MRI results! 2024
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- เผยแพร่เมื่อ 30 ก.ย. 2024
- So i finally received my MRI results letter today.
9 weeks of being kept in limbo.
But to no surprise there has been no change in structural findings in the brain or spinal cord.
However, there are lots of wear and tear damage to discs and vertebrae which could be triggering my #FNDsymptoms.
Not gonna lie, I'm a little frustrated as I was adamant that they found something after my scan as it was quite traumatic.
But if course I'm very happy that there's no sign of MS or any other Neuro condition, despite the progression in my mobility issues etc.
Sona lot of work to do with pacing myself and continuing working with rehab etc.
I understand this 100% mate! For me like you waited for results and yes like you nothing to unusual!!! FND sucks and no one understands why!!! Take it easy mate!
100% agree with you my FND warrior
Hi Chris, Has the medical profession considered Cervical Myelopathy , ie is there a possibility of spinal compression, anything in your past that could have possibly caused issues to neck etc (I'm not a medical professional, just looking at as much evidence you portray in videos) .
The waiting time is always the hardest, Whether it is being on a waiting list to see a Specialist for assessment or treatment or for getting results of a test. I've had a few MRI scans and several brain CT scans done too. MRI scans of the brain showed white matter Ischemic changes due to having severe migraines on those occasions. I've also had Bursitis in both shoulders due to the convulsive seizures,like a injury aftermath as such. I've also damaged a few of my teeth from those seizures,tongue biting and even had incontinence a couple of times. I was given different diagnosis,however with my FND I don't fit snugly into that criteria of someone else's diagnosis as I do have several Chronic conditions along with FND. Too many times doctors and Specialists can only guess and do tests based on the symptoms we are having but even they get things wrong. Yes this is debilitating and often misunderstood. I try not to attend hospitals unless I have severe complications due to being medically gaslighted and often left without any treatment. Keep up your videos and share your experiences as they will only help us to spur on.
Sydney banks quote a ball of energy turned into matter
Thankyou for sharing I am on the same journey 😢
I had the same exact outcome! I know how you feel! Hope you feel better! 🙏
@@silviamarques75 sorry to hear this. I think this is a very common issue with most of us with FND isn't it. So very frustrating. But all we can do is adapting and keep on advocating ourselves. Thanks for your comment.
Hi Chris. Despite being a long termer (24 years now, same age as you at the start), I still recall all my drop attacks and other issues. As I mentioned on a previous video of yours my best cope is making my brain giggle, especially when an ambulance crew are shouting at me to check for conciousness. Pardon my Klatchian, but that bloody hurts! Hearing is hyper sensitive during an event. I hope that there will be more advanced research and perhaps some effective treatment long before you get to my age. The best I can do for now is say to all in this boat, "don't push yourself, do what you can manage and keep a giggle in your brain, even if it won't reach your face". "
I’m nine months from diagnosis but have been told by so many doctors that I’m making it up
Well said mate, I feel your frustration. I'm 3 months in to this now, every day is a battle with myself. My symptoms are so variable is the hardest thing to deal with. I can have brief moments of something resembling normality every now and then though, so they give me some hope to cling on to.
I feel what you're going through and keep the videos coming
Scans always come up clear for me too the doctors always use the software system conversation yet they still put me back to bloody mental health.your videos on your journey are helping me very much that's probably making me look like a stalker because I comment on most of your videos lol I'm not though. you are not alone ,for sharing your experiences you are really a blessing to others who suffer too😊
@@anndeluce5825 ahhh I'm so sorry you are suffering and to hear about your journey so far. And please keep commenting on my videos, that's what I'm here for and that's what I'm trying to do. Spreading awareness and information is so important I think. Hope you're well. Speak soon 😀
I believe that is one big issue that needs to be addressed and fixed. Mental illness.
I believed we all benefit from seeing a counselor yet it is for the purpose of wrapping our head our mind around a disease, disability that we are now learning to live with. Abilities, jobs, and such we are now unable to do.
Anxiety that others in the medical field says it is the issue. Is NOT the root of the issue.
It is being ignored, labeled falsely, and put in a box we never asked to be in.
The software is your mind!
Thanks for the update Chris
Like wise I have cervical and lumbar spine damage and they just said it is down to my age,
Personally I don’t half of us people have FND it is the consultants looking for a easy option to save them looking then they just leave you to get on with it not one person realises how much pain we are in some days what we are dealing with
Like you said MS and Parkinson’s are very similar but they get treatment we don’t we are nobody’s to these people
And now we are tarnished with these 3 words we are either mad loopy or putting it on according to these doctors
Good luck Chris thinking of you
@@John-y9b5b it's disgraceful that we are made to feel like that. I've been very fortunate and have had some great specialists with great care plan and not too many horrible comments. But I know most of us have and I feel awful for you.
