Wednesday, August 20, 2008

Rounding up the MS Posse

I am having such a hard time lately. I am so upset, not having answers and not knowing how to fix what is broken. I keep thinking that the issues I have are all my fault, that if I would have stopped over-thinking things and worrying that I wouldn't have ever gone through what I am going through. Do you think it's possible that a person can worry themselves to a "probable MS" diagnosis?
In June, Brianna is told she has a "mild case of MS", followed by news of "probable MS". On August 14, Brianna started her very first course of 3-day IVSM and is waiting for answers.

Read "Broken" to catch up on what's going on with Brianna now.
Lisa, what can I do? How can I speed up a diagnosis? Who can I talk to? I feel like even though I have been going through this for 4 months, I haven't made any progress. I think my doctors are just waiting for me to show some other MS sign so they can just give me the diagnosis. Is there nothing else they can do? I just want to know when I will get feeling "back in the saddle."
I know many of you have been exactly where Brianna is now. Probable MS. Frustrated and Scared. Juiced on steroids. Just wanting things back the way they were..... before.

So I ask you to join me in letting Brianna know that SHE IS NOT ALONE.


  1. Thanks, Lisa. :-)

  2. Hey Brianna,

    I had my first real relapse in May when I was 29 also. I say 'real' because tingly feet/arms isn't enough for doctors to care but blindness is I guess.

    This time around, I found two really good doctors that knew exactly what to do. First, an eye doc that knew the signs and second, the optic neuro the eye doc sent me to.

    So for me the key was good doctors. Who are your doctors? Are they part of a MS clinic? Do they have experience with MS? Did you get an MRI? Do you have the radiologists report and images (sometimes you get more info from those than the doc)?

    The diagnostic criteria for MS has changed in the recent years. In order to qualify as being MS, you must have more than one attack. If you don't have an others on record, they will keep you as probable until the next attack. My doctor thought it was better to start on DMDs instead of waiting for the next. You might look into the diagnostic criteria yourself and see what fits you.

    I found the National MS Society's website most helpful when I first started. It gives a easy to understand picture of diagnosis, treatment and everything inbetween.

    As for IVSM, they suck. No doubt about it. I had withdrawals from the steroids about two days later. I was falling over, sleeping 12+ hours a day and waiting to beat someone up. I now know that I need to taper off with oral medication. You might discuss that with your doc also.

    Anyway, I am done babbling... good luck and I hope something in this helped. It's 12:37AM here. :)

  3. Brianna, you are not alone. I was just diagnosed in April and I have received nothing but love here in blogland. Hang in there. If your MS is "mild" you will feel better soon. I have been exacerbation-free since April and I'm not on meds. I actually feel like myself again now.

  4. Brianna,

    My neurologist told me there are three tests that can confirm MS. One is the MRI Nina mentioned the other two are a spinal tap and visual eye evoke. Two out of the three came back positive for me.

    It is important to find a neurologist that see patients living with ms because they will understand what you tell them better than a neurologist who do not see patients living with ms.

    MS is frustrating to live with because it is so unpredictable. It exacerbates and affects each of differently, but the same.

    I can honestly say that when MS flares it head sometimes it seems like the end of the world, but it gets better. Continue to hold on to positive thinking as much as you can and remember you have control. You just have to make some adjustments.

  5. Left her an obnoxiously long comment on her blog last night after reading through the whole thing.

    She could be me 11 years ago and your right she is not alone!

  6. Hi Brianna---

    It took me 7 years to get a definite MS diagnosis (I've now had it for over 10 years.) Spinal taps, MRIs, copious blood work (to rule out other stuff.) It takes a while for some to show definite signs: more than 1 lesion on MRIs, a positive spinal tap, more than one attack. Just hang in there and know it will get better. And make sure your neurologist is a good one!



  7. I did lots of IVSM, never tapered, cold turkey, but it was always hard. I left a comment on your blog too. MS sucks. RR things come/go, life will never be the same---it may be better. Your love will grow if it is real and bloom to something extraordinary. MS blogs galore---you are not alone.

  8. It is hard to believe that I am actually remembering what it was like to be in limbo land. When did I cross that fine line between it definitely is MS and um, not so sure it's MS?

    I still do not believe 100 percent I have MS because of all the years of hearing that it may NOT be MS. What do you say when you are in a wheelchair and someone asks you why? "I MIGHT have MS, I don't really know why I am in a wheelchair."??? It was a really difficult 9 years for me.

    Some MS specialists are old school and some are more on the up and up with MS research and early treatment. I was blessed when I finally crossed paths with a very proactive MS dr. who agreed to start treatment asap. It only took 9 years.

    I know it is so frustrating and it can be such a long path. Your feelings are totally appropriate considering the circumstances. Be as gentle with yourself right now as you can, you are not to blame, just try to find comfort in all the MSers who have been exactly where you are. I remember what it felt like and how frustrating it was...just hang in there...

  9. Your story is so similar to many others and just as frustrating. I too was possible and then probable for 4 years prior to my dx. Lots of lesions but LP's were negative for O-bands. Everyone presents differently, and it took that long to exclude other diagnosis's that in my opinion would have been much worse. Having a dx of MS was a relief after what I had been tested for.
    Hang in there. You aren't alone.