dx 2/27/07 [Archive] - ALS Support Group

ALSforums is an open support community for individuals affected MND and ALS. We encourage you to join our support group to ask questions and to share your experiences with ALS and MND. We offer tips about ALS, help, care, support and friendship - join today.

View Full Version »› dx 2/27/07

tabney

03-04-2007, 10:26 PM

I have been dx with PLS. The good news is I do not have ALS. At least my neurologist is 85 percent sure it is not ALS. An EMG in three months will give a final dx. I have been looking for a support group all over and never noticed it right under my nose.

I don't know what to say right now. I have limitations to deal with daily. So weak in the legs that standing up is difficult. Once I am on my feet, I have to be careful to walk slowly. My legs cramp alot. Baclofen is not helping yet but I have not been taking it for long. My hands are weak and don't want to do what I need. They are stiff and have
some atrophy. I have no clue what to do now. I have a dx but not much information on
what comes next. Any ideas?:?

CindyM

03-05-2007, 10:47 AM

Hi Tabney. Sorry to hear you've been given a DX. You landed in the right spot on the internet, though. I see quite a few posts about PLS. Try a search on the subject and see if that doesn't hook you up with others who also have this DX. Meanwhile, glad you found us and welcome! Cindy

03-05-2007, 01:31 PM

Hi Tabney. Welcome to the forum. I take Baclofen and 300 mg of Quinine and that combination stops the cramping. If you are in the US there is a kerfluffle going on now on whether Quinine contributes to heart disease so you'd have to weigh the risks and talk to your Doc.
AL.

CindyM

03-05-2007, 09:00 PM

Al: kerfluffle? That's a new one on me. I kind of like it! Cindy

03-06-2007, 12:14 AM

Cindy. Maybe my age is showing or maybe it's just a Canadian expression. It's similar to much ado about nothing or tempest in a teapot or just a big deal about nothing.
AL.

CindyM

03-06-2007, 07:12 AM

I figured it was a regional expression...like we say something is "Wicked Good" or my son-in-law says "I bought new shoeses and a new pair of pantses." The one that drives his wife nuts is "Come here once, will you please." To which she always responds, " Why ask me to come once? Did you think I would come come to you and then go away in order to come back again?"

Our expression for kerfluffle is Don't make a high mass out of a 'Hail Mary.' But I like yours better. :)

Have a good day with your new wheels. I am off to the clinic for another EMG, so I'm kind of on pins and needles this morning, if you catch my drift. ;-)