Diagnosed with M.E. over five years ago now. But a new doc has sent me for more tests because he thinks I've been mis diagnosed!!! What else could it be if not M.E.? Has anyone else found themselves in this situation?
I guess the question is, what are your symptoms? It's impossible to say what else you could have without more information.
Hi Zelda,
As you say it's a new doc who has decided you've been misdiagnosed I wouldn't worry too much. How "new" a new doc is he? ie fairly newly qualified, a stand-in ((locum) at the practice?? Assume you're in uk and talking about at your gp surgery??!
If you're having new symptoms is that why he's investigating?
Otherwise, having more tests is not necessarily a bad thing. Never forget that you may have other underlying problems such as thyroid disorder or sle which might not have been screened for initially.
If ever you are unsure , ask the doctor what he is thinking as you have the right to know! If you've been given a request form for a blood test, what does it say on the form as to actual bloods requested and in the "clinical reasons" section??
Please try not to worry to much (not easy I know)!
Hope all goes well! :-)
Are your labs showing something that leads them towards a different diagnosis?
My daughter was diagnosed with ME and IBS two and a half years ago. She had tests done last week and it turns out that she actually has Crohn's disease! Doctors had ignored her symptoms for so long because her blood tests were always normal. The gastroenterologist said that it can be difficult to diagnose as first because symptoms can be so vague. I bet this is the same for other illnesses in the beginning.
Hope you get some answers x
Hi all
thanks for your replies.
i haven't any new symptoms, but they think M.E. might not be what I have. It began on one day...and my life changed forever! Pain like no other in my head...thought I was dying. Rushed to a&e and after extensive testing they told me I had M.E. Sensitive eyes, painful eye sockets, memory issues, concentration issues, crawling skin, burning sensation of skin, extreme tiredness constantly, withdrawal from society, severe depression, aches and pains, mobility issues, now using aids and power chairs, the list goes on and on.
Also have IBS, Fibro, carpool tunnel, diabetes t2, Functional disorder, weak eye muscles, painfull foot spazums, an internal lipoma by a major organ....
Thank you, I do hope so too xx
the doc says that not all symptoms fit the diagnosis of M.E.....
hi, yes in the UK. Thank you for your message. They have sent me for an mri of my brain and full spine...just waiting on results of there findings if any! They haven't given an indication of what they might be looking for, all I know is that they don't think it's M.E. ......
Thank you for your message, I don't have any new symptoms as such, just ongoing really. Have listed some further down thread. Xx
Hoping you get answers soon! What an awful lot you have been through and are having to put up with!
The problem with the illnesses you have is they are generally only diagnosed by a process of eliminating all else. Most of those illnesses are now thought to be part of a bigger problem, currently called CFS/ME!
Sending you my best wishes :-)
I'm with Elmo; they should be clear about what they're thinking. I would press them for the information. After all it's your body and your life!
Doctors can be awful for being enigmatic. Got to drag it out of them. The one I have now's not like that though, thankfully.
That happened to the lady who used to run the local ME group. Turned our both her and her daughter have Crohn's disease after thinking they had ME. They're both better now through diet.
Thankyou....I will let you know when I get the results from the MRI's at the end of this month.
I have a lump that has come up on the side of my eye lid tonight. it first felt very sore like a scratch or burn, and now a few hours later it's formed into a lump under the skin, still feels sore to touch! There's always something! Never a dull moment!! X
yes I will be asking lots of questions at end of month when they have results!!
My diet is probably another issue! For some reason, on evenings I have been binge eating, I think trying to get a sugar fix, but because I haven't any sugary snacks I've been eating cereal with sugar or toast with jam. I know I'm not supposed to eat anything like this but I cannot stop. It's very hard to explain. I've never had a problem with over eating before. It's always on the evenings I have this problem. I think it may be loneliness? I asked for help on this over two years ago but never got any! Now it's become a really bad habit. Gggrrrrr. The only way I escape it is to go to bed real early! And I don't always go to bed early so just an ongoing horrible round about that I can't get off.......
I struggle with this, as well. The only thing that works for me is, first, not having any junk food in the house. And second, having healthy items on hand so when I get those cravings, I reach for a bunch of grapes instead of a bunch of cookies (biscuits).
Ive tried this, and have a much healthier fridge than I used too, but after eating a banana or Apple I still have the craving so eat my sons weetabix with sugar or have toast with natural jam...I need a trigger to stop me doing this! I'm not hungry...I just can't stop it!! Thankyou for sharing, I feel so alone with this issue!!
I also have IBS and diabetes type 2, although I'm underweight and the nurses are coming round to weigh me regularly to see how fast I'm losing it. I weigh less than when I was a skinny 14 year old and I don't know why!
I've always been thin but this is ridiculous.