I have gained much additional knowledge and insight from recent posts by those who i have developed great admiration and respect for during my engagement with this community.
Thank you for increasing my understanding of our disease.
I have a long history of being known as a simpleton. Being this way allows me to ask questions so basic that I show no comprehension of the assumptions that promote useful dialogue on a topic. Ignorance is bliss... except when the questions start with the word "Why."
I have lots of "Why" questions. They all link back to the lack of basic biological science to support claims made by medicine about our disease.
I will never challenge anyone else on their assertions about what they experience from this disease. That is the fundamental trust we share as a community.
However, in the spirit of offering support to our community, I will root out and challenge every other assumption that others put upon us. This includes challenging any concepts for which I can not find supporting science.
Science is fact. We require facts. I want facts.
I encourage every one of you to ask the following question of any medical practitioner that you engage for your symptoms:
"What is the science underlying your assessment today?"
This is our life and we should separate fact from assumption.
Today I saw my neuro off the get new brain MRI next week if all is clear have been asked to be part of a study for FND at the hospital with another doctor who is researching this Dissorder which will be great cause I have many questions to ask and answers to find out . Although I have to wait to see what shows up on MRI either way feeling like I might finnaly get some where ..
Today has taken all out of me so I'm on my way home to bed but will keep you all up to date
When I was first diagnosed, FND did not make sense. I am a molecular biologist by training, and have spent some years in research. To be told our diagnosis does not have any organic basis is totally illogical and goes against every fact, simply because we are made up from millions of biochemical processes and reactions. I totally agree that we should be pushing for more research and scientific facts to support our treatment, and that we should be encouraging medics to base their consultations on fact, rather than a lot of the myth that is surrounding FND.
I cannot thank you enough for responding. I was an accountant by training and just wanted things I dealt with in the world to make sense. I post on this site way too often on matters that are so far over my head that I might as well just claim rights to the title of being biggest idiot alive.
But when I try to put all of this into context, it comes down to what has to be science. That is my only way forward now. We will see where this goes.
You do NOT come across as an idiot. Perhaps, compared to people who are studying this full time, you might be allowed to see yourself that way, but from what I've read, you have already learned an awful lot about FND and you should be able to stand up tall and ask your why questions with full confidence that you are 'allowed' to do so on our behalf. After all, it's only through asking the the big W (why what etc) questions that we have learned anything scientific at all.
I've got some limited memories of the history of new thinking about FND (after that horrible drug Letrozole stole my memories last year), plus I'm a problem solver by nature and by work history (in a variety of professions). So I see you as complementing me very well. Two different approaches.
As I was saying the other day, compared with the overwhelming majority (99%?) of the medical professionals we've personally encountered - WE, not they, are the experts in this condition. WE, not they, have done the research on the web and asked the questions and compared the notes.
It shouldn't be that way, but let's recognize what's actually going on here.
Hi I believe there must be some kind of chemical reaction or imbalance that impedes the central nervous system and operation of the brain. If it's not physical or a disease then it must be chemical related as these are what contribute to the action of nerves etc . So far nobody has looked at the medication I am on or asked how it effects my symptoms. I have struggled to keep quite a detailed diary from the onset of my seizures and the accompanying tremors, jerks paralysis etc and the drugs definitely have an effect . It is only through trial and error I have got them to a level where my condition is manageable but not happy staying on codeine long term due to its affect on the liver. GPs etc just don't seem to care how much drugs you take and their impact. Pay off is fatigue that makes the day even harder to get through and I still experience pain , every day is a struggle but try to make the most of any good moments no matter how small.
Oh dear, please be careful if they try to prescribe more meds. I 100% agree on hypothesis about chemical imbalances but have no direct science link yet for my reasons. Continuing to seek out researchers to pose this type of questions. This gonna take some time for all of us. Best I can do now is to keep the "mind benders" at bay from me until we catch a research break.
Gotta keep searching. Somebody on this planet must be heading our way. All the satellite dishes now listening for signs of progress.
I am the only one who seems concerned about the long term impact of codeine on my liver. My system is addicted to it now so will need a wean off programme and probably have to suffer withdrawal side effects and be left with the pain .
That makes two of us. I know you well enough now that you are managing your own meds and will not let them harm you with more.
You are a great fighter.
Dan / Seattle
Hi dan, happy anniversary, it's ok to ask questions but when you don't see anyone to ask it's very frustrating. My partner keeps ringing for me but we just get letters saying (I thought you had been seen again) Another letter stated seeing me in December which really upset me but when my partner rang they said we don't know why you got that letter as it says here in front of me URGENT to be seen before end of June, still nothing. As for questions, I write them down but by the time we get to an appointment I'm in agony in a seizure, my partner is cleaning my drooling and nose as he knows I get embarrassed, then he's expected to ask questions as I obviously can't and write answers down while he is upset watching me to make sure I don't fall out of wheelchair. Tha appointments I'm still waiting for are to be assessed as to wether they can decide if I'm up to being helped. The long drive to them, the noise, everything really dosent help for when I get to an appointment, so I have the worry will I ever get to an appointment and secondly will they say I'm too severe to get through their help. Not knowing month after month is like a ticking time bomb. Best regards to you and yours. Lisa. 🤗😊😳
• in reply to
Lisa-anne.
I find so much meaning in your words. I wish your doctors could be more proactive in care.
Your partner sounds like a most extraordinary person - just like you.
I send prayers for you to get some relief from the pain today.
Just a wee bit of hope for you , my first appointment with neurologist in December involved me having a seizure , I was wheeled into a darkened room and my mum had to speak to him on my behalf. Today I attended another appointment with a different neurologist and I was able to sit in the room with the lights on and speak for myself. 3 months ago I would never have thought I could do what I have done today with no treatment just my own guts , determination and family support, never give up or lose hope it's a long slow journey but together we can do it ! X
My memory is such that I always write down all my questions, in full, then leave my notepad on the table between me and the doctor.
Too many times I forget the whole question. Worse, too many times I see a heading and then totally forget the exact nature of my question, assume it's something totally different and irrelevant, so don't ask.
My doctor now takes my notebook, writes up all the scripts that I have listed as needing, while asking me what i mean by each of the questions in my list. I make sure in advance that the questions will prompt me sufficiently to not forget the details when I'm with him. So many times I simply forget while with him, and dismiss a major, serious issue as being minor and not worth talking about. Not good!
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