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Anyone with a pevious diagnosis of ME??

Following on from something I have just read on another thread, I am really interested to hear if anyone has, or has ever had, a diagnosis of ME/Fibromyalgia. I was diagnosed with ME a long time ago, and moe recenlty with Fibro, but feel very different now to how I did then. I had none of the tingling etc, although, looking back I did have some weird sensations, but at the time I didn’t really take much notice of them.

Looking back now, and bearing in mind how I’m feeling these days, I am wondering whether I ever had ME or whether it was something else all along.

ME is one of those diagnoses that is given when nothing else fits. I was always slightly sceptical as to my diagnosis, but in the absence of any other explanation, accepted it and got on with my life as best I could.

My mian concern now is that the Neuro I am due to see next week (first appointment, following abnormal brain MRI) will see the previous diagnosis of ME/Fibro and put everything down to that without doing any more investigations. Then, if I insist on further investigation, I will be labelled as a hypochondriac. Such a horrible situation, but am expecting it and preparing myself for a battle, as I know I’m not right and that it’s different to how it was years ago. I just hate it when doctors see the ME and just shut down and attribute everything to that.

Interestingly, looking back now I can see that my symptoms would come and go for months at a time, leaving just an underlying fatigue and slight balance issue. Each time the symptoms would be slightly different, and each time they disappeared the fatigue and balance issues that lingered seemed to be slightly more prominent.

I would be really interested in hearing from anyone else with a diagnosis of ME who is now experiencing other things, or has a diagnosis of MS or something else.

…sorry about the typo in the title of this thread. No idea how to edit it!!

Purpledot I was diagnosed with ME when I was a spry little youngster at uni. Went through two and a half years of hell until they finally diagnosed me just as I was getting better!!!. The thing that annoys me with ME is that there is no test for it and its only ‘diagnosed’ after all tests come back clear!. Bearing in mind I never had an MRI or anything MS related its now that I’m being Investigated that I wonder whether it was ME or the first signs of MS?!? My symptoms were different with the first bout at uni. Mostly it was extreme fatigue and very VERY sore skin so much so that I couldn’t put clothes on my top for nearly a month!. Never really noticed any more of the more MS related symptoms but that could be because I was at uni, young and not really taking much notice??? Since uni on and off I’ve always had ‘tired’ periods or wobbled on my feet, but never enough for me to worry about or go to the doctors Mick

That’s really interesting…your story is very similar to mine. I never had any tests, apart from the usual bloods, and it’s only looking back now that I can see some sort of pattern in everything that doesn’t fit with the ME.

I became so disillusioned with disinterested doctors that I just stopped going and got on with it. It’s only since November, when I have become so much worse, that I have been forced to go and get help.

Thanks for your reply, Mick.

Hi Purpledot, we message on foggy friends.

You already know my situation is similar to yours at the moment. I had a lumbar puncture 3 weeks ago after having an abnormal mri scan and i am waiting for the results.

I like you started being ill about 13yrs ago and got a diagnosis of m.e. I have always been sceptical of this because it’s just a diagnosis after nothing can be found. Some things never added up and that’s why i was never 100% convinced i had it. Most people with m.e can’t touch alcohol and i still could when i was up to it. I am the same purpledot my symptoms are different now to the beginning and i also had attacks and then was okish again for a few months. Last november i woke with horrendous vertigo and headaches and i was really ill for months and then gradually got better but not back to how well i was before.

I just want the results and know for sure once and for all. I don’t know how i will feel if i have but i have already prepared myself for having it because somethings obviously going on because of the 5-6 lesions on the brain scan.

Hi Purpledot,

I think there are quite a few of us here who have had the M.E/Fibro/CFS diagnosis. I am one of them.

I was diagnosed with ME about 13 years ago following a clear MRI scan. I was never convinced, but the neurologist I saw was so horrible, I didn’t want to pursue things further, and accepted it, and got on with it, as best I could.

A couple of years ago I developed visual problems and following a scary opticians appointment, I was referred to Opthalmology, and from there to a neurologist. He suspected MS straight away, but things got complicated due to some other findings on the MRI. I eventually got a diagnosis of MS early this year, but, I’m still waiting to be told what kind of MS I have! (was told I’d be seen again in May/June, but appointments running 4-5 months behind) Though I was told it was ‘mild’!

I hated the M.E label. When I said to my GP at the time that I didn’t really know what ME was, he laughed and said neither did he! Everything was put down to that, or anxiety/stress. I’ve had several ‘close call’ health scares where I’ve ended up in hospital, emergency surgery, the lot! because the doctors had put it down to just another M.E symptom. I felt written off by my GP’s and gave up seeing them as much as possible, prefering to cope alone as much as possible. It took a huge toll on my life in so many ways!

I don’t suppose that’s helped you much! But, I think there are probably alot of people walking around with a wrong diagnosis, or no diagnosis, and it can take a lot of time, energy, persistence, and luck to finally get sorted!

