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Article: Is Chronic Fatigue Syndrome (ME/CFS) an Auto-immune Disorder?
- Thread starter Phoenix Rising Team
- Start date
Well after being diagnosed with ME/CFS several years ago and having abnormalities in my blood for most of that time . I think ive only ever had one set of 'normal bloods ' and those were the set i was diagnosed with I now have autoimmune problems .
The abnormal results I kept having prior to this were varied and included , high lymphocytes , low lymphocytes , A typical lymphocytes , low folate , low red blood cell count , low haematocrit, high red blood cell distribution , low eosinophil ,high ESR, plus many other abnormalities I cant remember . The problem I had were they would not be consistent . There would be a few problems each time on my bloods but next time they were tested they could be entirely different problems .
I also cannot do the rhombergs test even with my eyes open my balance is so poor . infact ive many nuerological signs that are also just being ignored .
Ive had loads of bladder problems and blood in my urine on several occasions which indicates to me kidney involvement . Fair enough I get antibiotics but thats not the point it should be investigated thoroughly .
Ive also had many skin rashes infact ive been hospitalised beacuse of them , they blamed it on a virus but didnt know which one bit of a cop out really .
This past 12 months though I have developed autoimmune problems . I was found to be hypothyroid with antibodies so its hashimotos I have also now tested positive on the ANA test twice .
After a bit of a fight I was finally given levothyroxine not that it is making any difference even though im now supposedly back in range and well the ANA test has just been ignored .
Thats the UK for you , doesnt matter how many abnormal results I get once diagnosed with ME/CFS its very hard to turn it round and get an alternative diagnosis.
I have always said I have all the signs and symptoms of lupus and also most of the signs and symptoms of MS . Infact a mix of the two if you like .
Since I got ill I have been saying that there was a problem with my immune system , the rheumatologists I saw were very patronising beacause I didnt quite tick all their boxes and when they couldnt figure out what was wrong with me just discharged me . I was still ill nothing had changed yet they still discharged me . Hence I ended up being refferred to the me/cfs clinic who wernt going to accept me as I kept getting abnormal blood results that nobody could explain . One set of normal bloods though and hey presto diagnosed .I so wish I had known what a diagnosis of ME/CFS actually meant in the UK .
I was naieve , knew nothing about it and stupidly thought oh im finally getting somewhere . Im going to get treatment , get well again , go back to my old life , jobs a good un . Err how wrong can you be . I did the CBT and was actually told they didnt think id really tried with it , in other words it was my own fault I was still sick . Needless to say we parted company as tbh it was like trying to get through to a brick wall , they just ignored abnormalities I pointed out .
Is anybody taking notice now that I have antibodies err no im diagnosed with ME/CFS so thats my label . My GP is trying his best to get someone to listen and help me but its not forthcoming . Nobody wants to know if youve got ME/CFS on your notes . I also have another problem in the fact that nobody and I mean nobody in my family has ever had autoimmune problems , if they had it would have made it so much easier to fight for a different diagnosis .
As it stands im wandering around in no mans land . I do have ME/CFS I meet Canadian criteria but i know with that diagnosis I am never going to get anywhere here in the UK . I thought perhaps I would now have folk trying to help me left right and centre I was wrong . Seems once you have a diagnosis of ME/CFS you can clock up as many abnormalities as you like it makes no difference , theyve already stopped looking !
The abnormal results I kept having prior to this were varied and included , high lymphocytes , low lymphocytes , A typical lymphocytes , low folate , low red blood cell count , low haematocrit, high red blood cell distribution , low eosinophil ,high ESR, plus many other abnormalities I cant remember . The problem I had were they would not be consistent . There would be a few problems each time on my bloods but next time they were tested they could be entirely different problems .
I also cannot do the rhombergs test even with my eyes open my balance is so poor . infact ive many nuerological signs that are also just being ignored .
Ive had loads of bladder problems and blood in my urine on several occasions which indicates to me kidney involvement . Fair enough I get antibiotics but thats not the point it should be investigated thoroughly .
Ive also had many skin rashes infact ive been hospitalised beacuse of them , they blamed it on a virus but didnt know which one bit of a cop out really .
This past 12 months though I have developed autoimmune problems . I was found to be hypothyroid with antibodies so its hashimotos I have also now tested positive on the ANA test twice .
After a bit of a fight I was finally given levothyroxine not that it is making any difference even though im now supposedly back in range and well the ANA test has just been ignored .
Thats the UK for you , doesnt matter how many abnormal results I get once diagnosed with ME/CFS its very hard to turn it round and get an alternative diagnosis.
I have always said I have all the signs and symptoms of lupus and also most of the signs and symptoms of MS . Infact a mix of the two if you like .
Since I got ill I have been saying that there was a problem with my immune system , the rheumatologists I saw were very patronising beacause I didnt quite tick all their boxes and when they couldnt figure out what was wrong with me just discharged me . I was still ill nothing had changed yet they still discharged me . Hence I ended up being refferred to the me/cfs clinic who wernt going to accept me as I kept getting abnormal blood results that nobody could explain . One set of normal bloods though and hey presto diagnosed .I so wish I had known what a diagnosis of ME/CFS actually meant in the UK .
I was naieve , knew nothing about it and stupidly thought oh im finally getting somewhere . Im going to get treatment , get well again , go back to my old life , jobs a good un . Err how wrong can you be . I did the CBT and was actually told they didnt think id really tried with it , in other words it was my own fault I was still sick . Needless to say we parted company as tbh it was like trying to get through to a brick wall , they just ignored abnormalities I pointed out .
Is anybody taking notice now that I have antibodies err no im diagnosed with ME/CFS so thats my label . My GP is trying his best to get someone to listen and help me but its not forthcoming . Nobody wants to know if youve got ME/CFS on your notes . I also have another problem in the fact that nobody and I mean nobody in my family has ever had autoimmune problems , if they had it would have made it so much easier to fight for a different diagnosis .
As it stands im wandering around in no mans land . I do have ME/CFS I meet Canadian criteria but i know with that diagnosis I am never going to get anywhere here in the UK . I thought perhaps I would now have folk trying to help me left right and centre I was wrong . Seems once you have a diagnosis of ME/CFS you can clock up as many abnormalities as you like it makes no difference , theyve already stopped looking !