Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Posts (10)

Nov 7, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

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.

Oct 13, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

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.

Oct 3, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Hi Lauren, I emailed you about this. I hope you received it. Let me know. Thanks

Sep 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

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.

Aug 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Patti, Thank you so much for sharing your story with me and your words of encouragement. This seems to be the case many times with MG. I am glad you also found Mayo Clinic and they could help you as well. They are so great and help so many people. God Bless you also.

Aug 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

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.

Aug 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Steve, What an amazing story. I am so glad you found someone who figured out what the problem was after all that time and you are now feeling better. I hope you continue your road to recovery and feel better everyday. Thanks for sharing with me.

Aug 28, 2014 · Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

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.

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