A member would like to share her story. I would like to encourage others to share how they came about being diagnosed. 🔍🏨🚩🐜🔍🏨🐜🚩🔍🏨🚩🐜🏨🔍🚩🐜 Stories of diagnosis? I started having flu like symptoms, then chronic sinus infections in Sept/oct. I went on many rounds of antibiotics and it took a long time for me to get better. I kept getting sick! Then they said I had allergies after I tested negative on an allergy test. Then I was diagnosed with sinusitis. I continually kept going to the dr for upper respiratory crap. Then I began having pulsating tinnitus in my right ear (a whooshing sound like a fan or the ocean) it would stop if I turned my head to the side the right way but it was and IS so annoying! That symptom is still with me. I started getting bad migraine headaches every day. Since I had a history of migraines I blamed it on stress, as did my doctors. I went to my ENT about my ear and she did a CT scan of my head. I have sinusitis. Already knew that. She did an MRI of my brain and neck and I came back ok. Minus some bulging disks in my neck. So it wasnt blood vessel issues for the whooshing sound. She told me to see a neurologist. Of course the neuro couldnt schedule me til October. (This was now July of this year). I began having blurry vision. It was so bad in my left eye I was scared. My ENT told me the neuro appt was too far away and to see an eye doc. So I saw an eye doc. He dilated my eyes on August 28 2014 and told me I had swollen optic nerves (papileddema). He said this was caused by a disease called pseudotumor cerebri aka idiopathic intracranial hypertension. This is high spinal fluid pressure on the brain from an unknown cause. He said I needed an emergency spinal tap to relieve pressure or I would go blind. Then left the room. I was distraught and terrified, had the spinal tap in the ER (big mistake). I had an opening pressure of 36. Normal is 10-16ish. I had a spinal fluid leak and low pressure headache afterwards. I met a woman whos son had IIH as well. She said her son was just dx with Lyme and that was what caused his IH. I asked neuro after neuro (I went to 6 til I found an ophthalmologist that was amazing) to test me for Lyme and other potential causes/underlying issues. This ophthalmologist said idiopathic means too lazy to find a cause, and that there was a reason my body was doing this. The fatigue, chronic pain, memory issues, brain fog, joint pain, blurry vision etc. The other docs said since I was an overweight female my IIH was most likely caused by being overweight and they wouldnt do any bloodwork!!! Found out that IIH is just as unknown in the medical world as rocket science, and they give you pills or surgery an send you away. This new doc finally did bloodwork. Found I have MTHFR, I have blood clotting issues, and am CDC positive for Lyme. So any of these other idiot doctors could of tested me :( I now have a picc in being treated for Lyme and have to closely watch the IIH as antibiotics can flare it up. I have also been on Diamox for the IIH which is a horrible drug alone. Sorry this is long, just thought we could all learn from other experiences! And Im not saying lyme is always the case but I looked back at old bloodwork and I kept showing elevated white blood cells and other levels were off. These were all ignored by the doctors treating me. Please if you dont trust your doc find a new one. I went through a lot before finding mine.
Posted on: Sat, 20 Dec 2014 20:29:16 +0000
Trending Topics
Recently Viewed Topics
© 2015