ChookityPop
Senior Member
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Have you tested TS-HDS and FGFR3?nothing to this day could be find. ana, ena panels ,crp, sedimentation, all negative. idiopathic thay say if you believe.
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Have you tested TS-HDS and FGFR3?nothing to this day could be find. ana, ena panels ,crp, sedimentation, all negative. idiopathic thay say if you believe.
Can I ask how you was diagnosed with LEMS?That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.
Can I ask how you was diagnosed with LEMS?
how yours was diagnosed?
no. I don't think my doctors even know what are they 😀Have you tested TS-HDS and FGFR3?
Thanks for sharing!I know you were asking @Belbyr but in case it is helpful, I was diagnosed with LEMS in 2016 due to testing positive on multiple tests for N-type Calcium Channel autoantibodies, plus abnormal EMG & Nerve conduction testing, plus my symptoms of muscle weakness that were affecting my body & lungs (at that time). It was at that point that my official diagnosis switched from ME/CFS to LEMS.
Those antibodies are recognized in some countries/places and some patients get treated with IVIG. Im not one of the lucky ones sadlyno. I don't think my doctors even know what are they 😀
Can I ask how they diagnosed you with LEMS?That’s what I always thought about myself too. I’ve just learned I have LEMS, but I’m negative for the autoantibody that causes it. I wished I could understand why autoimmune testing is so bad to this day. Dr Brent Goodman at Mayo says he’s always retesting his patients on follow up visits because of how poor the testing is.
Hey, @Belbyr
There are a couple of folks on this thread, me included, who would love to know more about how you were finally diagnosed.
When you feel up to it, I hope you will let us know.
I hope this diagnosis has allowed for an effective treatment plan and good prognosis. You searched long and hard for answers.
N-type calcium is the same as VGCC-N? I have tested VGKC, VGCC, CASPR2 and LGI1. But VGCC-N is something else?
After being sick for 17 years if it was LEMS, I figured I would not be able to climb stairs or pick my 80lb dog up and into the truck.