I wish you the best of luck

Bxx

This is really interesting. Thanks, guys, for the replies…and Zipster, we meet again!!!

It does seem that a diagnosis of ME is used when there is no clear evidence pointing to anything else, and it’s frightening how many of us are struggling on with this diagnosis, putting up with serious and debilitating symptoms and yet not getting any help, understanding or support from the medical profession whatsoever.

I can remember when I went in for routine surgery years and years ago, and I took 2 days to come round properly from the GA…the nurses just laughed at me and nicknamed me “Sleepy Head”. Nobody bothered to check my notes to find out why it had effected me so badly. It was a horrible experience, and I ended up lying to them and telling them I felt fine just so I could go home.

I just hope the Neuro takes me seriously next week…am getting more and more nervous the nearer it gets, as I am so used to not being taken seriously, not being allowed to explain things properly and just being fobbed off with “Well, that’s all part of the ME, you know!”. It comes to something when part of me wants to be diagnosed with something else, just to get the support, understanding and vindication I have been desperately seeking all these years.

Good luck everyone with all your tests, appointments etc. xx

I’m awaiting my first neurology appointment after thorough bloodtests all came back clear. The one hint of a diagnosis that the GP mentioned was ME. I didn’t really go into that though as, having (secretly :wink: been coming here and getting informed, I thought it better to wait and speak to the neuro. It is concerning though how ME and anxiety get used as ‘explanations’. Not very scientific to diagnose people with things that doctors don’t seem to really understand, is it? I am determined to ask ‘why’ about all if my various, random symptoms and expect an intelligent answer! I’d rather get a diagnosis that is clear, even if scary and life changing, than a pseudo-diagnosis which leaves me in the dark.

Agreed reiki. I’m the same. When I was diagnosed with ME I was young and just accepted the doctors word but now it’s affecting my life to such an extent I want to know just what is stopping from living my day to day life so much!! Big hugs out to all on this post and hope the appointments, tests and dx’s come through quick for you all Mick x

Hear hear! xx

Another one here I’m afraid. I was diagnosed with ME in 2008 after 5 years of being unwell. The trouble was that I then couldn’t get my GP to take me seriously about any new symptom as he would put them all down to either anxiety or ME. I finally went private for a neuro appointment (2010) and last year was diagnosed with MS.

I hope you have a neuro as good as mine PD. I was quite sceptical at first because he didn’t listen to anything I said about my ME. I now realise that he wanted to keep a completely open mind until he saw the evidence from various tests.

I really would hang fire until you hear what he has to say, but at least you know that you’re not alone.

For what it’s worth, I get most of the ‘definitive’ ME symptoms including extreme fatigue, PEM (post exertional malaise) and postural hypotension (POTS) so I was quite sceptical about my MS diagnosis. I didn’t realise that they can also be part of autonomic dysfunction, which can be caused by MS. I’m still on a few ME sites on FB and it really does concern me when people talk about symptoms that are also typical of MS as being ‘normal’ for ME (I have 5 friends with an ME dx who are now being tested for MS).

Mags

Funny how you say about anaesthetic Purpledot but when I had an op last year I couldn’t wee for about 12hrs post op as I had no sensation at all, was scanned and got told I had huge bladder and would be catheterised but eventually went just by sitting on the toilet I had no actual sensation of needing to go or actually going. That went on for nearly a week so I just took myself regularly to the toilet until sensation came back. I told the staff who just said it was odd A x

Auntiemogs - this is so interesting, and not at all surprising! I, too, have read things on ME forums about certain symptoms and felt very sceptical that they were ME related.

I do appreciate that a lot of symtpoms could be ME or MS or something else similar, and it must be very hard for doctors to come up with a definitive diagnosis in quite a lot of cases. However, I, as you, have had enough of everything being attributed to the ME and no help, advice, support or treatment being offered as a result of it being the ME.

I have had balance issues for over 20 years that became much more severe in November. My GP took until April to, very reluctantly and on my gentle persistence, refer me to ENT, and it was only a lovey ENT guy who referred me for a brain MRI. My GP kept insisting that it was just being caused by my ME/Fibromyalgia and just didn’t want to do anything about it. Now I have an appointment with a Neuro (arranged by the ENT guy following the MRI result) my GP hasn’t mentioned the ME since and his new stock phrase is “Let’s see what the Neurologist has to say first, shall we?”. It’s soooo frustrating and exhausting trying to make someone listen and take you seriously.

arwen - that sounds horrendous. Most nurses etc have absolutely no knowledge of things like ME, Fibro etc, which can be so humiliating and frustrating for us poor patients. I fell downstairs a few months ago and ended up in A&E with 2 badly sprained ankles. They wanted to give me crutches but I had to refuse them as I can’t put weight on my hands/wrists/arms and, with my balance issues too, it just was not a viable option. They were really weird about it!