My late mum who died last year died to severe ms she had no help at all just us as a family I hav fybromyalgia with elements of fnd scans clear at present though it's highly linked to autism ADHD heds for which ime now diagnosed as my mother surely had to and grandfather😊
🥰 thanks for sharing Chris.
@@Lea-AnneDavies-lh6kh no probs. Islets just a shame it's not very helpful or full of new advice. All we can do is keep going eh. Thanks for following me
Hi CHris - how did you know what was wrong with you before the MRI. I have FND but was diagnosed in a week after MRI was clear
@@gavinmurphy4510 hi, my Neuro wanted to keep me under review to ensure there was nothing else there. I think it was more worry of it being MS or something else. I think everyone who has FND worries they've been misdiagnosed
Totally relate with everything you say. Thankyou for another great video. I struggle so much with cognitive issues that I can't explain FND very well so thankyou for explaining this awful unpredictable illness really well. I show your videos to my family to give them a better understanding. Take care 😊
Hi Chris, sorry to hear you had to wait that long for the MRI results, but try to think positive with that of what you don't have. It is so frustrating in the wait and see approach, test after test and still not 100% on how to treat the symptoms. Sometimes I feel like the ginny pig (poke and prod) with no answers. A big thing for me was acceptance of my FND, and a big relief was getting into a great FND program at Massachusetts General Hospital, where they have a whole department dedicated to FND (it is awesome). I'm not sure if something like this is near you but it has made a huge difference for me. The doctors and therapist all understand what I am going through and have ways to treat me. I'm a real positive person so I look at the possibilities of where I can be in a year. I also like to help where I can and the PT is taking videos of my visits so they can use them in their conference presentations and so other other patients can maybe learn and see that they are not alone, that others have the same thing. God Bless, keep pushing forward. I have an ear you can bend whenever you need.
@@rickhoward2938 thanks for your comment. Of course, it's definitely a positive that the scan was a negative one and it's nothing nasty. I'm pleased you have a great support network and program. That's so important. I've been pretty lucky too, with physio, psychology and occupational therapy.
Thanks for following me. Hope you're well?
Always good to hear about people who make good progress with this condition.
100% with you.. with my symptoms I’m convinced I have MS but mri showed disc indentation in two areas of my spine.. all sorts of weird symptoms now being put down to FND .Good luck on your journey too
@@laurenB426 thanks for your comment. It's so frustrating isn't it. But all we can do is keep fighting it and doing what we can. I make sure I go back to the docs and make a nuisance of myself if I have new ongoing symotoms. So important we don't get fobbed off. Hope you're well.
Iam glad your test turned out good I agree with you. These internal & head tremors drive me crazy. I have a bad back & neck but I refused back surgery the neurosurgeon said it has nothing to do with my symptoms I refuse to believe that . Thanks for posting good luck
@@MarieBlackburn-l9t thanks for your comment. The main thing is to stick to your guns and don't be pushed about. Keep self advocating! Best of luck 🤞
I feel hopeless
I totally agree, the good days when we feel good enough to do stuff or even a long walk (at least for us) we pay for it.
One thing I was wondering and to be honest I am not sure if you have already said in past videos (if so I apologize) Have you ever been checked for Lyme Disease and all co infections as well?
It is noted that there is a tie between Lyme disease, MS and they have Eve as well FND.
I started this journey with Last stage Lyme, Neuro Lyme, Rocky Mountain Fever, and many other diseases . In 2021 it was diagnosed.
2024 Diagnosed w FND
I am getting ready to go for a spinal tap in a week or two. They are checking for pressure, as well as MS and many other things.
I want to say your videos helps so many of us😊! You are a warrior
MS and FND are commonly misdiagnosed by the way. I hope they find out a way to show what’s happening is real regardless of a lesion soon.
Chris I had a 90 min MRI scan 3 weeks ago everything has come back normal!! I really thought I had MS I now have to have a electric test!! But still no clue as to what is wrong with me!! Been going through it since 2008 but the last year is when my body gave up! Stick in the brother you are not alone 🫂
@@bretsmith6473 thanks for your comment. It's very difficult to comprehend isn't it. When we feel new symptoms or worsening of current symptoms, it just seems to be never ending. And when we report to them to professionals they dismiss us a lot.
@@ChrisCFNDjourney so true brother I'll keep you posted 👍
@@bretsmith6473what are your symptoms my late mother had severe ms I have fybromyalgia with elements of fnd hypomobility is link to
Thanks for sharing your findings. Its only 4 weeks since i was told by my gp i may have FND. Now waiting on neurology to contact me for assessment. I too have cervical spine damage which has caused me almost no issues my whole life. Then i got covid in july. My arm and leg went heavy and twitching the very next day. Now my face goes numb and most of my body feels fatigued except my left arm. It feels normal. Weird.
