A few people have asked what HCST is and what it entails. OK, don’t hold me to this because I am not a medical professional but I can give the overview that I was given the best I can. I attached the more scientific info below. I will go to Chicago in Feb and I … More What is HCST exactly?
This morning we headed to Chicago for the pre-testing phase.I followed orders and wore my mask the entire flight which was probably a good move because the guy next to me was coughing without even covering his mouth. I should have given him a mask! I will get bloodwork done, an EKG, echocardiogram, pulmonary functioning … More Pre-Testing
I currently am in arguably the riskiest part of this process. In order to get the procedure done I must agree to washout of the current medication for 6 months leaving me vulnerable to relapse. My doctors at UCSF were heavily concerned about this and lobbied Northwestern to allow for me to take a dose … More Washout period HCST
In September after received another MRI showing at least one new lesion, I decided to apply. I knew my chances were low but thought it couldn’t hurt. I gathered my medical records and test results and forwarded them all to Northwestern. About a week later I was told Dr. Burt thinks I may be a … More HCST will I qualify?
Sometimes at night, I torture myself by doing research on Multiple Sclerosis. I think I like to know all of the bad things just to prepare myself. Then I can always say it could be worse. Anyway, I was doing that when I stumbled on an article on a Canadian study conducted by Dr. Freedman … More HCST, could this be for me?
I started Tysabri Feb of 2016, it took 4/5 months being untreated to get to this place and it was entirely because insurance was being bullish and i would go as far to say unethical. The really sad fact here is that many people don’t have the resources or knowledge to fight these large companies … More Started Tysabri
So this is a gross understatement. Insurance companies would rather have you die a slow painful death then treat you for a chronic illness. Aetna is the absolute worst and have made my diagnoses 10 times harder than it ever needed to be. It is a business, and they treat you as such. If you … More Insurance is Nightmare
I was given a few options for treatment but the most efficacious drug was called Tysabri. It is a once a month infusion. It has done amazing things for those with MS even restoring mobility in certain individuals who had lost it. I opted for this drug. I was warned though. There is a blackbox … More Treatment
My name is Jennie and I was diagnosed with MS the summer of 2015. Starting in 2013 I began noticing some things that didn’t seem right, in 2013 for about a month I noticed some shaking of my hands, I mentioned it to my doctor. He did some bloodwork to check my thyroid and all … More Diagnosis 2015
Jennie's MS Journey 