Has anyone been diagnosed with Anca vasculitis GN with DAH

@molly48823 my diagnosis is also ANCA positive microscopic polyangiitis vasculitis. I was hospitalized following a case of COVID with my lungs hemorrhaging and multiple organ failures including my kidneys. My medical team has been great, and I have seen a nutritionist, I have a Cardio-pulmonary specialist, Rheumatologist, Nephrologist and a Heart & Vascular specialist. The hard thing is that they can't give me any definite answers because they say there is still a lot unknown about the disease and that is seems to manifest differently in patients. I have blood work done every 4 months before my infusion and then again after the infusion to ensure the ANCA is being managed. Unfortunately, I've also developed diabetes and fibromyalgia during this journey. It has only been a year since being diagnosed via kidney biopsy. I'm sure I will learn to manage the pain and fatigue so that I can live a mostly normal life. Right now my family & I just trying to understand what it all means for us. Thanks for the facebook link, I will check it out.

@bagill003 you have a good sized family! That’s wonderful.

I think I have had fibromyalgia almost forever. Really. Perhaps 50 years. I have always been very sensitive to touch. When I was hugged by anyone it was painful. I didn’t know why, so I tossed it off until about 15-20 years ago. Then I started reading about fibromyalgia. It was an aha moment. I talked to my doc and he confirmed that I had it.
Vasculitis started the end of 2015. In March 2015 I was sick with the flu and bronchitis. By November I had a swollen, painful lump on my leg. The dermatologist did a biopsy and diagnosed me with Polyarteritis Nodosa.

Now I am being tested and treated for another rare autoimmune disease. Chronic Inflammatory Demyelinating Polyneuropathy is giving me many problems and will continue to do so…it’s a form of neuropathy that is a “cousin” to MS. I am now using a cane and walker for safety…

@SusanEllen66 I'm so sorry you are having to go through yet another debilitating disorder. I wish you better days than not!

@bagill003 Has anyone suggested “spoon theory” to help you understand and explain to others your issues with fatigue? https://www.webmd.com/multiple-sclerosis/features/spoon-theory

If you Google “spoon theory” you’ll find there are numerous articles to help us understand and cope with the fatigue.

Hope you’re having an okay if not good day!

@molly48823 thank you so much for the link. It is absolutely brilliant!! It totally addresses the entire challenge of fatigue. I sent the link to my husband and my mother.

I am having a pretty good day today....thanks! I hope you are too!

Sorry I did not realize we have the same or similar diagnosis! On Facebook, look for Microscopic Polyangiitis (MPA) Community. It’s a very active, supportive group.