Hi guys, I thought I was the only one in this position but all of a sudden I see several posts on the same day containing ME/CFS! I hope you don’t mind me giving some background to my experience because I would like to find others in the same position - I thought I was alone in this… In 2008 (shortly before I accepted redundancy), I was diagnosed with ME/CFS. I had been struggling to keep my job for 4 years but the fatigue and orthostatic intolerance (POTS) finally overwhelmed me. Whenever I went to see my GP my symptoms were either due to ‘anxiety’ or ‘my condition’. I asked him to refer me for an MRI because my mother has MS and he just shook his head and smiled and said ‘you don’t have MS’. By 2010 I was having problems walking, with my balance and with bowel/bladder control (in addition to other symptoms) and following an appointment with my mother present he referred me for a private appointment with a neurologist. I had an MRI which showed lesions on my brain (mainly two - so not enough for a diagnosis). Needless to say he didn’t want to see me again, so I have changed practises. My EP (evoked potentials are fine. I have read a lot about MS and it seems almost identical symptomatically to ME apart from two things: orthostatic intolerance (POTS) - I cannot sit or stand for long without feeling incredibly ill (like I want to either throw up or keel over) and post exertional malaise (any mental or physical stress doesn’t necessarily affect me immediately (as is usual for MS) but can wipe me out for a day or even a week after the event). My Mum has to have a nap in the afternoons to get her energy back but I don’t seem to have the energy to start with. Having a LP (lumbar puncture) soon but not convinced it is MS. Is anyone out there in the same pickle? Would be good to know I’m not alone. This diagnosis stuff seems to take so long and although my neuro still thinks it is MS, I’m not convinced. Margaret 
You’re not the only one! I was diagnosed with ME several years ago, after being tested for MS. I’ve now been told its possible I do have MS after all, and am awaiting further investigations. My GP dismissed my concerns about having MS years ago, I’m sure he thought I watned to have it! I also think that because my sister has it, he considered it unlikely that I did too (which is how I’ve felt really to be honest, I know the stats say its MORE likely if you have a relative, but really? What are the odds?). Many of the symptoms are so similar, at its worst its debilitating and disabling. But its still not consisdered a ‘real’ illness by many. Try and live with it for ten years!
Quote:
I had been struggling to keep my job for 4 years but the fatigue and orthostatic intolerance (POTS) finally overwhelmed me.
hi i am absolutely amazed that you have made this orthostatic intolerance known to me! :o :idea: i have been ill for years with awful debilitating symptoms, the main one being fatigue, which is always much worse when sitting. :? i am amazed that there is a name for this, i just thought i was completely crazy to think that faitgue could get worse by resting. on a recent claim for dla my gp had wrote that i had ME but when i went in to see another gp he could find no definate diagnosis of ME or MS so im slightly confused to say the least but he did note that i had been ill for 7 years. i never have a day where i feel “normal” my head never feels quite right and always feel below par. amongst other things i have pins and needles in both arms and legs, a lot of background pain, bowel and memory issues, electric shock type pain and slight jerks. i have seen a neuro who said its likely ms but mri only showed one lesion so was discharged. i find the fight for a diagnosis ( because thats what it feels like) is too detrimental to my health so am, for the time being just accepting the way i am and living with it the best i can. i have always backed away from going to visit people, such as relatives because once i sit down, well, thats me finished. i would like to thank you for making me aware of this condition, it really makes me mad though that its left down to us to find our own answers to illness and we are often left uniformed, which is where the " i must be going mad" thing comes into my head. i haven’t had a lp but maybe thats what will you an answer. this is a fab site for support and i am sure it will help you. there are lots of great knowledgeable people here wishing you all the best mandy xx
Hi guys. I’m sorry this will be a short one. Feeling a bit ooky! The ME Association has a link to the new International Consensus Criteria for diagnosing ME. May be worth a squint. Will try to write more tomz. Many thanks for letting me know I’m not alone in this nightmare - means a lot to me. Love n hugs. Margaret
