Mayo Clinic Connect
Results for search term "#Rare".
EVENT
Live viewing will be available the morning of August 23rd. When patients need answers for rare, serious and complicated conditions, they turn to Mayo Clinic. Please join us in exploring our transformational work to create the future of health care. Enjoy meeting with friends of Mayo [...]
REPLY
Hello @looking4advice and welcome to Mayo Connect. I am sorry to hear of these difficult symptoms and the lack of answers and/or treatment. Many of us on Connect have had rare and/or hard to diagnose medical problems and we understand the frustration that goes with this. You [...]
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Welcome to your home for all things Mayo Clinic Hematology. At Mayo Clinic, hematologists work in collaboration with teams of experts from virtually every medical and surgical specialty for the care of adults and children with blood diseases, including various cancers of the blood and bone marrow. Follow the [...]
Hi, at Mayo Clinic, they expected to find lymphoma but admit they are sometimes surprised as in my case which turned out to be a rare cancer called Carcinoid, a neuroendocrine disease. [...]
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a research program with the goal of delaying or preventing heart failure for individuals with HLHS. To learn more or to participate, please visit our website or contact HLHS@mayo.edu. Follow the program [...]
DISCUSSION
I first emailed my doctor at the beginning of May about symptoms of illness. I had flu-like symptoms along with flares of joint pain. I have a rare genetic disorder called Familial Mediterranean Fever. However, I have had seemingly unrelated pain flares (atypical of symptoms) along with a worsening chronic
Hi @neet, I would like to add my welcome to Connect along with @lisalucier and other members. I did find a few articles on head injuries and arachnoid cysts but I'm not sure if you've seen them or if they are helpful. PubMed - Sport-related [...]
Hello @vradifegari -- I would like to add my welcome to Connect along with @gingerw and other members. I noticed that you also posted in the Chronic Pain members - Welcome... discussion in the Chronic Pain group. You mentioned you now have polyradiculoneuropathy and [...]
Letrozole mimicked a heart attack for me after 20 days. Zero heart problems before. Went to ER for EKG and followup stress test. No heart damage, just a rare side effect of Letrozole. Heart attack-like symptoms continued for a couple weeks after stopping Letrozole then ceased entirely. No problems since. [...]
Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go through normal daily activities such as work, travel - really no majors changes to my life at this time. I may get a little more tired than normal SOME days however for the most [...]
Hi Hon (Is your name Kim?). Thanks so much for your kind words. Amazing how often we find similarities in our cases. Sometimes distance complicates things terribly, so it´s why having Connect and the hope of getting to be seen by not one, but a team of docs at Mayo, [...]
Does anyone know of this. I think its rare but does exist. My neurologist does not know about this. I have compression between my c5 and c6 cervical disk and have had alot of sun damage to my skin. [...]
I've never seen photos of Allergic Contact Dermatitis rashes that look like what beauty214 has and it seems she has come up with a diagnosis for her type of eczema. Yet she she go to dermnetnz.org as it lists dozens of forms of eczema, even rare ones and study the [...]
Yes, generally speaking Tomoxifin has been mostly used for premenopausal women. I’m 65 and post menopausal. My doctor switched me to tomoxifin from Anastrozole last spring when I broke out in severe hives. She said hives can be a rare allergic reaction to Anastrozole. I don’t like either one... for [...]
@nick0820 Please keep us in the loop of communication! It's great you are not letting this get you down, and We're with you, hoping for a good holiday season with your family. In 2015, when I was diagnosed with an ultra-rare kidney disease, the renal pathologist had [...]
MEMBER
Profile for Ginger, Volunteer Mentor
Hi @lisalucier , I have the pain everyday, but some days it's more intense. I'm on lyrica, tramadol, effector, Clonazepam, vitamin D3 and synthroid. The toughest part is the extreme fatigue when I wake in the middle of the night several times. Tomorrow I have a bone scan [...]
NEWSFEED POST
Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight. JOHN: What brought you to Mayo Clinic Connect? What motivates you to take part in the community? [...]
I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It [...]
Kevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his [...]
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