Forum

Misdiagnosis of fibromyalgia

I think I’ve been misdiagnosed with fibromyalgia for the past 3 years. After trying all therapies and treatment for fibromyalgia and not getting any results I decided to spread a wider net on my research into what could possibly be ailing me and I think I’ve cracked it… All my symptoms mimic MS. I’ve had investigations and MRI’s in the past couple of years due to severe hemiplegic migraines suspect of tmi which show a lot of white matter lesions, I have severe dizzy spells, nightly awakenings with pins and needles in my hands which I’d put down to carpal tunnel, not muscle weakness but more of a deep tissue pain. Occasionally I have lost feelings in my arms and legs. So, I’m now unsure what do next? Do I go the the GP (again!) For an official diagnosis? How does this work? Any advice would be greatly appreciated X

Sorry Lainey to confuse your prognosis again but do you know about Sticky Blood ApS. I’m only going on your migraine; apart from severe migraines it mimics MS symptoms and causes lesions, see http://aps-support.org.uk/

George

Hi Lainey

Yes, I would go back to your GP.

If you were to write down a diary / timeline of what symptoms you’ve had, how long they’ve lasted, whether anything has completely resolved or just stayed with you, you could take this with you to the doctor. See what they think.

You could as George has mentioned say that APS has been suggested, or ask whether the doctor thinks you should be re-referred to a neurologist. I wouldn’t say that you have strong suspicions of one diagnosis or another (doctors prefer a list of symptoms and to do the diagnosing themselves). But it does sound like maybe you need to get your symptoms checked out again.

Sue