How do I know they have diagnosis correct

I have been diagnosed with me since 2011, I use Gabapentin for pain relief. How can I be sure they have my diagnosis correct and it’s me and not ms?

Hi. All I can say is, they don’t diagnose MS on a whim. There is a rigorous testing process, including mri scans showing demyelination, lumbar puncture results and perhaps evokes potential tests. A criteria has to be filled before a neurologist can diagnose and I can only assume that if you have a formal diagnosis of MS then you must have met that criteria. HOWEVER, the medical world isn’t infallible and if you have concerns then you are quite within your rights to discuss these with your neurologist and/or your GP.

most people with M.E. are diagnosed because the criteria of the illness matches. MS is a long road to diagnosis and you have to have specific test results.

my daughter was diagnosed with M.E. after a stressful time in her life and also a very nasty bout of pneumonia. 2007 she was diagnosed. she had MRI but nothing came of it. i was worried at the time obviously because i was also at the time going through diagnosis. BUT she was different to me.Her symptoms did not follow mine. hers was overwhelming fatigue and she would barely get out of bed and was bedridden for a time. she couldnt recover quickly from any form of exercise.

she didnt have pain per se, but developed fribomyalgia which she reckons is now worse then the M.E. finding huge relief with cbt oil.

However, now with cbt and lots of determination she is back and working. she still has days when she feels she may crash but she is a lot better. she runs her own cleaning business now. which is amazing when she couldnt for a time even get out of bed.

the symtpoms are similar but not quite the same. if your not sure then go back to GP and ask to see neurologist again.

sorry i hope i understood what you asked, i am sure you wrote me, which to me is M.E and you are worried you could have been misdiagnosed and it should be MS?


The replies by Cherry Tree and CC are correct.

MS is only diagnosed following specific clinical evidence being seen on MRI, lumbar puncture and neurological exam (which basically prompts the neuro to order tests).

So if you’ve not seen a neurologist, but are very concerned that you may have been misdiagnosed, you need to persuade your GP of this first and get them to refer you to a neurologist.

Try listing all your symptoms from as far back as you can remember. Put rough dates on them. Indicate how long symptoms have lasted and whether any have improved.

Just keep in your mind that MS (and ME for that matter) have a great number of symptoms which are shared with other diagnoses. So, while it’s possible that you’ve been misdiagnosed, it might not be ME or MS. Just keep an open mind and try not to worry.


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