xxx