Whow, what a journey. My feeling is this it doesn’t matter what we are diagnosed with providing that we have full confidence in what medical professionals are saying is right. I worry that some of us fall through the cracks just because we don’t quite meet the set criteria for determining MS. Ultimately, we just want the best treatment possible. I want as much of my life back, through medical intervention, as is possible. I am sick of spending so much of it in bed. Lou x
[/quote] I am sorry but I have to disagree with this. We are taught to take on board what they tell us because they are the professionals, but after spending many years working in the nhs, I have worked with quite a few drs, surgeons, nurses, who can talk the talk, and convince people they can walk the walk. But when it comes down to it, they can’t, they are just good at being convincing. It does matter what you are dx with! If you get the wrong diagnosis, you aren’t getting the treatment you need, and therefore will end up spending more of your life in bed!
Hmmm not sure my post came over the way I heard it in my head, and having reread I can see why you have flagged it up. I get what you are saying, which in part is what I was actually trying to say but much better explained. We all need the right diagnosis as you rightly say. It is just frustrating when there are a number of professionals involved and they don’t agree, or keep changing theri opinion, hence my comment about wanting to receive the right treatment. Thanks for flagging this up. Lou x
Bunnythecat and amc1 - if you haven’t already, do join the private Facebook group via the FNDhope website. Bunny - I’m finally getting treatment this week at my local Chronic Fatigue Service centre as the Cognitive Behavioural Therapy that the neuro recommended as a first choice, has a year long waiting list. The initial appointment will be an assessment and I’ve already filled in a ten page cross the box type form! Funny, you can look up MS and CFS on the NHS website, but there’s no mention of FND. The heat is interfering with my nervous system, making the muscles around my right eye contract so I do an involuntary Patrick Moore (bless him!) and cog-fog gets worse. I do also have Chronic Fatigue and recent exertion plus the heat turned me into some slow-moving, heavy feeling version of myself. Oh, with added parasthesia. Anon and LouLou - yes, we need to be certain of the right diagnosis. FND is a tricky one because opinions vary so widely on it that even if you receive the diagnosis, you don’t necessarily feel like your on firm ground from which to spring into treatment. It’s all so confusingly fuzzy…
Another update: I finally had my assessment appointment with a specialist OT at the local Chronic Fatigue service. It was very positive and she explained better than anyone so far what is going on with my body! The normal homeostasis marker in the brain has been skewed, so when I experience any stress and my body tries to return to normal, it is not reaching balance as it thinks it is. So, I have FND including mild CFS. Well, it makes sense to me. I am yet to be 100% convinced that there is nothing organic going on (MS) and my symptoms seem to be getting slowly worse, despite my self-help methods while I wait for the 9 week treatment course to be arranged. My latest concern is these periods of dissociation. I ‘space out’ …just go on pause whilst I sort of observe myself inside my head. Worryingly this keeps happening whilst waiting to cross busy roads, sometimes with my young daughter. I think I’m still partially in limboland.
I have followedthis post with interest. I am 41/2 years wit Neuro problems and was diagnosed with ChronicFatigue Syndrome.
I was lucky enough to be referred to the Chronic Fatigue Clinic which is about 1 hour away from me about 2 years ago, this is a working diagnosis that I have and the initial assessmnet at the clinic was more on the phsycological side than physical. I decided not to return to the clinic partly I think because I dont think I have CFS or my symptoms have not been proven enough to make me think this is it 100% I am clear full body MRI and LP. I have a fab neuro now who I am seeing again shortly after quite a long break, I just dontknow whereI go from here FND has never been mentioned to me but it could be possible.
Will be interested t see how you get on with your appointment, goog luck
I have followedthis post with interest. I am 41/2 years wit Neuro problems and was diagnosed with ChronicFatigue Syndrome.
I was lucky enough to be referred to the Chronic Fatigue Clinic which is about 1 hour away from me about 2 years ago, this is a working diagnosis that I have and the initial assessmnet at the clinic was more on the phsycological side than physical. I decided not to return to the clinic partly I think because I dont think I have CFS or my symptoms have not been proven enough to make me think this is it 100% I am clear full body MRI and LP. I have a fab neuro now who I am seeing again shortly after quite a long break, I just dontknow whereI go from here FND has never been mentioned to me but it could be possible.
