Serious case seeks specialist
Hello,
I have a question regarding a difficult medical condition. I am looking for a specialist who is very knowledgeable in the fields of rheumatology, oncology, cardiology, neurology, and immunology and who is also passionate about their work - someone who is interested in taking on a challenging case.
I have very unusual antibodies and changes in blood components and organs. Unfortunately, the text below will be displayed without paragraphs, which makes reading difficult. If you are interested, I can also provide you with a clear overview.
The most noticeable changes (in addition to two previous tumor diseases) are:
cardiac fibrosis,
restrictive cardiomyopathy,
diastolic heart failure,
myocardial atrophy,
syringomyelia,
splenomegaly,
coronary thrombosis,
posterior wall ischemia,
proliferation of tissue in the thymus with a very high density of up to 120 HU,
muscle pain and muscle failure,
multiple sclerosis,
oligoclonal bands in cerebrospinal fluid and blood (type 3),
complement deficiency of C3 and C4,
antibodies against: ANA, sm (smith), dsDNA, Zic4 (zinc finger protein 4), SMA, cardiolipin,
very high calcitriol levels with D3 below the detection limit,
hypogammaglobulinemia,
hypobetaglobulinemia,
lack of IgG1 and IgG3,
large platelets,
increased ACR,
increased CD19 cells,
increased CD4 cells,
decreased CD8 cells,
increased CD4/CD8 ratio,
decreased CD3/CD8 ratio,
numerous lesions in various areas of the brain, suspected to be both inflammatory foci and strokes (vasculitis of small and smallest blood vessels).
I will stop here. I have many more findings, but I believe these are the most important ones. If anyone reading this can help or refer me to someone who can, please contact me. Due to the variety of organ manifestations and antibodies, a conclusive diagnosis has not been made yet. I am very unwell and cannot be treated without a firm diagnosis. Currently, I am only being treated symptomatically for pain (with Fentanyl and Hydromorphone).
If anyone here is reading this and has any thoughts or suggestions, please feel free to share. Or if you know someone who deals with complex cases and enjoys doing so, please bring my case to their attention.
Thank you in advance.
Kind regards,
RWM
