Going downhill fast from PPMS

Hi @Christina1958,

Thank you for sharing something so difficult. I’m really sorry to hear that you’re experiencing such a fast decline, it must be incredibly difficult and overwhelming. Primary progressive MS can bring a lot of anxiety, especially when it feels like your body is changing faster than your doctors can respond.

Unfortunately, with PPMS, progression doesn’t always follow clear stages like in other conditions. It often comes down to noticeable changes in mobility, daily functioning, or new symptoms that don’t improve over time. But you shouldn't have to wait for things to get “bad enough” to be taken seriously. If you haven’t already, it may help to keep a symptom diary and bring it to your next appointment. Documenting even the smallest changes might make it easier to push for proper care.

To others living with PPMS:

🗨️ Have you experienced a sudden or rapid decline?

💬 When did you decide to talk to your doctor about progression, and what helped you through?

@csgamble @shellmo4 @monkeymaggie @Fluffy @Steve62 @Tommotoo @Georgie @casper34 @Rolley @Hoofah1 @greecetogo @fran42 @bethen @Bitch270 @Pyjamaqueen @sueseedy @ragerty @pavo123 @bambi13 @1eyedjack @jaynedebra @Zlg2070 @Ladyisis71 @Gemzied @Lynn49 @kathy52 @SuSaBa @Loobysedg74 @giggi61 @tmpk28152 @DonnaBR @Charliecat @Nikkim @carless1 @Kencomax @melissawall @Karanja2012 @adreeves @MargaretP @FredaBurke @Mazb1982 @Yvette53 @Claire65 @AliSyn @blackshades @bigk @Ozzie5120 @Sandy1958 @Gay140 @Pricey @Mandymca @Sallyvalentine @Jules13 @CarmenRajput @Alvina @Shelah @Jeanweeks @Thissyanne @KayWlk @Daisybuster @Tracey1971 @Juliemoore11 @Monicaspencer13 @Zoey51 @BadgerCowell @Mollie07 @Chalmm @Lisahodgkins @Sk8rGirl @Doitforkyle @2212dianne0 @Salsybar46 @Charlie219 @Sonialb @LindaBlacker @FitzyDebs @vonnywonkie @Jemgavlaa @Oliviac09 @Iamsue @Michelle166 @Bernieleonard @Lorraineredmond @StevieC @Batchelm @Elbie1 @Mattyh75 @Deedeenone @Jax1980 @Yvonne3101 @Faye1512 @EmmaMilo @Gohare @Trainor84 @Rose1962 @murraygrant @volvof88 @ColinSalter @alexab @revdonahue

You’re not alone in this. Your experience deserves to be heard, and I hope you’ll keep reaching out.

Take care,

Somya from the Carenity team 🌼