Last reply 2 weeks ago
Tired of This

I’m just over it. Im going to the Mayo clinic in a month to get more answers about MS and my personal diagnosis. But I’m not expecting a miracle. I’m not holding my breath that I’ll feel better. I just wish I had some pill or exercise or something that will make me feel normal again.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


itsmewithms
2 weeks ago

I was down to Mayo in Rochester MN USA for 4 days in early Sept. Not sure if all appointments are similar or if yours is over a series of days or just one appointment and what Mayo you are going to…there are so many Mayo facilities now.

The way mine went- The first day started at 7:45. I have a friend that lives about a half hour away so I stayed overnight with her (my house is about 2 hours away). My first session was for over an hour talking about when my MS started, how it was diagnosed, how it has acted through the years, how many times I had relapses and how were they treated, did they go away, what treatment I was on and when etc and etc. Then the conversation turned to what I could do when, when was the last time I could remember walking as far as I wanted without concern about MS impacts. How much of my life has been impacted and basically over time is it impacting it more and more with and without relapses. This conversation really made me realize that I have moved from RRMS to SPMS. My treatment needed to change as my Neuro had recommended. They agreed that I should switch to Ocrevus.

I was a little surprised that they said that I should go ahead and wait until my MS was proving it was still active by having a new relapse and then starting Ocrevus. My Neuro said to switch to it NOW. I agree with that and since he was supporting that I have gone ahead and started a few weeks ago.

I have completed the first set of first rounds of Ocrevus with no issues. I did have a worsening of symptoms on the front end of starting Ocrevus with no activity in my MRI…then I started having some blurry vision in my left eye, ON, so another MRI and this time there is some activity so he ordered a 3 day round of IV steroids, 1 g per day. I don’t blame this on Ocrevus and really don’t think what I am experiencing is very bad by my Neuro is always very sensitive to anything impacting vision.

I was also a little surprised when I asked them if they had any recommendations on an “MRI diet” as they said, no, not really. Of course they are Drs so don’t recommend cheeseburgers and encourage a “healthy” diet. They, of course, recommend exercise as can be tolerated and set up a session in another day with a PT guy for an assessment and recommendations.

The BIG surprise for me was that although I assumed they would be able to see the records I told my Neuro house to let them I found out when I got there that Mayo wasn’t able to download or look at any of them…or at least they hadn’t! The first conversation like “well, if you really have MS…” as you can imagine I was pretty upset with that as a starting point! but they still had the intro discussion with me but in my mind I was pretty pissed. So them the next day I spent a lot of energy trying to get the records redownloaded and checking and rechecking if they could see them now. They never could. I spent much of the next day driving back up to the cities and picking up the CDs from my Drs office that thankfully loaded them all onto a disk. I drove them all back down to Mayo by 5 so they could have them loaded onto their system so they could see them at our appointment the next morning.

The wrap up meeting the next day went very well now that they could see my MRIs and had accepted the point that I really do have MS!

They weren’t able to get m into an MS Neuro (which I feel I need and am really looking for answers from) so that appointment is actually happening on Nov 26, so that took 2 1/2 more months to get on the calendar.

Let me know if you have any questions. I say, prepare by writing down everything they may ask you and bring all your Dr records with you. Good luck!


lisa_morghan
2 weeks ago

Hi dear im sorry to hear your upset and probably scared my name is Lisa if your willing ill share some shit Fuk news then ill bring it back to yes yes yes !!! My oldest sister 2 years older than me im 62 she 64 she got the diq.of Ms when she was early 20s now back then the doctors didnt know anything about MS it was a skeleton in the closet ¿¿¿ seriously she
Got ripped think the age in her 20s so if medication was not available !!! Nope so leslie my sister went
Into denial !!! Total denial
Now shes still with us alive but
Bedridden
2 nurses day am night
Pm im telling you this because
They NOW have medication for this ugly ugly diease at least dont be so hard on yourself the medication can stop any more Progressive of you very possible not be getting worse!!! Try it be greatful your in a time we’re its getting better slow down do your research google is our friend !!!

4

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.