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Transitioning into SPMS

Hi everybody

Guess I just wanted to rant here. I feel very misused by my MS doctors.. I was diagnosed with RRMS in 1998, the only symptom I had was L-Hermittes Sign. Doctors didn't feel I was sick enough to warrant treatment. Fast forward to the early 2000s (sorry I can't remember exact dates) when I had more advanced symptoms of vertigo and vomiting. Again no treatment prescribed. Now of course I have more debilitating symptoms, double vision, drop foot and cognitive issues and they say I have transitioned into SPMS and there aren't any meds approved for it. So I guess now I just wait for the MS to progress. Doctor says I'm good for 5 years and after that I'll probably be in a wheelchair. WHAT!!! When did I transition and why couldn't they do something about it then. I'm angry but of course that doesn't help. I have never been prescribed ANY MS drugs! And here I am flailing about in a sea of MS symptoms. If I had to do it over I would, of course, be more involved in my treatment but who knew? I thought they were doing their best by me, NOT...Anybody else have this sort of thing happen to them?

  1. This is crazy. I am not one to encourage lawsuits, but you may really have one here. You definitely should have been on meds from day one. In the meantime see about getting on Ocrelizumab immediately. It is showing good benefits for progressive MS, especially in early days of the progressive course. I am so sorry this has happened. Keep a positive thought and proceed from here.

    1. I am so sorry you are in this situation, Marilyn2016! At the very least, you may want to consider finding a new physician, if at all possible. It sounds like your needs are not being met by your current physician. Early and aggressive treatment can be a crucial part of keeping MS progression at bay or slowing the progression as much as possible. You might check out the National Multiple Sclerosis Society website to see if you can find a new physician in your area -- You know your body better than anyone else. Don't let anyone tell you what's best for you. If you had a car that you were told would be non-drivable in five years, would you just run it until it died? No. Most responsible car owners would find ways to minimize the damage and see if we could make repairs that would help the car run better for longer. Your body should be treated the same. Whether you end up in a wheelchair or not in five years, that is no reason to not seek out treatment options that could help. Please consider seeking a second opinion. Best, Erin, Team Member.

      1. Thank you both for your thoughtful responses. I have had 4 neuros since I began this journey and that's part of the problem. I'm in a HMO. First I wasn't sick enough for meds and then it was too late. My neuro is so conservative, he said Ocrelizumab not indicated here. He also said can do nothing for double vision. (have appt. with eye doc tomorrow so we'll see). Also have severe RLS for which he prescribed neupro patch which is worthless to me. I will be getting a second opinion. Again, I am grateful for your thoughts. Verifies what I was already thinking.

        1. I hope your eye appointment was productive, Marilyn2016. And do keep us posted, should you feel comfortable doing so, on how getting that second opinion goes. Best, Erin, Team Member.

      2. I'm shocked. Eye doctor said my double vision wasn't from MS. I have a trust issue since I don't believe much of what doctors tell me. If this isn't MS he couldn't give me another reason for it. Who knows. Haven't got the second opinion from the MS doctor yet. They're not responding to my emails. Will keep you posted. Thanks for responding.

        1. Hi Marilyn2016 -
          Please do keep us updated! Hoping that you hear from your neurologist soon!

          Meagan, Team Member

        2. Good grief, Marilyn2016! I am sorry you are having such a hard time getting answers! How utterly frustrating! And yes, please keep us posted! Best, Erin, Team Member.

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