stilljennifer
Member
- Joined
- Jul 29, 2010
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 07/2010
- Country
- US
- State
- Alabama
- City
- Northport
This can be moved any time but I did want to say thank you to the people who have emailed me. I couldn't figure out my login so I couldn't respond. I CANNOT thank you enough for checking on me and I'm glad to say I am still here
I don't know how to start this. I guess I'll start with the good news. None of us think I have ALS. The bad news is that PLS is back on the table. They tried to make it a demyelinating disease, were even going to start shots for MS this month but the lesions I have do not explain the reflexes, gait, etc. so we are on our way back to the NMD department at either Mayo or UAB - waiting for the call from my neurologist.
I definitely have autonomic dysfunction. In April my heart rate was swinging from 35 to 180s and they were talking about a pacemaker but a change in beta blockers helped that tremendously.
My symptoms now are: weak, stiff and spastic left leg (my neuro said Monday that it is definitely progressing and that he could see a difference in several things with me, reflexes are even more hyper as well), cognitive issues (according to one doctor recently I could qualify for disability), trouble speaking at times (stumbling over words, replacing one word with another, etc.) still the fasciculations (though it is SO strange how you grow to live with it), and lovely, lovely drool from time to time. I have a little incontinence but not a lot. I am starting to fall and trip a lot again. I turn to go in a different direction and my feet want to stay where they are and that always makes for a graceful move People ask me how I can laugh but how can I not? Maybe there will come a day but in the meantime, it sure beats crying (which is what I'm trying not to do now).
Interestingly, my doctor told me that PLS DOES have exacerbations like MS, and the same things bring it on- heat, stress, exhaustion.
My neurologist has turned into the nicest person in the world and spends forever with me, even asks me for feedback and INPUT now. Imagine that. I almost fired him once (and told him nicely) and then I walked out on him another time (when given the diagnosis of PLS).
I haven't shared with many people (two actually) and it's so hard to believe. I don't know that I do yet (believe) and this has been going on how long? My life has been affected in every way, particularly because of the cognitive stuff.
So now that I got that out of the way, I am just going to say that I am going to FIGHT this thing. How? With my attitude! I'm going to work out when I can, enjoy life as much as possible..... Something I have actually been doing for a year now.
I don't know how to start this. I guess I'll start with the good news. None of us think I have ALS. The bad news is that PLS is back on the table. They tried to make it a demyelinating disease, were even going to start shots for MS this month but the lesions I have do not explain the reflexes, gait, etc. so we are on our way back to the NMD department at either Mayo or UAB - waiting for the call from my neurologist.
I definitely have autonomic dysfunction. In April my heart rate was swinging from 35 to 180s and they were talking about a pacemaker but a change in beta blockers helped that tremendously.
My symptoms now are: weak, stiff and spastic left leg (my neuro said Monday that it is definitely progressing and that he could see a difference in several things with me, reflexes are even more hyper as well), cognitive issues (according to one doctor recently I could qualify for disability), trouble speaking at times (stumbling over words, replacing one word with another, etc.) still the fasciculations (though it is SO strange how you grow to live with it), and lovely, lovely drool from time to time. I have a little incontinence but not a lot. I am starting to fall and trip a lot again. I turn to go in a different direction and my feet want to stay where they are and that always makes for a graceful move People ask me how I can laugh but how can I not? Maybe there will come a day but in the meantime, it sure beats crying (which is what I'm trying not to do now).
Interestingly, my doctor told me that PLS DOES have exacerbations like MS, and the same things bring it on- heat, stress, exhaustion.
My neurologist has turned into the nicest person in the world and spends forever with me, even asks me for feedback and INPUT now. Imagine that. I almost fired him once (and told him nicely) and then I walked out on him another time (when given the diagnosis of PLS).
I haven't shared with many people (two actually) and it's so hard to believe. I don't know that I do yet (believe) and this has been going on how long? My life has been affected in every way, particularly because of the cognitive stuff.
So now that I got that out of the way, I am just going to say that I am going to FIGHT this thing. How? With my attitude! I'm going to work out when I can, enjoy life as much as possible..... Something I have actually been doing for a year now.