Will be interested t see how you get on with your appointment, goog luck
I get those periods of dissociation, it feels more scary now that I know it relates to my MS. It’s been happening to me for years. I remember doing a college course in the 90’s and the tutor was addressing me, I had know idea…felt really embarrassed but luckily he was nice about it. It’s like getting lost in your mind, I’m not even aware of thinking of anything.
Sometimes my husband thinks I’m watching the television and then he realises I’ve gone off…lucky we have live rewind
Hi Noreen, yes - thank goodness for live rewind! I’m still waiting to hear about my course of treatment and read in the booklet I was given that it could be ‘some months’ due to current demand. At least I got my CC’d letter from the OT to my GP. It says that I seem ’ very motivated to improve her health’. It mentions that we discussed how FND can often overlap with CFS. Anon. - Good luck with your ‘fab neuro’! Hope you find answers soon.
Update - I’m still waiting for that treatment course. In the meantime, I’ve had a relapse and numbness and muscle weakness has spread, involuntary movements have appeared, waxed and now hopefully seem to be waning. I’m now using a walking stick as I’ve been quite wobbly and prone to stumbling. The numb feeling might be slight, but very noticeable to me. I’m going back to my GP on Monday to ask for a second opinion and I’m attempting to stay calm. My lovely ‘mummy friend’ came looking for me after we’d dropped our kiddies off, to give me a lift home. Thank goodness for kind, understanding friends. I hope you have at least one of those
Another update! I contacted the CFS/ME group therapy team and they are meeting this week to set the course dates. I’m now also having Physiotherapy and have been referred back to Neurology for a second opinion.
I had a day of fatigue, incessant facial tingling, general wobbliness and not so fluid speech. Luckily, hubby had a gap in his shift work and came home, entertained littl’un whilst I had a cat-nap (unusual for me). I have things that I need to be doing, but little energy or motivation to work (I’m self-employed). I’m mostly ready for a big weekend trade fair next month but still need to create a certain few things. All I want is quiet and rest. Not easy with littl’un on her summer hols! She gets upset that I don’t play with her enough and I feel a bit guilty…but I know that doesn’t help. I just do what I can.
Hi I have just been given the diagnosis of FND and the Neurologist stressed all the symptoms I have are real symptoms non psychosomatic. And everything I have read on the internet about FND state that the central nervous system is affected, which causes the brain’s inability to filter away unnecessary signals. FND is thought to be a psychological or psychogenic condition. I have not seen any mention of psychosomatic. The Neurologist said that the trouble with diagnosing FND is that there is so little known about the causes of the condition that many Neurologists and GPS find it difficult to tell a patient that is the diagnosis.
Hi Misty. You’re posting in a thread from 2013 and the people in it may not be reading anymore, or even on the forum. If you want a conversation or have a question to ask, you might be better off starting a new one. Top of page and click, New Thread and away you go.
Is this post displaying properly; I only see the most recent post as 11 Aug 2014 at 9:39 pm, yet there must be later ones as it is showing up as current. I have selected page 2 and ‘last’.
Hi, I have had symptoms of MS for approximately 15 years now and been back and forth between specialists and been told it was probably MS, then Fibromyalgia, MS again, ME, all the way around the mulberry bush and then FND. Having been told by many that they have never heard of it and my bank insurance company not having a slot to put it under so classing it as ‘nerve related’ I am fed up with not being taken seriously. While sitting in a wheelchair waiting for assistance at Gatwick Airport, I got into conversation with a lovely lady who was also in a wheelchair. She asked me what my disability was, and when I told her FND, she had never heard of it either. She ask d me my symptoms and replied that they were exactly the same as hers and she was diagnosed two years ago with MS. To cut a long story short, she said that the only difference between her and me is that she has a massive support system around her, being the MS nurse and the support groups and I have no support at all. She advised me to ask again for an MS diagnosis, even if it is just for the support to help get through the day to day living with the symptoms.