Hi, I was dx with ME/CFS 2 years before being dx with MS. My MRI showed ‘some bright spots’ and it was a positive LP which gave me a dx. The symptoms can certainly be very similar and nobody should underestimate the seriousness of ME, which is of course a very debilitating condition. All you can do is hang on in there and wait for more results esp of LP. As MS differs so much for everyone it’s not really worth comparing your symptoms to your mum’s… but must be so difficult for both of you waiting for answers, which I hope you get soon. Take care, Pat x
Hi auntimogs, you most definitely are not alone. I was ‘diagnosed’ with CFS in 2006. I say diagnosed, but CFS is really an exclusion diagnosis, which means you have a pattern of symptoms that cannot be explained by anything else. If something else could explain them (or at least some/most of them), my understanding is that you would not get a diagnosis of CFS. I wish I had never been diagnosed with CFS because it seems to be muddying the waters now. In particular, my ongoing problems with extreme fatigue are not being considered as relevant by my doctors. At the time I was diagnosed with CFS no-one ever raised the possibility of MS because I did not have any of the obvious neurological symptoms. No nerve pain, numbness, tingling, or optic neuritis (although funnily enough, I did have new onset headaches originating behind my left eye… but these were put down to migraine. Hmm.). I DID have problems with balance, dizziness, fainting, memory and concentration, temperature regulation and fatigue. In September 2009 the regular ‘headaches’ I would get behind my left eye, which normally lasted for a day or two then got better, I had a three week period of constant severe eye pain. My vision felt blurry and I had black spots floating in my vision the whole time. I clearly remember sitting down with my GP and asking if this could actually be MS, and while he didn’t quite laugh he did dismiss the idea out of hand. Two months later I had an episode of altered sensation in my right-hand side. It started with just my hand and foot - as if I had slept on them funny. But over two days it spread to my entire right hand side and face, with tingling, electric shock like pains, numbness and weakness. At that point I had an MRI showing three lesions consistent with demyelination. Because my lesion load was low they also did an LP, which showed independent oligocolonal banding. They told me the LP would help to confirm a diagnosis, but I may as well have never had it because it feels like this result has been disregarded ever since! I am at the stage of being diagnosed with a Clinically Isolated Syndrome. No diagnosis of MS because I have, in their opinion, had only one confirmed attack (the altered sensation). My ongoing symptoms, which include new episodes of altered sensation in the other side of my body, and attacks of vertigo so bad I have twice fallen down the stairs and injured myself, have not been considered MS attacks. I have some other symptoms which my neurologist does not think are typical of MS (primarily burning in my face, hands and feet which is accompanied by extreme flushing with sharply demarcated edges - I can trace the line of flushing on my face without looking in a mirror). I also have ongoing chronic muscular pain in by shoulder and ribs, which is getting worse by the week. At times this is so bad it affects my breathing, and even the lightest touch on my back makes me want to scream or vomit. Because of these ‘unusual’ symptoms, my neurologist has referred me to the National Hospital for Neurology. After a 10 month wait I had my appointment and was told I would put on the urgent admittance list to come in for 6-7 days of neurological testing. I was told it would be about 2 months, but when I rang after that point to see if they had more information, was told it might now be up to 6 months. In the meantime, all my other doctors (GP, specialist and physio) have basically given up and told me to come back once we have the results of the tests. I have to fight to get any kind of help from my GP - I finally managed to get put on Gabapentin which has reduced my nerve pain and flushing, and Baclofen which brings my muscular pain to a level that doesn’t interfere with my breathing. I told my GP that I didn’t feel I could cope any longer, and had even been day-dreaming about ways to hurt myself (hurt, not kill) just so I could be in hospital for a while and have a break from trying to cope with everything. He just shrugged his shoulders. So, that’s my story. I hope that you get some clarity and resolution soon. mandy_c x
Bump for Auntiemogs.
