I take a slight detour today in my communications.
Many new impressions have formed from the posts I have been reading lately. I now translate those impressions into my action of the day.
In the USA and perhaps everywhere (I do not know), I have the ability through electronic link to make direct entries into my medical record. I do this by messaging my doctor through their online portal and simply noting on the message that what I am writing is solely for my medical record.
It is a redundant exercise in that all such messages go into the record but it makes my doctors uncomfortable because I am not directly involving them in the conversation and am not asking for their opinion.
I am telling them what I think and what I want without their interpretations being added. No permission necessary!
For today,
I am writing into my record that from this point forward, all of the vague and obscure terminologies they use to describe my idiopathic illnesses (yes, including the organic diseases) will now be combined in the phrase "medically unexplained symptoms of the nervous system."
They can use whatever diagnosis code descriptions they need to in order to pay my bills under insurance coverages,
but,
for purposes of communicating with me, they will only refer to my conditions as being medically unexplained symptoms of the nervous system.
Some of you will wonder about using the words "of the nervous system.". It is the same thing as saying neurological but is not that formal medical terminology we all get hung up in from time to time.
For me, every one of my symptoms and diseases are of the physical nervous system because that system interacts with every organ in my body that is dysfunctioning from my extremities, eyes, ears, nose, throat, voice, to my heart, lungs, brain, liver, etc. I cannot yank my nervous system from my body and have anything left that would still work.
This does not mean that the nervous system is an isolating cause, it just means to me that it is connected to my issues in some way at least until somebody gives me a better reason!
I send that message into my record this day.
I give thanks to Lisa-anne for guiding me onto this path today. Without you, I would not know what to do next.
Totally agree I believe the whole body needs to be looked at not just the brain , one day and soon I hope someone will find out exsacalty what is causing it be it from food, micro organisms , enviomental, pollution , brain , nervous system and yes like you until we get an answer FND will always stand for (Finding NO Diagnosis) the body is very complex system and not all is known about it .
I always look forward to reading what you have to say. It makes all the sense in the world. Praying for some answers for you from the upcoming MRI. Keep us updated please.
I've just watched a video on You Tube that Kim has watched.
It's about a ladies story and experience of FND or FMD.
If you go on You Tube and type in:
Living with FND.
Her name is Larissa Anderson.
It's very informative and I hope all the other people on this site can see it because she expresses all the concerns we have with this condition.
I'll e mail you properly this week Dan.
So busy with all this paperwork and medical letters I'm sending in.
Love to you all.
Tony & Kim xx😉😉
Great information on what to have put in medical records and the video. Thank you.
• in reply to
Notinmyhead.
Thank you for being here with us. We appreciate you.
Dan / Seattle
• in reply to
That's very kind of you. Thanks to all here!
Hi dan, I hope today you are feeling better, I went to bed yet again about 4am but have managed to crawl out into another pain day (and weather turned cold, dull and windy) roll on ☀️ this illness is definitely to do with nerves and signals from the brain, my taste has gone or changed, I've always worn lovely perfume, I can no longer smell it, I enjoyed scented candles but can no longer smell them this is without the other horrendous symptoms. Although I still put perfume on when I remember, I can't smell it. The forgetfulness, brain fog, if my partner gives me choices to eat or to do anything, I'm just frozen, I can't remember the choices he's just said, I might remember l word so ill just say that as I feel so stupid because I just can't remember my choices. Even at an appointment the nuerologist said take your coat and shoes off, I just stood up, then sat down for ages, I just was unable to pick l to do so got stuck. He must have seen me standing up, sitting down but never said a word to help, my partner helped me to sit and do l at a time. These embarrassing things are always in my head and I don't understand how a nuerologist can't see what he says has such a huge impact on us. Rant over. Great big hugs to you and yours. 🤗🤗🤗🤗🤗
• in reply to
Lisa-anne.
I know you are at wits end with no sleep. That must be the worst as without it, body would naturally strike out with pain signals saying "help, I need some rest here!"
It is such a heartbreaking cycle to see you go through. I really pray for some relief in the form of a decent night sleep.
The loss of taste and smell senses are another hard one to deal with. Decades ago, mama ran a candle shop and I worked in it as the stock boy. Candles of all scents would just inundate my senses as well as my clothes. Tricia wanted to to go out on dates after work because I smelled good. I just wanted to go home and change. I did always enjoy taking her to the perfume counter on Christmas Eve to pick out her favorite scent. The sales ladies would dote on her to no end because back then I worked and wanted to spend my money all on her. Those were such good times Lisa-anne. The loss of those pleasures hurt now.
I agree whole heartedly that being unable to remember what we have just done is disheartening and even despairing when in front of the doctors and they just sit there of no help. Only good thing for me is I forget about the doctors pretty much right after I get up and walk out that door. So it does have a plus side for me!
I so enjoy our chats as I relate to the things you say and experience. We will get better Lisa-anne because we want to do all those wonderful things again with our partners. We keep trying and hoping our brains and bodies can adjust to let us.
Hugs and love goes out to you and Trevor with a better day in mind. Gotta go find a doctor to chew on about helping us.
