Anyone with a pevious diagnosis of ME??
06 Sep 2013 at 12:01PM
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.
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.
06 Sep 2013 at 12:02PM
...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
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
06 Sep 2013 at 2:19PM
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.
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.
06 Sep 2013 at 2:34PM
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.
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
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
06 Sep 2013 at 4:04PM
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
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 ;) 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.
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
Big hugs out to all on this post and hope the appointments, tests and dx's come through quick for you all
Mick x
06 Sep 2013 at 10:20PM
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
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
06 Sep 2013 at 11:01PM
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
A x
No comments:
Post a Comment