Mystery

[IrkyDirk]

Hi all. I've been dealing with life limiting symptoms for around 8 years, and have done the rounds with the meds, head scan, nerve conduction studies, multiple blood tests, rheumatologist appointments, all of which have come up with nothing. My symptoms include extreme fatigue and perceived weakness, muscle pain like burning, skin sensitivity. I think I have Gottron's Papules, and some facial rash which comes and goes, also some signs of mechanics hand and small fissures on my knuckle joints but seldom and small. I've been diagnosed with carpal tunnel syndrome in both wrists. I've been told it's ME/CFS, but because of these symptoms, I am thinking it's more likely autoimmune. I've never been happy with the ME diagnosis. As I said, negative blood tests, and the docs are getting bored of seeing me, while the symptoms get slowly worse as time goes on. Has anyone experienced similar? Am I barking up the wrong tree? If be grateful for any insight. Thanks.

[Catpuss66]

I have similar issues for well over a year, I have positive ana & Ro & La. I have asked for 2nd opinion, on hydroxychloroquine which helped with fatigue and itchy scaly, but still rash on hands just slowly getting worse, as is rash on face. Joined Facebook group dermatomyositis , very helpful, lots of people on there not diagnosed, will give you pointers on where to go next. it”s probably an overlap , mild version of 3 autoimmune diseases. Good luck

[fbcburnett]

Certainly sounds like Dermatomyositis, best way to get diagnosed is by having a muscle biopsy arranged by a consultant Rheumatologist experienced in the Myositis group of auto immune diseases. I am under the care of the brilliant Dr Stephen Kelly at the Royal London Hospital (Mile End). Dependent upon where you live I am sure our own Jo Goode will be able to recommend your nearest experienced Consultant. You will also need your GPs support for the referral.

Good Luck,

Colin.

[EbonyEvans]

I had a lumbar puncture. Skin biopsie, EEG and muscle MRI to confirm. I also GLT to chose which hospital. I’m with the Royal Free in Hampstead. As it’s a teaching hospital. And I did my research on the team who are amazing. I look at the illness as not life threatening if treated correctly. And am lucky to have it instead of a terminal illness. We need to be positive. We live in a first world country with great health care. You can do this, it just takes getting used to. Ebony

[stiff19]

Yes I have these symptoms and more and don’t know where to turn as bloods ok and go is a no go