Hello everyone, Please forgive my anonymous post, but I am a bit embarrassed on here as I do not have a diagnosis. Could I possibly ask, how many of you were diagnosed straight away with MS and how many were fobbed off with FND, ME, CFS because nothing could be found with the tests they do. Cheers
Don’t be embarrassed Anon, that’s just what this forum is for.
I was diagnosed with anxiety/depression/ME/CFS for 9 years before I got my MS diagnosis (because nothing showed up in bloods and GP decided all my symptoms were psychological).
I have several friends who have diagnoses of FND &/or ME/CFS who have/are being tested for MS.
Are you having a problem with your GP?
Hi Anon. No need to be embarrased! There are many if us here in ‘limboland’, that is, without a diagnosis but suspecting ms, either through our own intuition/research or through having been told by someone that it is a possibility. I’ve not yet been diagnosed (off to see the Neuro next month) but my GP seems pretty convinced that my symptoms are CFS/ME but did say that that is a diagnosis of exclusion…so if the neurologist doesn’t find anything, that is the label I’ll get. Doesn’t seem very scientific to me - the lack if proof being the proof they use to diagnose with. The best advice I’ve got from here is using a symptom diary and presenting an abbreviated version to the medical professional. List no more than five main symptoms. Wishing you all the best on your journey
I know what you mean about feeling embarrassed. I too don’t have a diagnosis, and it’s all quite overwhelming isn’t it.
I suspect MS, but I didn’t mention this to the GP, and she referred me to neuro immediately. As I have private healthcare, then I’m very lucky to have seen a neuro already last week, and I had an MRI on Friday. I get to see the neuro again at the end of this week for the results. I haven’t mentioned MS to him either, and I’m wondering what will be found, and if he’ll say it’s anxiety or ME. If so, I’m going to push further if that’s the case. I’ve been reading about MRI slice sizes, and with / without contrast to detect newer leisions, so I’d start with that route if nothing shows up??
All the very best with this anon. I’m new here, and I’m finding it a great help just to come here
H there Anon! I have been living with a diagnosis of ME/CFS for over 20 years, but have never been fully convinced if its accuracy. My symptoms have now got worse and lots of new ones have kicked in, and, following an abnormal brain MRI, I am now being investigated by 2 different Neurologists. You’d be surprised how many of us on here are walking round with diagnoses of ME/CFS and/or Fibromyalgia. All I can say is that you know your body better than anyone, and you know when something’s not right. Don’t be fobbed off. Good luck xx
Hi no need to be shy on here…no one is judged by what the medics may say about us folks in limbo land… I have been told I don’t have me/cfs or any nasty neuro conditions…instead I have an unclassified neuro condition with a functional element which they can’t quantify …this makes me chuckle…I think FND is a convenient box to put people in when infact they just don’t know??it’s common…very common??about 30% of people seen in neuro clinics their symptoms cannot be explained and tests are not conclusive??however real FND is rare…generally…FND. dx is over used my drs who are not specialists in this field…they only touch on it in their training…ie neurologyst …other have responded re me/cfs and I thought I would respond re FND I have organic neuro eye probs…organic bladder probs…and many ms like symptoms… you are among friends here… e
Thanks for all your replies everyone! My GP has been supportive, it’s the god damn neurologist who, as you say, can’t find a visual reason for the symptoms, so it must be functional or otherwise. It’s a cruel label to stick on someone’s head, as it means the risk is run to be forgotten about, and no treatment given either. I suppose I should just keep a diary until I see him next, whenever that might be. Thankyou again x
Hi Anon x
It’s frustrating isn’t it!!
Scoobie is right in that very often the medics know it’s a neurological problem but just don’t know what is causing it! Basically it hasn’t got a label they can stick on it - yet! There is sooo much they don’t know about the brain & nervous system that when it goes wrong without an obvious cause they are stumped!
Sometimes, because it’s easier they just blame it on the nearest covenient dx, send you away and hope for the best!
I’ve had pretty well every other possibility ruled out now eg endocrine, haematolological, spinal causes etc etc - and while I have the history & symptoms of MS I just don’t meet the McDonalds criteria at the mo
Luckily when I ask my neuro he insists that it’s absolutely not FND, CFS/ME and my lesions are not due to age, migraine or vascular causes etc etc.
Last time when I kept pushing for a definitive answer - he shrugged his shoulders and said “a few years ago you would have walked out of this office with a ‘Mild MS’ diagnosis - but we can’t do that now” when I asked why he mumbled something about DMDs/criteria etc and said that unfortunately we will just have to play the wait and see game!
At one point he got a little annoyed too and asked why I really needed the label anyway! I said so that I could get the proper treatment - he said I was having everthing he would be willing to prescribe me anyway ie baclofen & neurontin and as these are working a treat for me what is the problem - also he said that I would not be suitable for DMD’s anyway even if I had a positive diagnosis!
I then mentioned the support - and he said to ring his secretary any time & he’ll see me straight away!
So here I am several years down the line still in limbo - but I guess what I’m trying to say is although it’s frustrating - I really wish more neuros would be like mine and explain the situation - explain that they don’t know everything but will treat you as best they can - rather than taking the easier dx options! xxxjenxxx
PS - I meant to add - if a person has the symptoms etc that fit CFS/ME or FND then so be it - that’s probably what it is then! No good trying to squeeze things to fit something else xxxxxx
Hey anon… it is. cruel…and unfair if the Neuro has suggested you see someone re FND then I would as they are more specialised…and if they say it’s not FND then you can get them to write to the neuro … equally there are amny organic conditions etc that can also have an FND element including ms…although this can vary…but if there are organic neuro probs …then the cns can be affected in a functional non organic way…also… if you think about it resources and funding go to the known conditions…which is right…and there’s. not enough to go round…and the lesser known…are neglected re funding…and the ones they can’t put a name to or unclassified…well not sure what to say on these…lol the bottom line though is FND should only be dx when the neuro is absolutely sure it’s. nothing else…it’s not a dumping ground for those who don’t fit the standard/ usual known boxes…yes some people with FND do actually receive an organic dx down the line…am not sure of the stats on this… I would be aware of any new changes or symptoms…has the neuro said he will review you …and when? some neuros will review you or they may discharge you and another gp referal would need to be done if there were changes etc…have they suggested rehab/ physio? e