Question: I am a 47 year old Caucasian female. I have the following diagnoses: interstitial cystitis, porphyria (possibly peudo-porphyria), essential tremors, peripheral neuropathy, lumbar spondylosis, migraines, and ulcerative proctitis, nonspecific. I believe all of these things are related to one another somehow - like there is a major health problem causing all of these symptoms, but the doctors just tell me "I'm just unlucky". Recent tests found no specific cause for peripheral neuropathy, which appears to be getting worse. ACE blood results were very elevated, but CT lung scan showed no signs of sarcoidosis. I am very frustrated that no one can find the cause of my medical issues. I am tired of feeling tired and sick every day. Any suggestions?

Thank you for your reply.

No, I am not diabetic. I was tested recently and fell within the low prediabetic range, but all results were normal before that. (Probably hit that range due to weight gain as a side effect to many of the meds I'm taking). I was also diagnosed with peripheral neuropathy a few years ago. It's just getting worse over time. I also do not drink alcohol (not since the various diagnoses started) nor do I use recreational / illegal drugs.

I was tested for B12 and B9 deficiencies on 08/02/2017 and both tests came up normal. All my recent blood work, and there have been over 20 different tests, have come up normal except for the ACE levels and liver tests. My Aspartate Aminotransferase (AST) blood test came back at 136 U/L (standard range at my lab is <=30 U/L) and my ALT from a liver panel came back at 93 U/L (standard range at my lab is <=54 U/L). I was told these results were probably due to my fatty liver since severe liver damage would have results in the thousands. My Alkaline Phophatase from the liver panel was normal and my Bilirubin, total, from the liver panel was also normal.

Recent MRI tests of my back showed arthritis in the back as well as some slight narrowing. Physical medicine did refer me for acupuncture treatment, but I have not followed up on that as I do not know what criteria to use to pick a practitioner. Any suggestions? I currently use TENS unit during the day for my back pain and heating pad at night. I have Norco for pain relief. I used to be on morphin, but it became too difficult to do my work at my job while taking morphin. Norco does not have the same sleepiness or "drugged" feeling that morphin had on me, but it also doesn't always work for pain relief.

Thyroid Stimulating Hormone (TSH) blood test also came back normal. Other blood tests that came back normal include: Gamma Interferon, Thyroperoxidase Antibody, Antinuclear Antibody (has been positive in the past - possible false positive?), Vitamin D, HIV, creatinine, Vitamin B6, Sjogren Syndrome A Antibody (SS-A) and Sjogren Syndrome B Antibody (SS-B), Serum Rheumatoid Factor, Borrelia Burgdorferi Antibody, blood lead, and the test for Cryoglobulin and Cryofibrinogen. My neurologist also ran a 24 hour urine test for mercury, arsenic, and cadmium and all three were within normal ranges.

The doctors just can't seem to find out why I am having all of these health issues and it's frustrating me. I just want to find out what is causing all of these issues so that the primary medical issue can be treated so the other issues, especially the peripheral neuropathy, won't continue to progress. It scares me that the top of my right thigh is numb all the time and that my hands will go numb when I drive, read / hold a book (Kindle actually), and type. Sometimes they will just go numb hanging down by my sides.

I also would like the fragile skin from the porphyria to get better so my skin will stop bleeding (often without me noticing) at the slightest brush against something and then scarring once the bleeding area heals. I also hate the red marks (looks kind of like small purpura) that appear on my arms so easily. Worst of all, I hate the constant pain and being tired all the time. I will sometimes sleep for over 24 hours without waking up (my family calls it my marathon sleep sessions). I just want to find someone who can solve all of this and I don't know where to go or what to do.

I do not drink alcohol and have not since about 2008 when the diagnoses started. I will continue to use the TENS unit and I will look into acupuncture.

Thank you.