Mom might have ALS

[jpsugar123]

I can't believe I just wrote those words. Some of you may remember me from earlier. My mom was diagnosed with spinal stenosis in July 2007. She had surgery and was running around Disney World 5 days later feeling like she had a new lease on life. Late August 2007 she had surgery to remove her left ovary. She woke up from the surgery sick as a dog and running a low-grade fever for over 2 months. From September to November she went from holding someone's arm, to having to use a cane, to a walker, to a wheelchair. We took her to a hospital mid-November. They said she had something with nerve conduction block. They tried IVIG for 1 week then the docs gave up and put her on steroids which helped tremendously. She had muscle twitches and lots of pain, but as soon as they stuck the IV of steroids in her, she felt great and the twitching went away and hasn't been back since. While she wasn't able to walk, she could kick up her legs in her wheelchair and use a transfer board to go to the bathroom. This was all by Christmas. Then, it seemed overnight, she went downhill AGAIN and couldn't use a transfer board because her arms were too weak. She went into the hospital a 3rd time (new team of neurologists) and they ran all the same tests again. Her EMG's are abnormal and they aren't picking up a signal from her badly damaged nerves (she had a biopsy mid-January that confirmed this). This doc told her in January that her inflammation was gone and that the nerves were only badly damaged. We went to a new hospital last Friday (May 9th) and they are horrible. Mom had a chest x-ray Friday night and it took tilll NOON Sunday to see that she's got an infection and that's why she was having trouble breathing. Well, Sunday night it goes into wicked pneumonia and she's on a BiPAP machine. The neuros tell us it is suspected ALS and that's why she can't breathe. I'm thinking, "you idiots, she's got freaking PNEUMONIA! No one can breathe normally with bad pneumonia!" Needless to say, Mom's off the breathing machine and doesn't feel like a small child is sitting on her lungs anymore. The docs are still running tests too. The neuro from back in January will not release her antibodies blood workup. The current neuros are working on that as am I. I read on a trusted website that anti-GM1 antibodies are not typically present in ALS, is that right? Docs are also looking at MMN because she is only showing LMN signs and NO UMN signs. She can breathe OK, she's got no reflexes hardly and that Babinski thing is OK too, no toes fanning. She can also swallow great and curl her tongue. This is just such a freaking nightmare. I go back and forth with this whole ALS thing and pray to GOD that she doesn't ever show UMN signs. Mom's only 55 and still has a lot of living to do. I don't care if she can't ever walk again, I just want her alive.

Thank you for letting me vent!
Jessica

 

[CindyM]

Vent any time, Jessica. I've been doing a bit of that myself lately. I hope for all of you that your Mom's illness is something else! Cindy

 

[brooksea]

Jessica,

Just read your post! So sorry for the pain and anguish you all must be going through. I hope y'all can get to the bottom of what may be wrong with her and that it is not ALS.

Good Luck, and feel free to vent anytime.

 

[mjk201]

it's okay to vent. your mom is blessed to have such a great daughter like you. these days kids just wanna put there parents in a home when they get sick. well godbless you and your family and i hope you guys get thru this okay.

 

[fiddleplayer51]

Jessica,
That's such a slap in the face to have the spinal stenosis surgery and feel so much better and then just a month later have the ovary removed and feel like hell! And on top of it losing the ability to walk and having the progression of symptoms she's had. I really feel for you all and hope ALS is ruled out.
Take care,
Jane