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3 vascular surgeons believe I have systemic vasculitis, but did not diagnose me, but gave me a referral. A geneticist believes I have dermatomyositis, but I am waiting for an appt. with a Rheumy. These 2 I should get diagnosed hopefully soon…Dr. Diana, as soon as I am diagnosed with Dermatomyositis I will let you know!
I will be happy if I can get diagnosed with these 4 things.
Does anyone else with EDS have Lupus and/or Neuropathy? I have all the signs and I have been right about all of my other diagnoses so far. In the last few months I have had brand new symptoms of a facial rash and muscle twitching. I have also had vertigo and loss of balance that lasts a day and happened if I went from bending over to putting my head up or standing.
Thanks for listening.
MJ
Exciting progress, MJ! You know I’m with your doctor who (strongly) suspects myositis! 😉 Sometimes high intracranial pressure can cause facial flushing that looks just like the butterfly rash with lupus, so caution there! If they don’t find definite positive testing of lupus, sometimes they will call it “presumed lupus” based on presentation. Sadly, sometimes it high intracranial pressure combined with our other junk that sort of mimics lupus. Please keep us posted! 😉
Thanks Dr. Diana. I also have what I believe is swollen lymph nodes – mostly in the neck and back of head, that is why i am thinking Lupus. Do EDSers get swollen lymph nodes that could mimic lupus? Also, my facial rash is bumpy and itchy. I do have flushing as well, but this rash is different from the flushing. Are there any known cases of EDS with Lupus? I have also considered that the facial rash could be dermatomyositis related. Let me know your thoughts! Thanks, MJ.
PS I also have what I believe is a painful, recurring nose ulcer and I am positive I have Erythromelalgia, but I am no where near being diagnosed.
Hi MJ,
I have been tested for lupus too many times to count over the past 25 years but have never been diagnosed with it. I was suspected of having it the first time back in 1990 when I had chronic joint pain, a positive ANA, increased erythrocyte sedimentation rate, and false positive on the RPR (screening test for syphilis). The rheumatologist dismissed the idea of lupus, but due to the 8/9 on the Beighton scale and obvious joint laxity from head to toe, he diagnosed the EDS on the spot.
I now consistently have a high rheumatoid factor (typically >70 IU/ml) but no diagnosis of rheumatoid arthritis despite chronic inflammatory joint pain.
My new primary care physician suspects that vasculitis may underlie the joint pain, chronic weird head feelings and what appear to be simple partial seizures upon the transition from wakefulness to sleep. Vasculitis may also explain the chronic platelet hyperaggregability (platelet clumping) that underlies my 30+ years of vestibular dysfunction (rotational vertigo, low pitched tinnitus, and chronic disequilibrium). Plavix and aspirin do a great job of keeping the vestibular symptoms away but don’t do anything for the weird head stuff and chronic pain.
All that plus EDS hypermobility type.
MTD
Hi MTD.
Welcome and thanks for sharing 🙂
This is great information. Sounds like we have a lot of the same symptoms. Let me know if you get diagnosed with anything else such as vasculitis. I will do the same. I am seeing a neurologist about the twitching at the beginning of April and I will post if I get diagnosed with anything.
MJ
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