- I have had tons of blood tests, MRIs, CT Scans, SPECT Scans, and Spinal Taps since November of 2013.
- I started going to a Hyperbaric Oxygen Therapy center (HBOT) in February. I would sit in the tank for an hour and it would give me 3-4 hours of clear headed relief afterwards.
- In March, my Dr. at USC finally recommended me to another Dr. for a 2nd opinion at Cedar Sanai. I was ordered more tests, and they were reviewed by his peer Neurologist there.
- They diagnosed me with Cerebral Vasculitis and recommended treatment with Chemo Cytoxan IV therapy.
- I started the chemo in April and ended late May. I had 6 rounds (12 weeks) since it was every other week.
- By the 2nd chemo, I was feeling better a little bit. By the end, and in June and July, I was driving, moved back home from my parents, was organizing the house, and even went on a celebration trip.
- Late July and early August, my symptoms started coming back. I got 3 IV steroid Solumedrol since then. Nothing is helping, and I am getting worse.
- I got a new spinal tap and Spect scan and my vasculitis is not showing up now. So, my Dr doesn't want to do anything aggressive like more chemo treatment. I see the Neuro this coming week to review the results, and my Dr. also gave me a new maintenance med to try - Quinacrine. It is supposed to work good with my current drug Plaquenil - which my body seems to have built a tolerance to.
- My symptoms are getting worse, the fog, confusion, short term memory loss, depersonalization, anxiety, heart palpitations, no sense of time, etc... I am so scared.
- I need this new medication to work. If they won't give me anything stronger and this doesn't work - I will have to search for a new doctor and I really don't want to start over.
I am praying praying praying - God, please help this medication work so I can get my life back.
I am so lucky for my support system or I would not be making it through this.