Hi Auntiemogs I do hope you’re feeling a bit better today. You’re really not alone in this nightmare. You may have seen a post I put on here about a week ago, saying my Neuro Consultant is referring me to a Consultant who specialises in ME/CFS. This was after at my appointment 6 months previously he suggested PPMS! I’m really not sure where all this is headed, but it sure is confusing!! Thanks so much for mentioning the Orthostatic Intolerance. I’d never heard of this before, but I experience that all the time with the standing/sitting thing. In practice, it means that shopping & standing in queues is getting almost impossible :? There will be an answer for us sometime - I just hope it’s not too long 
Take good care - what a lovely site this is for mutual support. Bren2 x
hunny wrote:
You’re not the only one! I was diagnosed with ME several years ago, after being tested for MS. I’ve now been told its possible I do have MS after all, and am awaiting further investigations. My GP dismissed my concerns about having MS years ago, I’m sure he thought I watned to have it! I also think that because my sister has it, he considered it unlikely that I did too (which is how I’ve felt really to be honest, I know the stats say its MORE likely if you have a relative, but really? What are the odds?). Many of the symptoms are so similar, at its worst its debilitating and disabling. But its still not consisdered a ‘real’ illness by many. Try and live with it for ten years!
Yay! Have just discovered the ‘Quote’ button! 
Hunny, thank you for your reply. Looks like we are in the same boat! The symptoms are so similar I sometimes worry that whatever I’m eventually diagnosed with(ME/MS), I’ll never be sure it’s the right one (there’s no pleasing some) :lol: ! At least with a diagnosis of MS there is access to treatment that simply isn’t there (yet) for ME. Hopefully things will soon change. Scotland seem to be adopting the Canadian guidelines for diagnosis of ME/CFS and there was quite a nice piece on the tellybox the other day (about 4 minutes in) ITV West: Full programme | ITV News West Country so fingers crossed. Let me know how your diagnosis progresses. Hugs, Margaret xx
mandymary wrote:
Quote:
I had been struggling to keep my job for 4 years but the fatigue and orthostatic intolerance (POTS) finally overwhelmed me.
hi i am absolutely amazed that you have made this orthostatic intolerance known to me! :o :idea: i have been ill for years with awful debilitating symptoms, the main one being fatigue, which is always much worse when sitting. :? i am amazed that there is a name for this, i just thought i was completely crazy to think that faitgue could get worse by resting. on a recent claim for dla my gp had wrote that i had ME but when i went in to see another gp he could find no definate diagnosis of ME or MS so im slightly confused to say the least but he did note that i had been ill for 7 years. i never have a day where i feel “normal” my head never feels quite right and always feel below par. amongst other things i have pins and needles in both arms and legs, a lot of background pain, bowel and memory issues, electric shock type pain and slight jerks. i have seen a neuro who said its likely ms but mri only showed one lesion so was discharged. i find the fight for a diagnosis ( because thats what it feels like) is too detrimental to my health so am, for the time being just accepting the way i am and living with it the best i can. i have always backed away from going to visit people, such as relatives because once i sit down, well, thats me finished. i would like to thank you for making me aware of this condition, it really makes me mad though that its left down to us to find our own answers to illness and we are often left uniformed, which is where the " i must be going mad" thing comes into my head. i haven’t had a lp but maybe thats what will you an answer. this is a fab site for support and i am sure it will help you. there are lots of great knowledgeable people here
I’m glad I’ve been some help Mandy. There are quite a few blogs on YouTube. If you put in POTS you should find some of them. Let me know how you are getting on. I agree, it’s too much sometimes, fighting for an answer. I don’t think you’re going mad hun, 'tis just the way we’re treated. Take care, Margaret xx
Patb wrote:
Hi, I was dx with ME/CFS 2 years before being dx with MS. My MRI showed ‘some bright spots’ and it was a positive LP which gave me a dx. The symptoms can certainly be very similar and nobody should underestimate the seriousness of ME, which is of course a very debilitating condition. All you can do is hang on in there and wait for more results esp of LP. As MS differs so much for everyone it’s not really worth comparing your symptoms to your mum’s… but must be so difficult for both of you waiting for answers, which I hope you get soon. Take care, Pat x
