Last reply 3 months ago

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!

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3 months ago

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.

3 months ago

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?

3 months ago

I’m sorry you’re having a difficult time.
I know that the waiting to start treatment is the worst part.

I was diagnosed in July and I was worried about the waiting but I started Tysabri in September so it wasn’t too bad.

After treatment was initially agreed, my neurologist just needed to sign the form of consent before I could officially start it, but even that probably would’ve taken a few months. However, I starting getting new symptoms so my MS nurse arranged for me to see my neurologist at relapse clinic, and he signed the form of consent while I was there. We managed to speed it up that way, and seeing as you are having more symptoms, I wonder if you would be able to do the same? Sometimes there is a way around things.

I’ve heard a lot of good things about Ocrevus. Not so long ago, I was chatting to a lady with PPMS, and she said that Ocrevus has totally stopped her progression.
And in terms of the JC Virus, it might be that you are still at a low risk anyway, despite being positive. And I know of people on Tysabri who went from being JC positive to JC negative. They’ll assess the risks for you, and keep a closer eye if they need to.

In the meantime, thankfully there are new drugs and treatments being discovered all the time. There will probably be even better options for us in a few years time. 🙂

3 months ago

I’ve been on Ocrevus for a little over a year now. I like it so far. It definitely helped settle a lot of my symptoms and so far both of my MRIs since starting have come back stable with no new or active lesions. I was using a walker before I started and haven’t needed it since two months after starting which I’m grateful for. I know it does take a bit of time to get started and for insurance approval. I believe I had to wait a month to two months from the time they submitted the paperwork. Hopefully you start soon. I hope you feel better! Let me know if you have any questions. Good luck.

3 months ago

Yes. MS wasn’t in any of our plans…yet, here we are. It sounds like you shed a partner that wouldn’t have been supportive and was causing you stress so that is a good thing. #1 and 2 causes of progression can be sleep and stress and we know that they go together 😉

It is important that you find a Neuro that is reactive and there when you need them as well as a Dr (preferably a functional or integrative Dr with some Neuro training). They are in short supply in the midwest as well but I see many neurologists listed in the Jacksonville area.

I went to Mayo in Rochester MN for a second opinion on my MS in early September and they were great but I knew that I didn’t want to work with them for regular care. They are 2 hours from me and I didn’t expect them to be responsive due to the type of facility they are.

I started Ocrevus last week after switching off from rebif and copaxone previous to that. I was Dx in 2005. If you use the little magnifying glass in the upper left you can search on a lot of topics and past conversations. Welcome to the group and hope you get some answers. You can also friend people and have private conversations using the little bell icon in the upper left…there is so much you can do here I haven’t found it all ;-0

3 months ago

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