Hello, I am a 33 year old female with health issues beginning in November of 2016. I am looking for direction as I am struggling with a diagnosis and support for my health struggles. I live in Ontario Canada.
My issue began with a severe attack of pericarditis. I was given indomethacin the first week, but when my doctor thought it could be gallstones, he wanted testing done that advised me to not take meds and eat for 3 days. The pericarditis became worse, where I was admitted to the hospital for 1 week and given steroids as it was believed the indomethicin wasnt working (although I stopped as advised).
For the next 3 months i was admitted 2 more times for the pericarditis, as every time i went lower on the prednisone I had pain too excruciating to bear. Within the 6 months after initial diagnosis, my back felt like broken glass, I had night sweats and felt awful.
My inflammation markers were through the roof, I had high white blood cells during this time. I had been tested multiple times for all the standard autoimmune diseases, all which came back negative.
I was finally able to go back to work in May of 2017, where I was then at 12mg of steroids (started at 40mg with multiple attempts to get lower)
From there I had a very slow taper, finally coming off them in December of 2018.
I went over a year feeling fine, but to back track to August 2018, I had other issues arise. I was short of breath, extreme fatigue and weakness, had muscle pulling pain come back, TMJ, and numbness and tingling in both arms and legs.
I had respitory test done, endoscopy, thyroid ultrasound, brain MRI, lower back MRI, all coming back okay. In February of 2019 until now, I am struggling with sharp pain of which I thought immediately was a relapse of pericarditis. Upon seeing my cardiologist, my tests do not show pericarditis and inflammatory markers are normal despite my sharp pain and aching shoulders. I am suffering now and have no direction. (No ssteroids, on high dose advil and colchicine)
I have seen a rheumatologist, cardiologist, hematologist, endocrinologist, neurologist all which have shrugged their shoulders as to what is going on.
My next step is to see an infectious disease specialist, as I would like to rule out lyme disease. I was in the forest picking mushrooms one week before all of this began. However docs also shrugged this off. I am also concerned about the inaccuracy of lyme testing in ontario.
It seems to most docs this could be auto immune related, but as mentioned I have tested for these antibodies on 3 occasions already. I am considering coming to the mayo clinic in Florida, but the cost of US health care is worrisome too.
Please let me know if you have any thoughts or direction with my issues. You could save my life. If you need more details on anything I can provide them.
Thank you
Hi @jacii I want to join @johnbishop in welcoming you to Connect! As John suggested I moved . your posts to this existing discussion so that you can connect with others who have gone through something similar. Simply click VIEW & REPLY to get to you post.
@jacii have you undergone lyme testing yet? Why did your doctor's shrug this off?