Activity by iggeez @iggeez1416
Hi Lola, I am so sorry it took me so long to answer your post. I have been in and out of the hospital many times over the past 3 months and I am getting ready for surgery. I know it is so completely frustrating when you want your body to move and it doesn't want to. A member of my family has Fibromyalgia and it is a very debilitating disease. I hope the therapy helps you. My family member has to be on steroids and that is no fun. Please email me if you want to and let me know how things are going for you. I hope you can find some therapies that work for you and help your motor function. I am dealing with not driving anymore and it is very difficult to do. My life as I knew it ceased and I had to rearrange everything. It is difficult. Good Luck to you and keep me posted.
Hi Doris, I am so sorry to hear of your troubled medical issues. It sounds like you are on a giant merry go round and can't get proper help. I have contacted one of the many excellent staff members at Mayo Clinic and they are going to get in touch with you for some suggestions. I hope this will help. Take Care and message me to let me know you are alright.
Hi Lauren, I am so sorry she is going through so much and can definitely empathize with her. I will tell you that when I took my blood panels for the entire previous year to Mayo Clinic, the Rhuemetologist there saw things in them that no other Rhuemetologist or specialist was able to interpret. He suspected what it was and then confirmed it with further blood testing on me. He stated that it was a very difficult thing to diagnose if you are not used to seeing it. The Mayo Clinic Team has so much more expertise and exposure to unusual conditions and in my case multiple conditions made my case even more complex. Even after I was diagnosed by Mayo Clinic, two of my doctors in my local medical community did not want to take on such complex issues and I had to find other specialists that were willing to continue treatments and help me with my contiuing care. I cannot stress strongly enough that your sisiter and family do everything you can to get her into Mayo Clinic and see if they can help her. I was truly on my last hope of ever unlocking the mystery of my medical symptoms. Once I finally did take that leap of faith with Mayo Clinic, I cannot explain the true relief and sense of empowerment I felt. Please telll her for me that I am thinking of her and let me know if you are able to get her an appointment. I truly hope she can find some relief. If you check one of the comments I made to a post on my story, there is some information there that might give her some relief with her skin issues. Take Care and thanks for sharing with me.
Hi Mark, I am so sorry to hear about your Mother's passing. It is always difficult to lose a loved one and to see them battle with a disease most of their life. Thankfully researchers now have new medications that don't have such harsh consequences that will hopefully help me to live a long and quality life also. I was on prednisone for 3 years for my skin issues before they knew what was wrong with me and it is a very harsh drug. It seems stress is frequently used as a diagnosis when a disease is evasive and difficult to diagnose. Thank you for your kind and uplifting words.
Hi Jan, Thank you so much for sharing your story. I wanted to reply and let you know as I suspect you already do that you are definitely not alone in your pursuit of your medical truths. Your story is very similar to mine and I did say to myself, I hope I am not dead before they figure it out. I encourage you to continue to seek answers as I did until you find them. Please do whatever you can to get a referral to Mayo Clinic and see if they can help you. In the meantime, I had a couple of ideas that I use that might give you some immediate relief for your skin problems. I want to preface this comment post by stating that I am not a medical professional and I have absolutely no medical training whatsoever. I am an armchair researcher who has spent hundreds of hours and trial and error on my conditions. I am going to condense this as much as possible. When I began to have serious skin issues, I had a 3 day patch test. It revealed I was allergic to a host of things including preservatives, plastics, latex, rubber, etc. Of course, once I was diagnosed, I understood that allergies are my immune system breaking down. I became a voracious label reader and my own food advocate. A very large amount of preservatives include an ingredient made up of benzoates. There are benzoates in almost everything including but not limited to soaps, fragrances, shampoos, toothpaste, household cleansers, tons of food products, prescription and over the counter medications. Even a lot of new clothing is preserved initially with formaldehyde. Now I always wash my new clothing in my allergan free detergent before I wear it. When I went to the grocery, I began to read labels of foods I was preparing and eating. They were filled with artificial flavoring, preservatives, dyes, fillers, etc. I began to eat organic foods and prepare more natural foods and I never buy anything with those things in them and I don't eat most pre-processed foods. I also eat a lot of gluten free foods.I choose my soaps toiletries very carefully. When I eat out, I stay away from saucy foods and red meat which usually has dyes. I carefully research any new medications I am asked to take by my physicians. I use Mayo Clinic website a lot for my research. It is a great source of trusted information. So, I went from bloody infected rashiness all over my body primarily my extremeties, to one small 5 inch in diameter slightly dry red patch on my right leg. Maybe this information can at least help you with your skin problems. A week after I wrote my initial story and posted it, I went into the hospital for six days with diverticulitIs (An unfortunate part of my illnesses). While, in the emergency room waiting to be admitted, I worked with the Doctor to ensure I had the right IV antibiotics so I didn't have problems. The initial antibiotic that is frequently used for this problem, Flagyl, immediately gave me a rash and I began to bleed. We finally found one that I could tolerate. The same with the meds I was sent home with. I asked the nurse what she was giving me everytime she wanted to put something in my IV or in my mouth. It seems like a lot of work but it was very well worth the effort and it became very easy to do once I got used to it. It has truly helped me to have clearer skin. Good Luck to you and please keep me posted. I would love to hear from you.
I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms – seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.
After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital. After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response. [...]
After three long years of unexplained symptoms and unresolved blood serology, my nuerologist suggested Mayo Clinic. It all began with a fender bender on my way home from work one sunny day. I was in stop and go traffic and could see my house from the stop light. Next thing I was aware of was paramedics pulling me out of my car and rushing me to the hospital. I had passed out. Upon follow up visits to numerous specialists, I was initially diagnosed with nuerocardiogenic syncope. I continued to have syncopal episodes and develop other symptoms with severe skin rashes, seizures and debilitating migraines. So much so that I had to retire from my job and stop driving. I went to specialists after specialists and even a very well respected highly regarded hospital. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline and my quality of life all but disappear. My blood panels continued to have flags and I was continually told I was showing false positives. What? I thought. Over and over again? It didn't make sense to me. I went to the only specialist that really believed I had a problem but couldn't figure out what was going on. I sat in front of him and cried like a baby begging him to tell me what to do next. He suggested Mayo Clinic. After consulting with my family and the referral from my nuerologist, I made my first journey from Georgia armed with a years worth of blood panel results, MRIs and MRAs, psych analysis (they kept telling me it was all in my head). The minute I walked through the door, I felt a sense of peace and confidence. It is difficult to describe but I will try. From my very first day, I experienced the organization and empathy of staff members. When I saw the Doctors, they were on time and engaged. They truly listened paid attention, asked questions and did everything they needed to do without rushing me out the door wondering what just happened. When I went to the next appointment an hour later, the doctor already had the bloodwork I had done that morning and had spoken to the doctor I had just seen. It was amazing. In two days, I had a diagnosis and course of treatment including my next set of appointments for other possible diagnosis. When you get diagnosed with multiple diseases or conditions like I was which is myasthenia gravis and lupus, it isn't a good feeling,but it is a relief that now I can begin treatments and educate myself on diet and live as healthy a life as I possibly can. I am forever grateful to Mayo Clinic and they truly are a team. While it isn't an easy life, I can now make it a quality life. Before Mayo Clinic I was having difficulty just getting out of bed and now, I get out of bed do chores, go out to eat, and do things I used to take for granted. The Mayo Clinic Team is the best there is.