Ok, so now that every person in my life believes I am just crazy I am finally reaching out here. Any information or suggestions are greatly appreciated.
I am a 37 yr old female fyi.
My story started Last yr, so I will give the shortest version with the most information. Aug of 2017 my son was in the hospital having surgery. I got very sick, I stayed sick well into Feb of 2018. Cough, mucus drainage, night sweats, loss of weight and over all just ill.Multiple rounds of antibiotics, flu tests ect. No blood work at this time. Nothing helped I had several times had fevers of 106 per my thermometer but believe 104 is more accurate. My mom would rush over and help me get the fever down, meds, showers ect. Docs had no information at this time. Finally I started feeling better.
I developed what I thought was a cyst in my upper eyelid of my left eye. If I wore my contacts it became several inflamed. So I stopped.
Moving forward May 2014 I am still getting "sick" very easy but feel it is just my body us run down. I noticed one day I was very dizzy and had a sever migraine. I drank water and relaxed ( at this time this was probably my 5th migraine in my life). That night I noticed I had a slur to my words, my daughter points out my left side of my mouth is drooping. I think ok this is related to my migraine. The next morning I have left sided weakness. At this point I am scared I go to the er and am told Bells palsey.
Moving forward. I have several more episodes of this but they were accompanied by extremely low BP and migranes that continue. Left sided weakness is unexplained. End result after MRI and neurologist apt is I have migraines with a swollen lymph node in the back of my neck on left side. I was informed I have several lesions in my brain that are "brain moles" I know have what appears to be permanent left sided facial paralyses of the lower part of my face that includes the left side of my tongue.
At this point I am having blurred and double vision that is worse at time. I contribute this to migraines. What I believe to be a sty is still there (eye doctor confirms it is not a sty but a growth or lump now and I have had a substantial change in my vision)
The day before nero apt I had a very sharp pain in my right breast, I feel the area and discover a lump the size of a pea.
So off to first mammogram, mammo shows nothing as breast tissue is to dense so im given a ultra sound area is concerning f/u in 6 months. I go to the Moffat cancer center for a second opinion. By now I have several areas in my breast my armpits and groin area that are hard lumps. Moffat says its enlarged lymph nodes and f/u in 4 yrs.
I am at a point I know something's not right. I have had bone pain almost all my life, joint pain since I was a child. My teeth are rotting and I just feel defeated. So I find a great new primary who takes time and listens. Tons of new tests are ran, including new ultrasound of breast.
I show I am a carrier for EBV and salmonella. and ultrasound shows calcified lymph nodes. Bone density shows I have sever osteoporosis and osteoarthritis. I am now having difficulty with breathing at times. and my primary is concerned of the left scapula pain iv had for years that causes numbness and tingling down my arm. We decide to I should see a plastic surgeon and see if he would biopsy the lymph nodes.
Plastic surgeon agrees to biopsied the left arm pit lymph node. well it came back today it was not a lymph node at all it was Breast tissue with PASH and ADH.
He refereed me back to my primary. Now I wait. Again. I know I am freaking out but what else can I do to advocate for my self. I know I need to do something I just wish I had a doctor who knew what to do with me and the waiting and the tests are killing me.
Oh fyi I also had genetic testing done through Tellmegen I am still waiting on those results.
Thank you for reading all of this and thank you in advance for any information you may have.