Still No Answers..Is it Just Me?

Posted by dp5wheels25 @dp5wheels25, Sep 1 8:25am

I was an extremely healthy person until a year ago and then one morning I could not get out of bed, dress myself... anything due to extreme bilateral joint and muscle pain. This came out of the blue and the day before I was fine. For over the past year I have had a number of symptoms including weight loss, extreme fatigue, clicking/popping joints and a number of other classic symptoms that definitely made this seem like an autoimmune condition. After many visits to my local physicians and two travel visits to Mayo clinic (about six hours for me to travel each way) I still have no answers. Over 105 diagnostic tests (blood tests, x-rays, Cat Scans, Pet scans, MRI, Nerve Studies...), you name it and they have done it. To be honest, I didn't feel that my doctors there at Mayo were all that interested...a strange feeling as I was told that Mayo was the place for interdisciplinary care and they would get to the bottom of this. I got a folder when I arrived..."Come with Questions and Leave with Answers" in bold type on the folder. I found if I wasn't bringing up issues (like multiple blood tests that showed low Immunoglobulin IgM results) then it wasn't brought up. I don't mind being the advocate for my care but I really had hoped for more communication and interaction with "my care team". Definitely tired of the stiffness and pain and frankly I am also tired of talking about it all. I have cancelled any further trips to Rochester and will try to see if I can get connected again with a local resource. Has anyone else had this experience. I would love to hear from you just to remind me that I am not alone or some extreme unusual case. Thanks

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meredithes | @meredithes | Sep 6 10:50am

@dp5wheels25 I am so sorry you had such a bad experience with Mayo. I was blessed with FINALLY getting a diagnosis there after my local doctors gave up on me. That's how it felt. I have an autoimmune disorder called primary autoimmune myelofibrosis, which causes severe anemia which in turn causes fatigue, breathlessness, inhibits physical activity (I get extremely winded walking from one end of my house to the other and it's not a big house). Maybe you could have your doctors check for that? I had multiple bone marrow biopsies and countless blood tests. PM me if you want to know who I've seen at Mayo that might help (if you're willing to try again, that is). I really wish you the best of luck and hope you find an answer. What you're dealing with sounds miserable and coping with it without an answer is also tough.

simchaemuna2 | @simchaemuna2 | Sep 6 4:40pm

You are not alone. We (who KNOW your pain) understand! Try to remember that. Keep reaching out. You ARE NOT ALONE ❣️

michgirv | @michgirv | Sep 6 6:53pm

In reply to @colleenyoung "@dp5wheels25, I'm sorry to hear that you feel communication has not been as you hoped with..." + (show)

My husband has a care team at Mayo for an unusual parotid gland cancer. At diagnosis (6 weeks from first symptom to surgery the cancer was stage 4A) and he has had excellent care from the first visit.

I have a long history of autoimmune disorders, beginning at age 9 with rheumatoid arthritis. As an adult I've developed numerous disorders: Sjögren's syndrome, gastroparesis, orthostatic hypotension with no rebound, systemic vasculitis with polyneuropathy with peripheral and autonomic dysfunction, Grave's Disease, Heart Failure, Pulmonary hypertension due a faulty immune response. Can't make this stuff up! I have a rheumatologist, neurologist, cardiologist and nephrologist who don't communicate with each other. Being a retired RN I knew there had to be a better way. After my husband's experience at Mayo I've tried getting in through all of the above specialities after requesting an appointment with Internal Medicine. NONE of the departments have appointment availability.

Basically I need a coordinator of care, communication between specialities, etc. I take mycophenolate, IVIG every 4 weeks, Prednisone, Ranolozine, Midodrine. The neurologist and cardiologist have prescribed different drugs for hypotension and I can't get them to talk or tell me why they think different ways. I've chosen Midodrine for the time being and will see how it goes. I've had the same Neurologist for 26 years and trust him.

I had so hoped for coordination at Mayo as these are serious problems with some serious drugs and possible side effects. My entire life has been lived according to my health, but I'm blessed with a husband who loves me no matter what, 3 children and 4 grandchildren. For all this I'm thankful though my world has contracted so much I don't leave the house much due to symptom management. Anyway, hang in there and continue to fight for care while finding peace in the situation. Hugs...

gkdew2 | @gkdew2 | Sep 8 3:57pm

You are definitely not alone! I have been having symptoms for over a year and finally am diagnosed with an autoimmune disease but the rheumatologist now needs to narrow it down. Cant get in for a few months. Also diagnosed with minor sleep apnea so will start C-pap in a week or so. The fatigue is debilitating but I try to remember that many are worse off than me. Don’t feel alone because there are so many that are undiagnosed. Happy to have this forum to commiserate with