Your friends in Seattle
Dan, Tricia and Andrea
• in reply to
Hi Lisa-Anne,
I have always had that thing where you get up to go do something but forget then remember but now I just totally forget. I tend to do things in the same order when I get up. I have always had problems getting to sleep but now I haven't had a decent sleep since getting FND. I used to be a runner and it feels like that, when you don't sleep you get up and all your muscles hurt because they haven't properly rested. I was in hospital recently and the orderly who took the meal orders was yelling at me because I couldn't tell him what I cooked or ate at home. I told him I had coeliac and was vegetarian and I didn't know what the kitchen stocked but could he not just work with that information and I told him I can't swallow soup, I choke on it as I have Sjögren's syndrome so have to sometimes consciously tell my brain to swallow a drink or I choke on that too. He just kept yelling so I missed lunch where he brought me soup, then for dinner he brought more soup puréed this time and when I told him I couldn't have that either he was so mad. So I had no food for36 hours. This is an example of healthcare staff not understanding FND and brain fog and I haven't cooked a meal in 3 years I just snack because I can't stand for more than a few minutes. My diet has went from really heslthy to poor. I also believe when people put pressure on you it I call it melts my brain and I can't concentrate. I recently had a home visit by an OT and she came with someone and that person was very aggressive so my brain switched off and at the end they seemed to have some 'plan' in place, I don't know what for or when and I was explicit that I hadn't understood or retained anything they said that day and they just left. The OT previously telling me she had full knowledge of FND. I believe she knows nothing about it now. But I understand the shoes and coat issue. I Had an OT assessment and one of the questions was like the question they use for Alzheimer's- il give you 3 words and I want you to repeat them back to me and I could only get 2. I even said it's just nerves and can I try again and I still got it wrong. I had no idea how badly my brain was affected until that moment and it really upset me. The puzzling thing is if you ask me about issues to do with things I have studied or current news events I can provide strong commentary and facts and figures. If you ask me what I made for dinner this week I would struggle.
• in reply to
Hi Amallia, I hate being given choices, if they are wrote down I can look through and choose but if not I am not able to choose anything, I don't retain the choices. I never go to hospital now as like you I've been ignored, shouted at when in spasms for not keeping still, I'd rather suffer at home. I did ring my dr once because I couldn't breathe and my partner at work, I collapsed while on phone so he rang my partner who rushed home, he said I was unconscious for about hour and half or more, the dr never rang back to see if I was ok. I sometimes struggle to swallow liquids, water but nothing like your suffering, it sounds so awful to live like it after being so healthy. What a life this illness gives is just unbelievable. When I eventually get tired enough to hope I'll sleep I always try to remember what I've done during the day but it's not there, memory just goes. Even though every day is same I still struggle to remember. Kindest wishes to you Lisa. X
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Hi Lisa, iv been told to keep a diary of what I do each day to see how I'm progressing. Which is funny as I'm regressing. Anyway iv tried to explain, this homework is an extra task and even the thought of it is exhausting never mind having to do it. I'm at that point too of not going to hospital or telling my GP stuff as I get sick of saying it and I once saw my GP who I always describe as great, rolling his eyes at something I said. I believe he may be in the 'all in the mind' category although he has been supportive.
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Hi again, my partner wrote a diary for me of all he could remember as in the beginning with sciatica I was told we'll have you back to work in 2 weeks, then 4 etc, I think he wrote it for about 18 months, he has taken it to every meeting, appointment but not 1 will read it or even look at it, maybe someone will read yours but like you I would not be able to remember or even do a daily one, it's not right to be treated like this and I'm angry for you to be told to do this, it's hard enough just to get through a day sometimes without remembering and trying to write. It's just non positive and unhelpful and knocks you down further. Bless ya. Loves Lisa. Xxxx
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Exactly you don't need to be reminded of how bad your day went if you can even remember at the end of the day everything. For me I would have to carry around something and note it then and there. With the positive thinking I'm all for that and I'm on my own so I know it sounds really sad but if iv accomplished something iv been struggling to get done, I give myself a pat on the back and tell myself well done. Even if it's just making a call or posting a letter. I would encourage others to try if you are lacking support xx
Thank you for your lovely reply, not been a good day, so tired and angry, but you buying perfume and your wife choosing is a great memory, I loved smelling the new ones out, buying Trevor aftershaves, sitting having a coffee watching the world go by, loving to see what the women were wearing, what was in fashion, being a part of society and life. Looking at the sparkle jewellery (sure I was a magpie in a previous life) totally unable to walk pass a bit of gorgeous sparkle, Christmas clothes always had lovely sparkle. I've so missed this wonderful time, I've always loved Christmas. Never yet seen a white Christmas, still there's time. But your right some memories hurt more then others. Big hugs to you, Tricia and Andrea, love from Lisa and Trevor. Xxxx
• in reply to
Lisa-anne.
Oh we both lived in a previous life with all of the finer things and the gracious gentle pace of respect and happiness.
You bring the best out. Thank you so much. Please rest. You have been very active.
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Morning. My wife found this one...
Another report I've had from someone who was misdiagnosed with 'FND' ...
A little politeness please?
