How Does MS Feel

Yes I have MS But...

This Page is for Family and Friends of People with MS.This page was written during a bad relapse and as most of us do, we complain about MS.

I decided to complain in writing. This is not to be taken seriously, it was written in a joking, sarcastic manner.

Deann Walter Hello, My Name is Dee and I have MS. I was diagnosed November 7th, 2000 (Election Day). I was on Tysabri for almost 16 years until my JC titre reached a number my neuro was uncomfortable with. I was in the clinical trial for Avonex + Tysabri and was luckily on the real drug vs placebo.

I've been on Ocrevus now for 2 1/2 years. I've had no relapses or MRI changes since starting it.

I used to be a patient advocate for Biogen doing patient programs about my experience with Tysabri. I met David Lander (Squiggy) at one of the conferences I did. He was a guest speaker as well. He had just started taking Tysabri and asked me if he could pick my brain a little since I was on it so long. He was a little nervous about starting a new medication.

My most annoying symptom is both of my feet are constantly numb which makes walking long distances and standing for long periods very hard. This symptom has been with me since the start. Unfortunately I didn't do very well with my first choice of MS medication which was a weekly injection of Interferon. The first 2 years of my life with MS was spent getting SoluMedrol, a type of steroid, every 3 months. I didn't realize until I broke both of my ankles at the same time that SoluMedrol can cause weakened bones. I was just walking across my living room floor and they snapped.

In 2018 I had rapid onset cataracts which required surgery which is also a side effect of steroids. I never heard of that side effect until it happened. I have to admid I wasn't too upset with that problem because after surgery I was able to get rid of my contacts / glasses and also readers. Once they remove the cataract they put a prescription lense in it's place which has given me great vision.

Another bonus from MS is that I have met many wonderful people who also have MS. I run the Frederick County MS Support Group along with my co-leader Robin Brown sponsered through the Multiple Sclerosis Foundation. I have a great group of members and it's growing larger every month.