Ah well, these things are sent to try us!

Good luck to everyone on this long, frustrating journey through Limboland xx

Thanks for this post , read with interest as I too have a diagnois of ME and more recently one of Fibro confirmed by a Reumatologist two weeks ago , although have felt very different over the past year - with an increase in "weird "symptoms .

I can totally identify with every one of you regarding the GP`s attitude about attributing everything to ME , stress or the fact that I have 4 children ??? I was diagnosed with ME in 2007 but as it took so long to get anywhere I ended up going privately via BUPA to an imunologist quite some years ago now and then on through the NHS with the same specialist . Now , like many of you I am very much worse now that I was even two years ago and have very strange “episodes” of numbness in my toes , creeping numbness/sensation in my legs , being unable to get out of bed , or walk in a straight line . Many visual disturbances , blurriness and feeling like my eyes , brain and body are simply not connecting - resulting in becoming totally confused by even simple tasks ?? I wont go over everything because its all been said above , and all applies to me , except with one difference . I have the Epstein Barr virus still showing up strong in any blood tests and it was this that led to my initial diagnosis of ME … does /did anyone else have this too ??

Im sure I have read that recent research shows that many people who have had the EBV virus do eventually go on to have an MS diagnosis and that there is a definate link ? Does anyone know any more about this , have experience of this ?? I am seeing a neurologist this Thursday 12th Sept , and am very nervous - not about the actual meeting , but about the though of having to have an MRI as I have extreme claustrophobia - yes I know , Im being a bit silly , but I honestly dont think I could go through with it !! Can anyone relate to this and tell me - is this the only way they can make a definitive diagnosis ?? I would so rather there was another way !! Anything …

Like a lot of you Im almost hoping for an MS dianosis so that I can put to rest the ME label and all the dis-beleif that goes along with it … a hidden illness is so hard to deal with because of other peoples attitudes , let alone that dished out by many GPs - though I have more recetly come across very young doctors who tell me they are being taught about ME/Fibro in med school . Theres hope for us yet LOL !! ??

Thanks and hope Im not rambling too much . Its late and my poor brain and body are out of energy and common sense . Good luck to everyone facing uncertaintly either with ME, Fibro or MS . x

Hi Jezzy I have had epstein barr virus as a teenager but levels not been tested since A xx

Thanks for all the new posts! Gosh, there are more of us than I thought! I’m not sure whether that’s comforting or scary…a bit of both, I think!

I do have a lot of the ME symptoms to some degree or another, but there are some subtle differences. For instance, my fatigue isn’t always PEM…I can be doing nothing and having done nothing and a wave of fatigue will wash over me and I just have to go and lay down. The ME fatigue is supposed to be exacerbated by exertion, which mine is, but not always and exclusively. I also have major balance issues, different and more significant than is expected with ME. There are also a lot of other symptoms that do not tie in with ME that have come on more recently, which have convinced me even more that there is something else going on.

I wonder if you can have ME/Fibro alongside MS?

Keep fighting, lovely people! xx

Jezzy,

Epstein Barr Virus has been linked with quite few medical conditions, -and I think that some theories of MS have considered certain viruses, including EBV, may be a potential trigger for MS - but no definite evidence has been found as yet. I think I read somewhere that EBV is slightly more common among people with MS than the general population. But even among the general population, Epstein Barr is extremely extremely common - by 5 years old, 50 % of the population has been infected, and by adulthood, 90 % of people have been exposed. if you were to test random people on the street, you would expect around 9 out of 10 people to have that tests that show they had been infected at some point in their lives. I think it would therefore be very unlikely that a neurologist would give it much consideration during the diagnostic process, given that 90% the general population would have the same test results .

I totally understand your concern about it, especially as it led to your previous diagnosis of ME . it may be the fact that in some cases, EBV is a contributory factor to the development of MS - but at the moment there is probably no way any doctor could say this for sure in any particular case - and given the prevalence of EBV in the general population, my best guess it that it is probably not something they will consider in too much detail whilst assessing you for MS.

I do think, however, that it will be interesting to see how research deveops over the next 10/20 years… maybe in time there will be more definite answers about this sort of question xxx

best wishes, i hope you find some answers soon xxx

Jezzy, it may be worth mentioning your problem to the neuro. I know that there are a few ‘open’ MRIs around the country if you really think you won’t be able to cope with it.

Mags

I had glandular fever when I was 17 (I’m 44 now) and I saw an immunologist a few months ago and I tested positive for the EBV virus.

Hi I had a possible ms dx 4 years ago after about 3 yrs of symptoms-even referred to ms nurse as had so many symptoms. MRIs all came back clear so Neuro discharged me saying to get referred back if I neefdefr too but if fatigue didn’t improve (other stuff had) would ne worth seeing me specialist who said you can have neurological symptoms with me so dx would fit. Symptoms are bearable with drugs so will have to see what happens over time Becki