Hi, I'm new here, but not to MS.
My mom was diagnosed when I was 8 years old, and I'm 25 now. She's had relapsing remitting for years, she could walk, but tired easily and required a cane.
She tried Avonex for a while, and it didn't do too much, so she went on Copaxone, and it did wonders, she got much stronger. She still had MS symptoms when the weather got very hot, or if she got stressed out, but for the most part she was doing well.
But the bumps and lumps of Copaxone got tiring for her, and she asked her doctor if she could stop. He actually let her.
That was two years ago, and it's been a slow downward spiral since. The MS symptoms got worse and worse, and her neuro did nothing. I was shocked he didn't put her right back on it, as soon as the smallest symptoms started flaring. The past year in particular, her condition worsened.
But then, three weeks ago her legs and hands gave out completely. She can't take care of herself, and at this point my dad and I aren't prepared for that kind of care. The hospital pumped her full of prednisone, which didn't do much but give her 'roid rage.
She transferred to a rehab hospital which claimed to have an MS Clinic with specialists that would help her walk again through physical therapy.
She's been there for two weeks, with no progress. Now they're talking about moving her to a nursing home.
Nursing home?! She's only 57, and was walking on her own only 4 short weeks ago. This is all happening way too fast for my whole family.
It seems like doctors are either avoiding her or giving up on her, and I'm not sure where to turn now. I can care for her at home, but would need to do some remodeling to the house first, so the nursing home would hopefully only be temporary. It just scares me immensely that her condition might not be temporary. I repeat, this is just happening way too fast.
I'm frustrated her neuro let her go off the Copaxone in the first place. I'm confused as to why the doctors only seem to suggest Physical Therapy or Prednisone, what about other MS drugs? I know MS reacts oddly to other diseases, so I'm scared there's something else going on that's triggering the MS that the doctors are just failing to see.
It's scary to see my Mom going through this, she's there mentally 100%, but her body's just giving up. But it seems the doctors are doing the same. Actually, her Neuro hasn't come in to see her once at the other hospitals, he's just left her with the hospital people.
I'm not sure what I'm looking for by posting this here. But I'm not sure where to turn now.