Who has been labelled as having functional neurological disorder but feel certain your symptoms are more organic/physical than that? What things make you think it’s not FND and what have you or are you doing about it?
I’ve had clear MRI scans but still have to have the evoked potentials and an EEG but I think after that I’m pretty much labelled FND. Some of my symptoms - weakness, tingling, muscle twitches, fatigue could be FND I guess but I also have many myoclonic jerks each day, numb finger tips and a totally numb patch on my right breast, hot burn patch on top of my right foot and cannot feel a full bladder.
Aw yes Poll, you’ve had a very bad run of it haven’t you, I’ve seen some of your posts! How come they can’t diagnose you? I think if I were you I’d just be inclined to say I’ve MS and that’s that. Do you to most people? You must be so fed up. Is your instinct MS? I’m going to look up HSP but doesn’t that mean someone else in your family has to have it if it’s hereditary?
Kel, FND is a functional neurological disorder which means you get the symptoms but have no damage - look at this site www.neurosymptoms.org
Hi kel - no one has mentioned fibro but I don’t really have joint pain, only some right ankle pain sometimes. I have looked at the HSP Poll mentioned and that doesn’t fit at all. It is very confusing.
I can’t particularly feel when my bladder is full either but it will empty quite well and I make sure I go regularly. I do have to rock back and forth on the loo to empty as I started being like an old man dribbling when I stood up having thought I’d finished. I haven’t had this looked at though.
None of this is any fun at all is it? Hopefully we will all have some answers soon.
I was diagnosed with CFS in 2010 and I simply did not accept the diagnosis because I had to confirm the neurologist has got the correct diagnosis. I did not agree to the diagnosis and did not agree with it and was very clear about it to my GP.
Even though I refuted the diagnosis I recieved a letter in the post confirming I have been diagnosed with CFS/ME, it was a private appointment thats why I probably received the letter confirming diagnosis.
I saw the same neurologist again privately and he still was of the opinion it’s CFS and because I don’t agree with him he can’t help me. Upset at this I gave him some test results and he apologised for not having those and gave me a new diagnosis systemic inflammotory disease + fatigue + uveitis. I was upset with the attitude of the neurologist and told him that is it not one more word and walked out on him. I still have to pay him for that consultation
Why I disputed his CFS/Funtional disorder diagnosis is because I have abnormal VEP results, I have clinically diagnosed Optic Neuritis, RAPD when Optic Neuritis is active. I have abnormal NCS/EMG results. I have Internuclear Opthalmoplegia and Nystagmus. Inconclusive CSF results along with other various symptoms which are real and not made up.
I have had systemic inflammotory diseases and connective tissue disorders ruled out by the Rheumatologist. I am also still under the care of a Haematologist and they have not been able to identify any cause for my symptoms. “ms” mimics have also been ruled out. I have seen many speciaists over the years and the majority of them point to “ms” as the cause of my medical problems.
Just because no lesion or lesions showed up in my MRI scan does not mean that I am making the symptoms up.
I am going to carry on fighting till I get some answers, I had never heard or knew what “ms” is and was, until the Opthalmologists asked me to get my neurologist to consider “ms”
I am not saying I have “ms” but I will not take accept a diagnosis that points to me making symptoms up. I have very real symptoms and some abnormal results but no answers yet. The fight will continue from my end and I know there is a possibility that I may get no answers at all.
My last diagnosis by a neurologist was multiple neurological symptoms cause unknown.
Hmm fjear, sorry you’ve had such a bad time getting diagnosed and thanks for such a thorough post. I think your comment about not stopping until you have a diagnosis that doesn’t point to making symptoms up is really important - we clearly both know we have physical symptoms brought on by our body not our mind so I’m with you on that all the way. I know 100% my symptoms are not psychological. So does my GP thankfully.
Hi emmae, how you had any tests done for example nerve conduction studies, visual evoked potentials, MRI, Lumbar puncture if not then I suggest having these done. Also have you had other conditions ruled out which mimic “ms”?
If you have had some abnormal results then you have some weight that something is definitely going on and you are not making up the symptoms. It might not be related to “ms” at all.
Hang in there like the rest of us and keep the fight up for answers.
emmae emmae…if your nan had Parkinsons and your son has Tourettes that is incredibly significant! Does he swear with it? I told my neurologist I quite fancy throwing rude words out when I jerk about just to have a bit of fun with what is actually a complete embarrassing a*sehole - but I guess it’s no fun when it’s real.
Most importantly, yes these things can run in families so your symptoms MUST MUST be taken seriously.
Aw yes Poll, you’ve had a very bad run of it haven’t you, I’ve seen some of your posts! How come they can’t diagnose you? I think if I were you I’d just be inclined to say I’ve MS and that’s that. Do you to most people? You must be so fed up. Is your instinct MS? I’m going to look up HSP but doesn’t that mean someone else in your family has to have it if it’s hereditary?
Kel, FND is a functional neurological disorder which means you get the symptoms but have no damage - look at this site www.neurosymptoms.org
Dx
Hi, sorry I haven`t replied before now…only just read your reply to mine.
You ask why I cant get a dx............well they want to see more evidence on tests such as MRI/LP/EMG. Having seen a steady progression of problems doesnt seem to be enough.
I am going to ask for a referral to a top MS doc in Leeds, next month.
Yes, in my gut I do feel it is PPMS. Plus I`d much rather have that than HSP, as HSP carries a 50% chance of being passed down to my kids and grandkids.
Oddly, although it is hereditary, I could be the one who starts it by having mutant genes. Weird, innit?
