I have a host of dx’s:
Chiari (decompressed) & Degenerative Disc Disease in full spine > Pseudomeningocele > Hydrocephalus > Sub-galeo Shunt (many revisions due to peritoneum tearing) > Syringomyelia > Brain Slump > Peripheral Neuropathy > Symptoms of Craniocervical Instability
hEDS - Familial history of brain aneurysms (mother died at age 37 & maternal grandmother has survived 6+ aneurysms); personal history of miscarriages, placenta previa, and organ tearing (see above); 9/9 on the Beighton Scale. COL3A1 tested normal, so dx was hEDS with confirmed vascular crossover symptoms.
I suspect that I have MCAS, an autoimmune condition, and possibly a second HDCT (if that’s even possible).
I’ve had edema in my hands/feet and just above my wrists for many years now. Recently, I developed severe edema in my upper arms. Started with a feeling like a rubberband around each upper arm. I suspected lymphedema originally (I do tend to get swollen lymph nodes a lot), but now I suspect it might be Chronic Inflammatory Polyneuropathy (as that’s the only explanation I can find for both arms). Lymphatic massages feel great, but little relief. Exercise is not relieving symptoms; sometimes seems to exasperate symptoms. I do have incontinence issues, a sacral dimple, and severe lumbar pain. Also, both legs/feet are pins/needles/numb from just below the knee down for past year. I’m confused on Chronic Inflammatory Polyneuropathy (as a neuropathy) vs. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP; autoimmune). I have all the symptoms, but Drs don’t seem to want to listen to me.
For a year or so, I’ve noticed that the muscles in my thighs feel like they’re ribbed (no longer smooth), and since the edema in my upper arms, I noticed that my arms feel the same way (breast tissue as well). And I’ve noticed these pea sized bumps in different areas (sometimes they feel like raised veins with the pea sized lump at one end) mixed in with ribbed fat tissue. The lumps are very painful and when I massage them, they sometimes cause massive bruises, even though I’m not massaging that hard.
Blood tests have shown elevated WBC (Neutrophils auto count; Hgb & Hematocrit moderately elevated); High CRP & ESR. All other tests are within normal ranges (including glucose). PCP said that blood tests show no sign of RA, Lupus or Sjorgrens - and therefore, he will not refer me to a Rheumatologist.
Any ideas? Any/all help would be greatly appreciated.