Hi Pat, thank you for your reply. Sounds bizarre, I know, but can’t wait for my LP! :o Take care hun, Margaret xx
mandy_c wrote:
Hi auntimogs, you most definitely are not alone. I was ‘diagnosed’ with CFS in 2006. I say diagnosed, but CFS is really an exclusion diagnosis, which means you have a pattern of symptoms that cannot be explained by anything else. If something else could explain them (or at least some/most of them), my understanding is that you would not get a diagnosis of CFS. I wish I had never been diagnosed with CFS because it seems to be muddying the waters now. In particular, my ongoing problems with extreme fatigue are not being considered as relevant by my doctors. At the time I was diagnosed with CFS no-one ever raised the possibility of MS because I did not have any of the obvious neurological symptoms. No nerve pain, numbness, tingling, or optic neuritis (although funnily enough, I did have new onset headaches originating behind my left eye… but these were put down to migraine. Hmm.). I DID have problems with balance, dizziness, fainting, memory and concentration, temperature regulation and fatigue. In September 2009 the regular ‘headaches’ I would get behind my left eye, which normally lasted for a day or two then got better, I had a three week period of constant severe eye pain. My vision felt blurry and I had black spots floating in my vision the whole time. I clearly remember sitting down with my GP and asking if this could actually be MS, and while he didn’t quite laugh he did dismiss the idea out of hand. Two months later I had an episode of altered sensation in my right-hand side. It started with just my hand and foot - as if I had slept on them funny. But over two days it spread to my entire right hand side and face, with tingling, electric shock like pains, numbness and weakness. At that point I had an MRI showing three lesions consistent with demyelination. Because my lesion load was low they also did an LP, which showed independent oligocolonal banding. They told me the LP would help to confirm a diagnosis, but I may as well have never had it because it feels like this result has been disregarded ever since! I am at the stage of being diagnosed with a Clinically Isolated Syndrome. No diagnosis of MS because I have, in their opinion, had only one confirmed attack (the altered sensation). My ongoing symptoms, which include new episodes of altered sensation in the other side of my body, and attacks of vertigo so bad I have twice fallen down the stairs and injured myself, have not been considered MS attacks. I have some other symptoms which my neurologist does not think are typical of MS (primarily burning in my face, hands and feet which is accompanied by extreme flushing with sharply demarcated edges - I can trace the line of flushing on my face without looking in a mirror). I also have ongoing chronic muscular pain in by shoulder and ribs, which is getting worse by the week. At times this is so bad it affects my breathing, and even the lightest touch on my back makes me want to scream or vomit. Because of these ‘unusual’ symptoms, my neurologist has referred me to the National Hospital for Neurology. After a 10 month wait I had my appointment and was told I would put on the urgent admittance list to come in for 6-7 days of neurological testing. I was told it would be about 2 months, but when I rang after that point to see if they had more information, was told it might now be up to 6 months. In the meantime, all my other doctors (GP, specialist and physio) have basically given up and told me to come back once we have the results of the tests. I have to fight to get any kind of help from my GP - I finally managed to get put on Gabapentin which has reduced my nerve pain and flushing, and Baclofen which brings my muscular pain to a level that doesn’t interfere with my breathing. I told my GP that I didn’t feel I could cope any longer, and had even been day-dreaming about ways to hurt myself (hurt, not kill) just so I could be in hospital for a while and have a break from trying to cope with everything. He just shrugged his shoulders. So, that’s my story. I hope that you get some clarity and resolution soon. mandy_c x
