Vasculitis

My name is Leaffouse. I’m 33 years old, living in New England. I am diagnosed with ASD, ADHD, PTSD, OCD, Vasculitis, POTS, MCAS and hyper-mobility. My previous doctors wouldn’t diagnose me with EDS but it’s highly possible. I’m also going through something neurological that is similar to MS or Early Onset Parkinson’s (symptoms of both so they need to do more in depth testing rather than just an MRI) that I need find a diagnosis for but all my tests come back “within range” and imaging I’m told is normal.

My neurologist, come to find out a PA, told me everything is in my head. It’s clearly not. The only doctor in my corner was my primary and we just moved out of state so I need to start all over! I was to be seen at Wake Forest but now I’m stuck starting over, waiting for referrals and praying I get a good doctor. They even misdiagnosed my vasculitis and told me my images were normal.

#Vasculitis #EhlersDanlosSyndrome #Hypermobility #MultipleSclerosis #ParkinsonsDisease

Hi, my name is odderprod. I'm here because I have Lupus and Vasculitis which has put me in End Stage Kidney failure. I had one failed kidney transplant last year. Hoping to hear other people’s stories.

#MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #ChronicKidneyDisease #Lupus

Hi, my name is Ionna326. I'm here because of systemic problems relating to vasculitis and effects on the heart, mesentery and kidneys.

#MightyTogether #RelapsingPolychondritis #sjogrensvaculitis

I am sure that I have Vasculitis but

I cant find a Dr to diagnose me or else need months waiting list for appt.

I have Lupus and Sjogrens.

I would go anywhere on the East coast.

Thank you

#GranulomatosisWithPolyangiitis

Betrayed....
That's the word that comes into my mind, when I think about having
several chronic illnesses.
Betrayed by my own body. Having to fight just to do the "normal" things in life like
getting up, taking a shower, going to work etc.
Every time you think you've come to terms with the current status life throws
something new your way.
And there you are… Again standing before the next mountain they expect you to
climb.
In my case this mountain is named MPA (Microscopic Polyangiitis)
At the moment it's just a suspicion.
But I'm tired. Tired of getting a new diagnosis every other day. As if EDS, PTBS,
Autism, chronic Migraine blablabla isn't enough.
Tired of them expecting me just to take it. To put on that brave face and keep going
like it doesn't affect me.
Truth is: I am so scared right now.
And I don't know how to go on from here....
#DistractMe #CheckInWithMe #scared #EhlersDanlosSyndrome #Vasculitis

Hi, my name is RubiconRenegade89. I've been diagnosed with Vasculitis and Rheumatoid Arthritis.

#MightyTogether #Anxiety #Depression #RheumatoidArthritis #PTSD

Hi, my name is Sherry (MySharona for this site) I'm here because of a recent diagnosis of Livedoid Vasculitis and I’m hoping to connect with others whh have it.

#MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems