Posted , 9 users are following.
My mother is currently suffering from an undiagnosed condition. I would like to tell you about her symptoms and journey over the last few years, with the hope that perhaps someone could offer some helpful advice. Perhaps someone has had a similar experience and would be able to offer suggestions about a diagnosis to look into, some holistic treatments to try, medicinal advice, or perhaps things to stay away from. I will try my best to offer a comprehensive picture, while also only giving the necessary pieces because there is just so much… Furthermore, I will do my best to piece it together in the most sensible fashion. My mom is 53 years old, is an average height and weight, and works in a public elementary school as an aide.
A few years ago, my mother began experiencing exuberant reactions to mosquito bites. She would become so inflamed from a bite that several times it led to hospitalization for cellulitis.. A small bite on her foot would easily turn into her entire leg swelling to unbelievable extremes. As of recently, she takes prednisone as soon as being bit which helps to keep the reaction from worsening. Luckily we live in NY, and mosquitoes are only a problem during the summer… however the other months bring their own challenges…
For several years, she gets sick with sinus infections in the winter months. She is unable to rid herself of the sinus infections, and will typically need several rounds in a row of antibiotics, often without ever being completely symptom-free. It is common for her to go several months combatting against the same infection. These eventually turn into pneumonia. (On another occasion she was also hospitalized for C.Diff from being on antibiotics so long. She was in the hospital for 2 weeks because of unexplained fevers.) She has chronic sinusitis, and every sinus cavity is filled and should be drained. An ENT proposed surgery, however the other doctors that deal with the autoimmune and hematological type issues have all advised against her having such a procedure at this time.
She has problems with random bouts of inflammation and rashes. She will randomly break out in rashes all over her body. Furthermore, she is currently in physical therapy for severe back pain (from disc/sciatic nerve). She is so inflamed that she can barely sit, which means she can’t even drive herself to her appointment even though it is only 10 minutes away. The doctor can’t believe she is so inflamed while she is on prednisone (she has been on it this time for about 1 month).
She has a history of G.I. issues. She has suffered with acid reflux in the past. She is also not regular and will also have such severe stomach pains that she winds up in hysterics and crying from the pain.
For a few years, she has also had concerning and varying blood cell levels. Besides needing iron infusions at one point, her white cell count will often be very low. They have found that the B and T cells must ultimately be fighting each other. Her IGE levels were extraordinarily high (over 45000), which they thought were associated with the mosquito bite reactions. Because of this unique and unusual reaction, she was referred to a research oriented sub-specialist at Mt. Sinai in NYC. She ruled out hyperIGE syndrome as well as a rare mosquito sensitivity. She then got my mother an appointment at the National Institute for Health (NIH). They have performed every possible test and have begun to uncover that a common root causes all of these symptoms, however they can’t quite conceptualize it or diagnose it. Something systemic is going on, and they have ruled out lymphoma, leukemia, and rheumatoid arthritis. They seem to be leaning toward autoimmune, but again, they say she is too unique and doesn’t fit any diagnosis. NIH has performed every possible imaging test and has found that this issue has impacted some of her organs: her liver, lymph nodes, and spleen are enlarged; she has nodules on her lungs. Most recently she began exhibiting vasculitis; she was diagnosed after the doctor saw what looked like blood spots spreading up her legs. (By the way- there was no formal test for this. Is that unusual?) She has been taking pred. for this for about 1 month, and we think it’s working. But we are concerned about her constantly having to go on pred. for one reason or another.
The doctors have gotten to the point where they have prescribed her Imuron (an immune-suppressant drug). NIH was considering chemo at one point, but the last time she was there, her blood levels had improved somewhat so they decided not to go that route at that time. We think they improved at that time because she was following a very strict holistic diet and supplement regimen. Now with the development of vasculitis however, one of the doctors at Mt. Sinai feels that this is advancing to a more serious level and she must take action. Before she resolves herself to taking this medication, she wants to know that she exhausted every other possible alternative. She does see holistic doctors (and has also seen chinese medicine doctor, acupuncturist, etc.). She has certainly been open to it all. The imuran scares us because she already has not been able to fight off infection. Plus, even though we know that the inflammatory issues and changes in her organs could cause cancer, we are worried about the Imuran increasing her risk of cancer.
This is a very trying period. We have a sense of urgency to get help, answers, a cure, etc. However, we can’t deny that she has been looked at by the best in business, and are feeling scared about a possible race against the clock type situation. We also feel discouraged that there aren’t less severe routes being suggested.
Thank you all for taking the time to listen/read.
1 like, 13 replies