Hello Everyone,
I have been too tired to do much of anything so I havent been on for a while, i hope every is doing well. I have been tapering off of prednisone and my fatigue, severe muscle fatigue, imbalance, pain, thinking, etc. are all getting worse again. In addition, my depression and anxiety is increasing, too. My therapist thinks it is not due to the prednisone, but because I am having more symptoms again, and still dont know what is going on.
I finally have an appointment with Mayo Clinic, it is not until April 9th. I am worried that I will waste all this time and money and they won't find anything (because this is how it has been going the last several years with doctors in town). It is so hard because of feeling invalidation from doctors. In 2010 I did psych testing, the results were hypochondriac or alternative diagnosis being hyper aware due to fibromyalgia (a few weeks later I found Out my ferritin iron was low, which was making my restless legs worse which leads to poor sleep and fibromyalgia was worse)....... what do you think got put on the charts????
Fast forward to this past year, I have not been able to work since last April, and my primary gave me a diagnosis of MS after an brain MRI, that had changes from previous, but then I saw neurology and he said I didn't have MS or anything nuerological. Then I saw rheumatology and she said it is just a bad case of fibro. I dont have anyone to follow up for fibro, and I am on no medication treatment for fibro.
This fall my balance and fatigue progressively got worse, to a point that I was put on antidepressant, then hospitalized for severe depresssion and anxiety. (I am now off the antidepressant as that caused very poor sleep and lead to the worsening of depression). Then I lost the support of my primary as she diagnosed me with somatization disorder and said to stop wasting my money by getting poked, although there were others professionals in outpatient mental health and my therapist and pulmonologist that says that diagnosis is not correct you need to go to Mayo Clinic. Then I started taking prednisone for an asthma flair late december and that helped with my balance, fatigue and pain and swollen hands... now my primary is back to believing it is something more then fibromyalgia and depression and anxiety.
But I am still worried Mayo Clinic wont find anything, and then what? I know I should go, most of the time I know that there is something more going on, especially since I am so like my mother (she was diagnosed with MS, but now we think she was misdiagnosed). But sometimes I think, they won't find anything or say like others have "be glad nothing is seriously wrong with you"....... and more comments like that. or it is all in your head..... it is so hard to overcome the things some doctors have said....and believe in myself....... I want someone to believe in me......and help me find a way to get better......