Oh Mandy. You are really going through the mill. Can your GP not try to speed things up for you (it sounds like you’re at the end of your tether hun)? Everything seems to take an age with this. I’ve been unwell for 7 years now and if I hadn’t taken Mum with me to see my GP I would still be going round in circles. I’m glad that at least he has given you something to help with the pain (the least he can do), so at least he’s aknowledging that. I know it grinds you down having to fight so hard for a diagnosis and I think It’s ridiculous that we have to wait so long for an appointment but you’re on that list now and hopefully you will have some answers soon. You can always PM me if you fancy a chat and I’m on Facebook (Margaret Burton - piccie of me with ma pusskin). Take care hun and let me know how things are going. Big hugs, Margaret xx
bren2 wrote:
Hi Auntiemogs I do hope you’re feeling a bit better today. You’re really not alone in this nightmare. You may have seen a post I put on here about a week ago, saying my Neuro Consultant is referring me to a Consultant who specialises in ME/CFS. This was after at my appointment 6 months previously he suggested PPMS! I’m really not sure where all this is headed, but it sure is confusing!! Thanks so much for mentioning the Orthostatic Intolerance. I’d never heard of this before, but I experience that all the time with the standing/sitting thing. In practice, it means that shopping & standing in queues is getting almost impossible :? There will be an answer for us sometime - I just hope it’s not too long
Hi Bren, U r welcome hun. I find moving around a bit helps when standing but being horizontal is even better! Yes, this is a lovely site for support and now I have discovered the magic ‘Quote’ button I shall hopefully be a bit more supportive! YouTube has some good video blogs on POTS (Postural Orthostatic Tachycardia Syndrome) which might be useful to you. Take care hun, Margaret xx
I have a best friend who was diagnosed with CFS, in her notes it actually reads as psychosomatic, but finally, thank goodness, they diagnosed her with MS. Not glad to be ill but glad to know what you are fighting.
I currently have a diagnosis of CFS but my dr says he thinks it’s psychological which I was furious about and I have actually told him when they find out what’s wrong with me he will apologise. I saw a psychologist which helped a bit with the stress of multi neuro symptoms, I am now waiting for delivery of an electric wheelchair and hopefully getting a WAV car.
What I wanted to say is that there seems to be a bit of unfairness in the way people are treated with these different diagnoses. I have found not only is CFS treated as a phsychological problem but it is not thought of as bad as MS. This is ridiculous because I am far worse physically than many people I have met with M S or CFS and I think we need to be more open to supporting all the people with neuro problems. I have to use an electric chair knowing my dr thinks my prob is psychological. How do you think that feels? Absolutely soul destroying :'(…I will insist on seeing a neurologist soon but want to wait till I am a little better which I know is the wrong way round but I feel emotionally very low at the moment. x
just read this and Im amazed be it all, was d with cfs 3yrs ado, after seeing 2 neuro from walton, 1st dx me after a few reflex test, 2nd did mri found a broken vertebrae t 4 also dx cfs, I have gone through 3 yrs of hell and now need a wheelchair, my latedt dx is fibro, got dx by phycologist with fibro,I just dont fit all the criteria for either illnesses
I believe that both ME and MS are very similar symptomatically. I never thought that I would be diagnosed with ME/CFS as my symptoms were not viral in origin, however I was told this was not the case. I still think I’m more likely to have MS than ME but from what has been said it’s just as dificult to diagnose MS as ME so perhaps now I have some kind of diagnosis and whilst I’m feeling OK I should not pursue it. Either way neither are nice to have and I notice the differences in my health so regardless of what the diagnosis is I feel horrible. Hope everyone feels better soon and Thanks for the information- very interesting
Hiya I know it’s been ages since this thread was posted on but I thought I would put some useful info on and see if anyone has been told the same ? Last week I saw neuro and was told basically that I have a Funtional Disorder . I have tons of symptoms that I identify with MS so many it’s scary but since she told me it has put things more into context. When I went to see her I had obvious limp on my left side and having trouble walking etc. As my reflex tests all normal she said not any damage but my brain not sending right signals to rest of body etc. I also have been told have Atypical cfs. I am being referred to a movement specialist to investigate further my spasms and jerks, but would be good to hear from anyone who has function disorder or in similar situation. Thanks T xx
