Written by Sara Jacobsen
Everyone who visits the Mayo Clinic has a story. Though my story may be a lot like all of the other patients who have come and gone through the Mayo Clinic system, I want to share my gratitude for the organization, facility and clinic that Mayo is.
The year 2013 proved to be a bit of a roller coaster for me. I started out with bowel and bladder difficulty that ultimately spread to affect my neurological system and breathing. I had seen every specialist and had more tests done than I ever knew were possible. In August, I started worsening. I was having difficulty taking a deep breath in, while having increased right sided weakness, fatigue and numbness. The whole array of diagnoses were thrown at me (ALS, MS, Cancer, Myasthenia Gravis, and everything in between). I was placed on oxygen at night and it was becoming difficult to have enough energy to care for my two young boys (ages 3 and 5). I continued to work as a nurse, but I wasn't as effective as I had been.
In October, things continued to worsen. I had to stop running because my right foot was becoming numb, and I had to limit my activity because it was becoming more and more difficult to breathe. By the time I decided to come to the Mayo Clinic (the best place in the world for medicine) in November, it was hard for me to drive home at night because of the numbness in my right foot, it was getting difficult to make it through a day of work, and I had no energy for my kids. The quality of life I had was diminishing quickly.
When we arrived at the Mayo Clinic, I had the awesome privilege of seeing Dr. Karen Mauck. She spent an incredible amount of time with me and ordered more tests. The way the Mayo Clinic moves you through each test and gets you taken care of is more than incredible. They have a system down that is efficient, caring and absolutely amazing. After being there for 7 days, I was able to find a diagnosis of Hashimoto's thyroiditis. The scary diagnoses were eliminated. I had some rare neurological antibodies that were elevated, but there is a specialist for that too! And, they said not to focus on that and recheck it in a year.
I was given a plan. I was given validation and care that was beyond anything I could ever have asked for. I am back home in Colorado. I am working, exercising and enjoying, and playing with my boys. I will be forever grateful to Dr. Mauck and the system that Mayo is. Thanks for all you do and will continue to do. May you all continue to be used and blessed every day. Thank you for letting me share my story!
It's sad you had to go through all that to find out. Stopthethyroidmadness.com helped me ask for the right tests for my daughter so I could find out what it was. I am wondering what mayo's did for you. Asking you not to focus on neurological antibodies and wait a whole year seems questionable. I am wondering if they discussed diet at all? Did they tell you hashis means anitbodies against your thyroid that's made up of protein that is like the protein in gluten and casein?
What treatment did you get. My daughter 31 just diagnosed was given a thyroid medication to take in the am. She is in a lot of pain and nothing works when she has a bad day except perkicept. Not spelled correctly. They won't give her a prescription and she is concerned about losing her job. She is a nurse also and find it difficult to work multiple days in a row. How have you been able to function. She was just started on medication a week or so ago.
Well as of now i still have major flareups. Joint pain. Back rib pain,hand pain,headaches. Total fautige. Very stiff in mornings. I was put on lyrica for a year. Then prednisoneand tramadol for pain and hydroxyzine for hand tremor for a year. As with everything onlys helps short term. Always take estogen as well since i had a full
hysterectomy at 27. So now only taking tramadol for pain and estrogen and paxil. Has been working about 6ms and this cold weather has flared me up again. I am off dairy cause of stomach issues i have developed. Try to stay off of carbs and sugars. I still have Hashimoto and no one will give me any meds until it goes low enough. My t3 and t4 are close but just not bad enough. Now my vit d was way low nd i had a script of that for 6 weeks but i also atarted the paxil as well but was doing ok until last week. I feel heavy and achy all over. My mom has same issues but not diagnosed hashi. I had to get a function test to get diagnosed. I am 46 and all this started when i was early 30s. Oh i also gave blood for the first time. Not a good idea when having autoimmune i was in bed 2 full days so weak. I just wonder if i have lupis. So many things have same symptoms.
I want to thank you so much for sharing your story. It is my exact story. I was told today i have Hashimotos. However ive been battling thyroid stuff for years. Today I wasn't feeling well so I went in to get checked out and I ask the doctor what kind of thyroid problems I had and she said. I had a test done in May and its Hashimoto's. I'm kind of upset. If I don't ask the doctor I would not know. I wish they would have called me to tell me. I also have fibromyalgia sometimes I wonder if this is really whats wrong with me or if there's something else they are missing. I hate feeling icky. Thank you so much for sharing your story with me..
I have been suffering for almost 5 years and at first I had terrible back pain and left leg pain and my left leg is very weak and has numbness and weakness and tingling so the doctor diagnosed me with degenerative disc disease and sciatica and I have had two left knee scopes and I have been going to pain management to get injections in my back and for my sciatica but the pain comes back in a week or two anyways.So I started dieting working out and didnt lose 1 pound in six months and thats when I went to my doctor and told her so she tested my thyroid and said I had hypothyroidism so she put me on a thyroid med and I still was not feeling better after a year of doctors adjusting my meds and about two years ago I started getting these episodes at least thats what I called them so when I first started getting the episodes I have a very rapid heart rate and I get very dizzy to the point where I have to lay down because I know I will faint if I dont so they did a few tests at first and said it was hashimotos so they stopped giving me my thyroid meds and I actually spent 4 months in bed freezing so bad and my whole body felt like it was getting torn apart in every direction and my heart rate was still fast and the episodes became more frequently so they said my heart rate wasnt caused by my thyroid so they sent me to a heart specialist and that specialist wouldnt even do one test he had me go back and forth from my heart doctor to my thyroid doctor and my heart doc sent me to my thyroid doc to say it wasnt my heart and my thyroid doc would send me back to my heart doc to tell him it was my heart so I suffered while those two docs juggled me around for a year and my episodes started out as one or two a day and now its constant so I found a new heart doc and she was so rude and sent me to a elecrtophysiologist and that doc put me on a medication and diagnosed me with innappropiate sinus tachycardia without doing any further tests at all and the meds he put me on made me almost die it is called ivabrine so I call to tell him I was having the worst chest pain and it felt like a car was parked on my chest he told me to keep taking the meds so I did but I couldnt take the pain I stopped that med a few days later so I found a new heart doc and she did a tilt table test and that test was the worst thing ever that I went through and I cant even remember what she diagnosed me with because I was so out of it from that test I couldnt even talk for a long time and I was dizzy all day long that day worse then usual so she put me on a med called midodrine and nothing has changed I still have a high heart rate and I am still dizzy and now I have constant headaches and blurred vision and I have alot of things wrong with my neck and stomach and I had surgery on both of my hands and I have very bad elbow pain I mean the list goes on and on and I feel like there isnt any doctor that cares.Is there ever going to be a normal for me because I cant work and I am on tramadol for my pain and at least 8 other meds for all of my other problems and I applied for SSI and got denied and I have four kids to take care of and I have always been very active and I hope to one day at least feel good enough to take my kids places without feeling so much pain and dizziness and just enjoy life again.I havent been to the mayo clinic but I read your stories and I just wish I could find doctors that actually care.
Edited: 11/09/2015 @ 4:21pm