Got my passport to leave Limbo this week...

[Denise Marie]

Hi, I'm new to this site. I actually found it on a site I belong to for people who live alone with a disability. Love the phrase Limbo Landers- I've been calling it diagnostic limbo (hell). I spent a year in it and finally received the formal diagnosis this week. It is so affirming to read some of the posts here, from the maddening frustration to seeing there are others here who didn't want to take some of the meds offered in the interim so as not to mask or complicate the diagnosis. (I figured if anyone heard that bit of logic they'd think I was definitely crazy!)

I'm a single parent of a 25-year-old daughter who has multiple special needs. It's been daunting, but we're stronger for it. As much as I was waiting for this diagnosis to enable me to begin the DMT, there's a lot of mixed emotions. They are starting me on Avonex-not worried about injections, just side effects in that it is critical that I continue to function. My symptoms are increasing numbness/tingling feet to knees, now up thighs, hands and face worsening, fatigue, dizziness, intestinal issues. Had my first Solumedrol IV treatment last week as symptoms seemed to be marching along for over a week.

I'm finding online support has been a lifesaver for me.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

Denise: Welcome to MS World! Sorry for the reason though! It is good you are finally diagnosed so that you can get started on some meds. I am glad you are on some IVSM to get your exacerbation to calm down, you will feel so much better once you get all of the doses. BTW, you may feel a little worse once the solumedrol is in you, it takes a couple of weeks sometimes to take full effect so hang in there.

As far as Avonex goes, it is an older DMT, and you should do well on it. It does have flu-like symptoms. It has one of the lower efficacies, so if you are having exacerbations on it you may want to suggest changing to one of the pills like Tecfidera. It is a step up from Avonex in efficacy from 30% to 50% in preventing new lesions and preventing new exacerbations.

Best of luck! Let us know how you are doing, OK?

Take care
Lisa

[chefaid90]

Glad to hear that you have made it out of Limboland. Happy when I hear people finally get out of LIMBOHELL

[Denise Marie]

Thank you

Thank you for the support and information.

So much of this process involves patience-often while enduring some pretty awful symptoms. I've learned it is mandatory to pace my online research- or I'll drive myself crazy. But how can we not be hungry for information?

My health plan is pretty darn frugal. I honestly think that is partially why the dx was delayed - $$$. I learn of these newer DMT's just when I'm finally able to get the older ones...I tell myself to be grateful and, again, patient. It's just too bad it's our bodies/health that is at stake....