Tatty - if you’re still on the forum - and anyone else with ME/CFS: My GP suspected ME but my neurologist waved that idea away and after an MRI that was ‘within normal limits’, diagnosed me with Functional Neurological Disorder in January this year. However, chronic fatigue is one of my symptoms and the treatment path I’ve been given is a 9 week Chronic Fatigue group therapy course (for which I am still awaiting a start date). The specialist OT that I saw confirmed my Chronic Fatigue Syndrome diagnosis. Now, FND seems to be an umbrella term. I’ve joined the private facebook forum via www.FNDhope.org and looked at the site my neuro gave me (www.neurosymptoms.org) and joined the ME Association,gaining some useful information to help me cope. I have a lot of symptoms that still tick MS boxes so I’m not yet 100% convinced that it isn’t a physical, organic problem even though all my tests have apparently come back clear. My symptoms got worse in March. I’ve started waddling like a duck, finding walking increasingly difficult and have got myself a stick. My eyebrow and lid have dropped (apparently overactive facial muscles) and I get episodes of ‘spacing out’. The only medications I’ve had were one for the dizziness before my neuro appointment but it didn’t work. I’m only on a laxative for IBS. Help is slow in coming. The OT gave me a course booklet but that only helps so far…plus I’m finding it harder to absorb information and create regular coping strategies. So, I’m still popping in here from time to time because I’m finding it hard to shake the gut feeling that these health disruptions are down to MS after all.
I have been ill for nigh on 30 years, and have picked up diagnoses of ME/CFS, Fibromyalgia and Vestibular Decompensation along the way.
I have been tested for MS, but, apart from multiple ‘non-specfic’ lesions on my brain, all tests were within normal limits.
I have now been dismissed with a “working diagnosis” of Vestibular Decompensation by my Neuro, as balance issues are one of my most dominant symptoms. My Neuro would not commit himself as to whether he thought the ME/CFS and Fibro diagnoses were accurate or still applicable, so I have no idea if they are or not, although I do have some symptoms that would fit.
My GP told me 2 days ago that I need to stop looking for answers and accept that I have a chronic condition with disabling symptoms and that they don’t know what it is and probably never will. He doesn’t seem to care that I am getting worse and am having new symptoms every few months. He is not supportive of me seeing any more specialists or having any more tests. My physio is furious and is writing to him to try and persuade him to refer me to the Neuro hospital in London, and to send me for a MRI of my lower back in view of my worsening leg symptoms. I’m not holding out much hope, but we can but try. Both my physio, the guy I see at the Balance Clinic, and even my thyroid consultant (I have thyroid nodules) have all said that there is something more going on and that I should seek another opinion, but I have a feeling my GP won’t budge. I think I may tell hm what my thryoid consultant said (he’s a very eminent local surgeon) and see if that will urge my GP to do something, even if it’s just to save face!
I blame my original ME diagnosis (made at the Royal Free in 1991) for not getting any help for so long. Once you have that label, everything is attributed to it and nothing is done. I have also always felt my notes probably have had “Hypochondriac” written across them in big red letters for many years! It is only in the last 18 months, since my symptoms have got significantly worse, that I have managed to at least get some tests and see a Neuro (I think my GP and physio both suspected MS).
It is so exhausting having keep fighting for answers and help, but we must all keep going and keep these docs on their toes.
Love and hugs to everyone in Limboland and going through such a frustrating journey xxxxx
Purpledot - I’d change my GP if I were you! The help, support and treatment is really more important than the labels we’re given - unfortunately, treatment seems to depend heavily on the labels. The diagnosis is like a key, opening or closing doors. With my FND/CFS diagnosis, I still feel partially in limboland but at least I have some keys. They may or may not be to the right doors and all I can do is to step through them and see. Best wishes (and many Spoons!) to all of you in similar positions x