Dear all, I'm writing this post so hopefully the person who was so negative to sunshineali reads this and will hopefully understand the pain they have caused by their own inconsiderate remarks. It's taken me a long time to write to anyone or join a website, if I got negative feedback like sunshineali has i too would be inconsolable. We get so much negativity from professionals that to get it on this website is just not acceptable. If the person who wrote to sunshineali so negatively reads this they should be ashamed and leave this website. I'm angry now that anyone could do this on here where we all come for help, advice or just someone to listen and understand what we are all going through. Thoughtless remarks can destroy us so quickly. Lisa

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  • Much love Lisa β€πŸ’ž

  • And so say all of us x

  • Oh dear. I didn't see that comments that you are referring to but I'm very sorry to hear that. Negativity is not very helpful at the best of times and is often very detrimental to people with chronic illness. There is so much of it in our lives that we are not able to avoid, it seems cruel to create yet more for people who are already suffering. Makes you wonder why people bother joining forums like this if they can't be at least polite. As my mother always says, if you can't say anything nice then best you don't say anything at all!!

    I've been looking through your posts Sunshineali and I can't really offer much advice. I'm fairly new to a diagnosis of FND myself, I don't seem to suffer in the same way you do and FND isn't actually my main health issue, for me that is ME. But what I can say is welcome to the forum, the people on here are usually all very friendly helpful and supportive. Seems you've already had some lovely replies from some of them. I guess in life you always get some that struggle to empathise or perhaps they are just having a bad day. Either way please don't let it put you off. If you after support you are in the right place so please don't let one bad incident put you off.

    Gentle hugs, :)

  • Hi Margret,

    Thank you for your lovely & encouraging words xx my last neurologist only saw me for 10mins and diagnosed me with FND. I'm currently waiting to see a new neurologist as my notes have been translated from Spanish to English. So I'm waiting for my MRI also EEG. I'll be going through BUPA so hopefully faster. So I can get the correct diagnosis. Some other conditions have flagged up since my notes have been translated.

    Again thanks for your kind words and to all my friends on here I sincerely do value every single one of you!

    Also Lisa thank you your kindness has shone through β€πŸ’•πŸ’žβ€

  • Mmm. Your experience with the neurologist sounds familiar. I too was in the room about ten minutes with him. He shone a light in my eyes, asked me to follow his finger, touch his finger then my nose with the tip of my finger then watched me shuffle about 3 feet across the tiny room to 'assess my gait'.

    Then he pronounced 'it's not neurological, it's functional movement disorder, but I'm going to send you for an EEG'. So in other words he had decided it's not neurological BEFORE sending me for the brain scan. I didn't bother explaining to him that my main condition is ME which IS neurological and has been considered so by the World Health Organisation since 1969 so how does he not know that the twitches, spasms and jerks are not related to that.

    Then he mumbled something unintelligible about what FMD is but said it's too difficult to explain and gave me the John Stone website to look at. And that was it from him, I was out the door and signed off. No treatment plan, no explanation, no help whatsoever.

    So yes I do totally understand your frustration. But that is partly why I hope your one negative experience doesn't put you off as you are far more likely to find not just support, but useful helpful information on support sites like this. I have ME, fibromyalgia, restless leg syndrome and now apparently FND (or FMD, whatever) and for each condition I get far, far more help from support sites populated by fellow sufferers than I do from any medical person. So please stick around, I'm sure it will help you to know you are not alone.

    Take care, Margaret. xxx

  • Hi Margret,

    Oh my yes exactly the same kind of examination. He said my muscle tone was good. Errrmmm I was fully clothed πŸ™„. He must of had x ray vision πŸ˜‚. Can you not ask to be seen by another neurologist? ME itself will completely drain you! Also no medication πŸ™. No plan same here. My family doctor is better but I had to beg for pain relief as the amatriptaline itself doesn't work. The neurologist did say I had weekness on my right had side tho! Wow he got that bit right. πŸ‘. He wasn't listening tho. He said I didn't like the word depression. I've had depression before. But I'm not letting someone who say me for 10 minutes max write me off. Neither should you please try and find a good family doctor if you have one close that will listen. Then get a second opinion your symptoms are real your pain and fatigue is real also frustration is real.

    We're all here for you πŸ€—.

    If you ever need someone we're here. Have you got any medication at all? It's ok if you want to keep things private.

    I'm currently on amatriptaline that's to supposedly stop the nerve pain. Then I take tegretol to stop sezuires and relax my muscles. Then I have co-Dydroamol for pain. And others for bed time xxx

    I'm still up during the night in pain. My husband a big guy if he took one of my night time pills he's out for hours. I'm only 5ft and 115 pounds.

