Medications
Hello everyone! I was diagnosed a month ago at the Mayo Clinic in Jacksonville, Florida. I am 50. Left my husband a few months before I found out I had MS. lol. If this is God’s way of playing a joke on me, it isn’t very funny! I was all set to start a new chapter in my life and set out a a single woman after being in a toxic marriage for 25 years. Well, it’s definitely a new chapter. Just not the ending I was expecting AT ALL! I wanted to travel and see the world! I even got a passport! What in the Hell is going on? 🤷🏼♀️ This wasn’t what I wanted to hear, but it is what it is and I’m just glad to finally have a diagnosis after a year of being bounced around from one doc to the next. Anyway, I got 5 days of steroid infusions, which relieved me of just about all of my symptoms, however, I had a trip planned and was gone for 2 1/2 weeks. They assured me that the referral for the MS meds would be in the works and ready when I returned home. Someone dropped the ball big time. I’ve been home for 3 weeks and haven’t received the meds and I couldn’t get in to see the MS doc until November 20th! I am pissed, to say the least!! In the meantime, my symptoms are coming back with a vengeance. The steroids have worn off and I am absolutely miserable with the spasticity in my legs and neuropathy in my feet and gradually moving up my legs again. Seems like the muscle spasms are worse this time. I have a terrible brain fog too. While at the Mayo Clinic the MRI’s showed a new lesion forming on my brain and the active one in my spinal cord causing the problems with my legs and feet. I just don’t understand why there is such a shortage of doctors that treat MS? While I wait, the disease is doing more and more damage. I feel like no one cares and I don’t have anyone to talk to about how I feel and what I’m going through. I am pissed off at the world right now. I’m usually a very happy and outgoing person, but now I’m miserable and feel so alone. Anyway, I am planning on taking ocrevus. Has anyone else here taken it and if so, how did you fare?keeping my fingers crossed for that awesome drug to do it’s magic! Look forward to the chats!
Ive had it for 25yrs, talk about being pissed! This wasnt in my plan. I take Techfadera but im going fron relapsing into secondary progressive, did you get tested for a virus that effects what kind of meds you can take, the medicine they want me to start could make the now dorment virus come alive and it goes to the brain resulting in death or veggitative state, i have no body to talk with it seems like they just dont wanna listen to it so i feel all alone. You can talk with me I don't mind. Im Sue.
Hi Sue! Yes, I actually tested positive for the JC virus. However, I believe Octevus doesn’t have THAT many cases of getting the brain infection as the tysabri (sp?). I’m sorry to hear about your MS becoming progressive. I am hoping to hold off this disease long enough to at least, get some traveling in. I’m new to the whole MS thing, but learning everyday and I’ve seen people who have given me hope. I’m always available for a chat. Where are you located?