Hello all! I'm in the process of being evaluated for autoimmune/collagen tissue disorder issues and I'm looking for any guidance or words of wisdom from those who may have experienced a long and trying journey to diagnosis.
I'm seeing a rheumatologist that specializes in scleroderma, and I'm awaiting some blood work that may point us in that direction. They are also testing for lupus and checking my liver and kidney values.
My medical history in a nutshell: I've spent the last 10 years bouncing around to different specialists. I have symptoms and diagnosis that run the gamut of bodily systems, but the big ones for me are:
- Autonomic Dysfunction (neurocardiogenic syncope, inappropriate sinus tachycardia, postural orthostatic tachycardia syndrome, low/high BP, low/high HR,
- Neurological issues (migraine aura without headache; vision and hearing loss)
- Cardiac issues (mitral valve prolapse)
- Gastrointestinal issues (esophageal dysmotility, hiatal hernia, chronic inflammation of esophagus, stomach, and intestines)
- Musculoskeletal issues (joint pain that wakes me up, stiff/frozen/painful joints - esp. hands, muscle scarring)
- Skin issues (rashes, hives, cystic acne, easy bruising, red splotches, reaction to heat)
I feel super lucky that I'm still able to function relatively normally, but not knowing what is causing all of this has been incredibly frustrating. Now that scleroderma is on the table as a potential lead, my normal mechanisms for coping are failing me. It's a pretty scary thing to think about, and I'm trying to prepare myself for the long and frustrating reality that I may not ever have a final diagnosis.
For those of you who endured a long journey to diagnosis, how did you handle the waiting and find the patience to accept the possiblity that you may not get an answer? How did you prepare yourself for the possibility of hearing that scleroderma was responsible for your medical issues?
I'll continue to read more on the forums, thank you all for sharing your journey!