    Try and get yourself a second opinion. You have a lot of different symptoms and you want someone who's going to listen.

    If I can help in any way please let me know.

    Lots of love ❀️ Ali xxx 🌞

  • How annoying, I wish doctors would just say sorry I don't know rather than coming out with guff just to sound as if they know better.

    I was perhaps being a bit disingenuous to my GP. She is a lovely lady, she does listen (big tick for that) and is very empathetic. Trouble is I'm not entirely sure if she thinks ME is physical or psychological. I think, and hope, it's the former. But unfortunately as she is NHS and the official NHS line ignores over 9,000 pieces of peer reviewed research that demonstrates it is physical, there isn't much she can really do or offer whatever she personally believes. For me it tends to be all the other so called specialists that don't understand.

    Yes I am on meds. I have Lansoparozole for acid reflux, low dose Duloxtine which is supposed to be a pain killer dose (not convinced it works though), Tramadol and Paracetomol. But that is it. To be fair though I have problems swallowing and have to take soluble, dispersible or liquid medication so she is limited in what she can offer.

    The only other thing that NHS offer for ME is CBT and GET which are at best useless and at worst positively harmful for ME. The NHS really really doesn't understand the condition despite the mountain of evidence out there. But again to be fair to my GP she tends to try and steer me away from CBT and the only reason I've tried it was because in desperation I wanted to.

    So overall, although there is not much my GP can do to help the truth is I would be in a much worse place if I didn't have what support she is able to offer.

    Not sure I want to bother getting a second neurologists opinion just yet. Personally I think my symptoms relate to my ME not FND. But part of the problem is, the research so far says most tests show negative results because they are not in depth enough. We have enough problems trying to get the NHS to do full in depth tests for thyroid issues, lyme disease and even vitamin deficiencies as it is. There is no way the NHS is going to suddenly start providing the kind of in depth testing that ME requires. Not just yet anyway, though there is some hope on the horizon with current research in the US, Norway and Australia. 🀞

    Thank you for your kind words and please know I am always here to help too if I can. Even if it is just moral support.

    Take care. Margaret. xxx πŸ€—πŸ˜˜πŸ€—

  • I agree Margaret, they do not go in depth with regards to diagnosis. I must add though I think this is a postcode lottery! You have to fight for even private appointments. I'm being referred through my husband's work insurance company so thankful for that. I wonder if anyone on here has asked for any specific tests to be done and actually got them in any country?

    Also as you say you think it's your ME are you in a support group and if so has anyone had any tests that you would like to have.

    It's frustrating because all our symptoms differ from each person. That being said we sometimes do sound as if we can identity with others. We should be treated as individuals and not categorised. But that's just my own thoughts.

    I'll share as I go along. Blood results come back today.

    I'm happy that you have a good GP that does listen. Although they can only do so much and most of them admit themselves that they know very little about ME & FND. Well mine does anyway and he's lovely.

    Much love ❀️ 🌞Ali xx

  • Hi Ali

    I'm so sorry to read you recently suffered negativity from someone on this site. Please don't let it get to you, they clearly don't understand what we suffer each day and if they did then they would realise that we are strong to put up with what we endure on a daily basis.

    Take no notice, we are all here for you x

    From your true friend

    Louise xx

  • I didn't see what the negative comment was but I too feel they should be ashamed of themselves, I live by the moto treat others as you want to be treated, and if you cant say something nice, don't say it at all.

    Thank you Lisa for beginning this thread, lots of support for sunshineali,


  • Hi Frustrated,

    I live by that moto also xx don't worry I'm fine today. I want everyone to know that if they ever get any negative comments please share. Your never alone by the genuine people on here who want to help you. Even if your symptoms are different don't suffer on your own. I'm truly touched by what Lisa-Ann did yesterday ❀. Also from everyone else's caring words. Cathy I'm still trying to navigate my way through this forum. Thanks for dropping by! And a big hug from me to you πŸ€— Xxx Ali xxx

  • Also a big thank you to the moderators on here and Lisa-Ann the troll got taken down.

    Much love ❀️

    Ali 🌞

  • Hi

    Totally agree with that, we are all family, here to help each other through our pain. Sunshineali is thinking of her children, that is the reason why she asks for advice and help. It must be hard on the kids seeing there Mum struggling, and then Ali struggling with seeing the way the kids are acting around her.

    We are all here the family is strong, nothing can be said or done hurt us.

    With Love to all the family

    Colin - Isle of Wight πŸ˜‡

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