@@moggyslifehacks1819 hope you get some answers. It's been a long few years for me, like many FND sufferers. Probably one of the most frustrating illnesses you can get. Best of luck and keep us posted 😀
I completely agree with this whole post Chris. My mri showed disc degeneration and I had some injections in my spine a year ago. My brain mri shows 2 spots of high intensity light, 2mm each spot, but the neurologists say that these are age related - 46?! and not in a place they’d expect to see given my symptoms? The scan report says possible gliosis. Which means scarring. The spots haven’t grown in 2 years - I take high dose d and a med called LDN. An anti inflammatory drug as I have many neuro cognition issues and ME also. My bloods reveal systemic inflammation, possible small vessel disease in the report. My argument to them has been that yes I meet the hoover sign and I have had a lot of trauma and stress in my life. But every symptom that presents that doesn’t fit the FND pattern should be investigated rather than simply explained as FND and that explaining away head pain, visual disturbance, bowel and bladder issues, balance mobility numbness tingling etc etc cognition and fatigue and pain as FUNCTIONAL because computer says nope is negligent. I have learned that if you ask for tests and they refuse you can ask them to note this and why on your medical . This often results in the correct investigations being done… I had to make a complaint to get them to rule out MS and neuro degenerative disease - my father passed this. If i hadn’t made the PALS complaint id still be none the wiser re the spots on my brain.
@@sarahdawson7985 wow. Thanks for the info and I'm sorry youve had a bit of a journey too. Like most of us with FND it's just so frustrating and we all need to self advocate. It's so important. Keep fighting
Hi Chris , I'm 100% with you on everything. It's been 4yrs now and still frustrated with it all . A Lot more symptoms now ontop of original symptoms, pins and needles , tingling skin , numbness etc , I have Rheumatoid arthritis too. I had the same thought MS but don't want to mention it to GP as I feel what's the point 🤷♀️ they won't listen . Take care Chris
@@BeccaTugs thanks for your comment. Please make sure you keep advocating yourself though and make a nuisance of yourself. It's your health and you know your body better than anyone. Hope you're well
Thanks Chris , I will make an appointment Monday 😉
Same story here. Waited 2 months for my letter too. Though they did see some damage in my frontal lobes, my neurologist still thought it was FND. I sent him a letter with some questions afterwards, and he kindly phoned me the next day. Naturally I asked for my MRI photos first, and looked at them myself. Of course, I am not a specialist, but I wanted to make sure everything is "accounted for" so to speak. He said that the damage in my frontal lobes were most likely caused by my many Migraines in the past (no doubt some springling of mini strokes? I will see my neurologist again in September, so I can ask more questions about it). I also read that many symptoms in FND come and go, where with MS, a lot of symptoms are there to stay. But. many of my symptoms are there 24/7, so ..... In my opinion FND is certainly part of the story, but I can't help feeling there is more going on. I have started a pain diary and I am also noting down all the symptoms I have per day (next to the pain I already have due to a double herniated disc in my spine). This helped me to see that a lot of these symptoms are really here to stay. The research continues, as I am determined to understand it. I wish you good luck, Chris.
@@wendywebster5920 many thanks for your comment. Yeah, I also have permanent symptoms which I have to deal with on a daily basis. Mine seem progressive too which is upsetting and annoying, but I have adapted. It's just so frustrating isn't it. Keep me posted with what the Neuro says in September. Good luck 🤞
@@ChrisCFNDjourney I will keep you posted. I already made a list of questions. Thank goodness it is a Video call with the neurologist this time, as travelling is really hard just now (especially an hour's drive to Aberdeen). Look after yourself, and let me know - through your wonderful videos (thank you for those) - how you are getting on, please.
Nice one for your update chriss i feel u pal, ive been told anxiety first off then fnd now cramp fasiculation syndrome driving me nuts... i too have cervical thoracic and lumbar disc damage the twiching and tinnitus palpatations always worse when laying down im not looking forward to winter for the contraction of tendons im always better in the warm months doctor wants to try me on baclofen have you had it before? If so whats your thoughts?
“We just want our old life back”….100% how I feel. All the tests but no treatment or hope.
On the nail! Feeling guilty due to not being able to work as a "fit" 40 year old was the most frustrating thing. Years ago now. I'm too old for "them" to care about now.
Yes exactly its so difficult to deal with this! I have a bad back but most say mild to moderate bulge and they can't see the foot drop numbness and tingling coming much from that but i just don't know. i just wanted to let you know your not alone we will get through this one day and people will understand our struggle better
They have to wait until things get bad enough to see visually, I have T6T7 buldge indenting cord, l4l5 mild moderate bulge but there is something making this so much worse. i would like to speak with you about this before your next update. do you have zoom or anything to message ?