I have just been diagnosed with FND ( I think) by neurologist, but I’ve only had blood tests and a physical exam done. Can FND be diagnosed without an MRI being done to exclude MS ?
Neurologist basically examined me and sent me for blood tests then the next thing I heard was a letter from them saying ‘Blood tests were done to look for signs of inflammation(ESR), muscle damage (Creatine kinase) and auto-antibodies. These were all normal. Your presentation would be most in keeping with a functional neurological disorder’ blah blah blah, then a wee bit directing me to the website www.neurosymptoms.org, then ‘you will see in the pain section that fibromyalgia is included within the spectrum of functional neurological disorders’.
I am unsure whether they are saying I have FND, or Fibromyalgia, or both ?
Letter then says they don’t need to see me again but have referred me to physio.
Shouldn’t I have had an MRI to help rule out MS ? And am I expected to see only GP for further help/ care/ medication ?
So confused ! I assumed I would remain under neurologist care ?
Also I have been on reduced duties at work ( but not off sick) since I told my boss I was unfit to practice but didn’t need to be off sick, just on amended duties . He said as long as I said I wasn’t fit he couldn’t allow me to work clinically ( he was very reluctant and told me it was HR who advised him he couldn’t just send me home sick) and he put in an emergency referral to occupational health. They agreed I wasn’t fit for normal duties but could continue with non-clinical duties as I was managing this.I have a follow up occupational health appointment due next month. What exactly should I tell them ? I still can’t do my usual job (A&E nurse) with constant pain, limited mobility, mental fog, inability to concentrate or remember things and my manager is saying we’d have to arrange a formal meeting with HR and Occ Health to discuss a way forward as he can’t keep paying me my usual wage (i.e nurse wage and not a receptionist wage )and also having to pay another nurse to cover my shifts ! I’m sure he’s trying to go the route of ’ incapable to fulfill role employed for’ to try to get rid of me. I’ve told my union everything and am waiting until I have my occupational health appointment to see what they recommend going forward and once I have a date for the formal meeting I’ll ask for a union rep to accompany me.
Meantime I also took letter to GP to see what they thought and they also said it was very unclear but they took it to mean I definitely have FND and possibly fibro and have started me on Amitriptyline.
I’m not convinced the neurologist can discount MS based solely on examination and bloods ?
So I have 2 members of my family that have MS, Over 2 years and a bit I have been having a real hard time with many symptoms that are server pain, Numb limbs pins and needles all over my body and sever migraines which I have been hospitalised for. After arguing for over 2 years I finally had my appointment today well all that I am going to say is I am not happy, I have been sent to go for an MRI to rule out MS and if it isn’t MS then he said it will be FND, I asked what treatment is available if it is FND and he said there is NONE so this really scares me because I am already practically on no medications for my pain levels, and to be told that I will receive nothing is destroying me. I am going to wait for my MRI then see where that takes me. I wish to see and hear what people have been through to see how I should approach this. What makes this a tad worse is I work for the NHS and I feel completely let down.
Hi i just got a proper diagnosis on Saturday i have the an fibromyalgia today my partner came home from work and thinks I’m putting on this awful illness well I just cried i don’t get any help from my family as they think it’s all in my head and i need to push myself …I’m so tired and getting myself more stressed …
Hello Noelle I’m not quite sure what you’re saying. Is it that you’ve been diagnosed with fibromyalgia? And that your partner and family can’t see that it has actual physical symptoms? You have put your post onto an old one about someone being diagnosed with Functional Neurological Disorder, so have gone slightly off topic. However, as this forum is in the main concerned with MS, we don’t necessarily know a lot about fibromyalgia. You might find more information and maybe support from Forums Best of luck Sue
Hi Noelle as sue has said you have tagged to an old post.
Actually fibromyalgia affects the nervous system, its not MS, but it has pain really bad my daughter has it. Actually swimming and low pact exercise is good for it. You need to see your GP to help you with the pain. Join the fibro forum there are plenty on facebook, as it appears to be a disease way too many are getting diagnosed with.
Its real, and very painful and exhausting too.
find information and print it out and give to your partner. Its not a pretend disease its real, its here to stay, and many people WITH MS also have been diagnosed with Fibro.
Big hugs, it doesnt matter in the end what the label is the aftermath can affect your life just the same. (diet and exercise is the key), and mental well being. xxxx
I’m happy I came across this! I’m so sorry your going through all of this I truly am. I was diagnosed Weds with FND. I saw my neuro in March after an onset of symtpoms ON, numbness, dizzyness, falling I we, bladder loss, burning sensations, TN and poor memory. He said MS and sent me for a MRI. I had a head mri without contrast and that was it. The head MRI was clear and discharged. I had further issues with heat, dizzy, nausea, falling over, double visions legs a mess and also symptoms flares a few days before my periods and it’s messed them up totally. It’s mostly my legs again with periods and the sensory symtpoms. I argued and saw him again Weds as I also had the vibrating/buzzing, tight band around my chest that didn’t hurt just not pleasent, ON again, freezing sensations and brain fog was getting to me along with fatigue add the twitches that can cause so much pain I’m crying… I was in there under ten mins he said clear head MRI, it’s FND it’s a software issue. There’s other tests I can do but I won’t with you as there’s no need as your an up eat person. Read neuro symptoms website. I said but I don’t have those symptoms he said the sensory ones you do, besides you need one symptoms for it to be FND. I ha e that as a diagnosis with one head mri, discharged, no new appointment at all and GO said use the website and you’ll be better. I’m in Scotland and in Prof stones catchment so I’m hoping I can see him if my gp agrees for a definitve. If I play the well he can offer better treatment as in actual treamtnet not read a website, turn down your hyper sensitivity and ignore it won’t happen… Tell my burning leg that! I’ve seen so many diagnosed with FND and it shouldn’t be based on a negative test or a diagnosis of exclusion. I’ve had one test and told it’s that and go away. I don’t want MS, who does but I do want more tests! Am I wrong to want more? Is it right? I had a Hoover’s test done that was negative. I’m at a loss! There’s others at a loss too! I do wish you luck xxx