Hi, I am new here and I Dont often reach out for any advice or even speculations but I thought I would give this a try because 14 years is a long time to hear "We Dont know what is causing this, let's watch and wait and maybe try this."
I am 32 years old and mother of 6 amazing kids. I have been struggling through some very odd symptoms that Dr's can't seem to explain. I will try to keep it as short as possible.
For as long as I can remember I suffered from ringing in my ears and daily headaches. After my 1st daughter was born I began having mini-strokes occasionally. The mini-strokes have continued over the years and hit at random times. Then 10 years ago I began to feel more tired and weak, I thought it was just due to having 4 small children and figured out how to deal with it. I suffered a massive seizure in 2008 and since the headaches have intensified. I do not know the cause for the seizure since the hospital was convinced I was using illegal drugs and didn't do a scan or anything other than trying to draw blood for a drug test. After the seizure my daily headache intensified as well as the fatigue and weakness. And a new symptom of whole body pain like I had just overexerted my muscles over and over again. For the next 9 years I have difficulty doing evenvthe most simple task due to difficulty thinking and getting my body to due what I want it to either from pain or my brain just failing to send the correct signals. In September 2017 my last daughter was born and after several trips to the emergency room being sent away with a wrong diagnosis they finally took my head/neck pain and chest pain seriously and did the proper scans with contrast they found that I was suffering from pericarditis, enlarged heart, fluid on my heart and lungs and while diagnosing my chest pain they did additional scans and found that I have aneurysms due to dissection of the artery in both my left and right vertebral arteries.
They got the pericarditis under control but did not know what to do about the aneurysms since we do not have a Neurologist locally. The advice of a university Neurologist in another state was to prescribe aspirin 81mg 2x daily and redo the scan in 3 months.
Since September the pain, fatigue and weakness is debilitating. My hands are now turning purple when they are below chest level and tingle all the time and my veins are very visible in my fingers and palms like my skin is translucent, the chest pain and shortness of breath is horrible, in confused and tripping over my words more often than not and the pain in the back of my neck and head is like my muscles are being torn away. When I go to the Er due to the pain I am told and treated for anxiety and my regular doctor put me on prednisone which made everything worse rather than better.
Sorry for the super long explanation which is the short version believe it or not. I guess I am just hoping that I am not the only person in this world that has so many symptoms but no explanation as to what is causing them. It has been a very frustrating journey and I cannot afford to give up searching with 6 little ones who need their mum.