notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
HI
taking the advice of my friends here--I emailed the doc from the ALS Clinic in Tampa and told her what has been going on.
I emailed her a few weeks ago and heard nothing back, so figured she didn't see any reason for me to go up there.
Two days ago, I emailed her again--turns out, she apparently didn't get the first email. She said I need to go. I replied that it's a very long drive for me and that if she thought it was a waste her time to go--I'd see someone here locally.
She replied back this morning--to come--and to make sure I had my daughter drive me. Now, I just have to convince her (she hates freeway driving more than I do)
I have an appt for May 3rd at 11:40.
Honestly--this should be in the "Do I Have" section--mods can move it if it belongs there.
Several have asked--so figured just a post that I had an appt was easier. I'll be renting a car to get there--my beater just won't make the trip safely.
So--the mystery continues.
Something is wrong. I'm not getting better, only worse. I told her about the pain doc wanting to do shots in my back--she said not to do them, that she didn't think they'd be helpful. So, I doubt he'll refill my rx's tomorrow when I see him--because he makes much more $ on shots. S
I'm guessing since she didn't reply back with "There's nothing I can do for you" that maybe she thinks she can figure me out? We shall see. She's a wonderful person, and I really liked her. She added that if I can't get up there--I needed to go to the hospital here. (Which is NOT happening)
If she can't figure it out--I think I'll just learn to live with it. She knows her stuff. I should have contacted her months ago.
I still think that other than my arms--whatever is going on is UMN based--since she found Babinski and clonus in my legs with spasticity. (Is that why she said no to shots in my back? Anyone know?)
In the vein of all the other self-diagnosers on the DO I HAVE section--I think it's PLS. This has just been going on too long to be benign.
I do think that if it WAS ALS, I'd have much more gone by now than just one arm. Having to bite my nails off because I couldn't clip them was my final straw. I need answers.
I need to NOT fall. My knees look like something you'd see on a 10 year old. My daughter is afraid to let me out of her site because if I fall, I simply can't get up alone. Not it's hard. Not it's painful. I just don't have the arm strength to get back up. Period. But that's not new--I've been falling for about 5 years now. it's why I was given the cane, then a walker, years ago.
Remember--she's the one that told me not to use the c-pap and should be on bi-pap instead. The Pulmonologist agreed when I showed him her email. (thanks Allen for the settings--which were spot on) and to ALS Guardian Angels for sending me one. My FCV was in the 70's--not low enough for my insurance to pay for one. The one they donated is old and makes horrid noise, but it still works! Someday, I'll be a rich writer not a poor one, and buy a new one!
She didn't think I should be on O2 either---but believe me, I need to be. I simply can't breathe well enough without it (I have COPD, remember) so I do use it during the day--and especially if I'm out and trying to walk.
I'm trying NOT to use my electric scooter, since I need to sell it. but it's damn hard to hold a walker when my hands don't work. My cane is a thing of the past. I can't use it anymore.
I have learned to adjust. I've adapted to the very slow typing (from my old 75WPM) and fingers not hitting what I tell them to. I've adapted to not being able to walk well. Really.
What I can't adapt to is the pain. I can't live in constant 24/7 never-ending pain. The spasms in my legs are killer. My left arm (The dead one) contorts into god-awful painful spasms. The right has atrophy, too, it has since last year--but it's not that much worse, though it's weaker--can't clip nails with it, either now--though no where near what the left is. Mild Carpal Tunnel was found in both (not surprising--I'm a writer) but "mild" CT doesn't cause hands to waste away. And certainly not arms.
We'll see what the pain doc does tomorrow when I refuse the shots--thankfully, I have the money for the co-pay now.
Anyone here with back issues that have major leg issues? We know my back is shot--the neuro has all the MRIs from my spine. I'm guessing since she wants to see me that she doesn't think it's causing the problems in my legs. The pain doc doesn't either. He hasn't tested them, but said "They look fine" which is laughable. And true. They Do look fine. Too fine. Hard as a rock fine.
Anyway--I feel better just knowing I MIGHT get something figured out. Maybe I should move to Tampa when my lease is up May 1.
God, I don't even want to think about having to move. There is no way I can help my daughter get furniture down a flight of stairs. We'll probably have to leave it and look for something furnished. (Or sell it) I'm going to hate losing my washer and dryer. I hate laundry mats. I'm sure those will sell. If the roomies move, we'll just keep the apartment and find NEW roomies.
I did find out that I can move to the first floor--since my doctor agrees I shouldn't be doing stairs--without having to pay for a 'moving' fee of $500.
So--there's the latest.
taking the advice of my friends here--I emailed the doc from the ALS Clinic in Tampa and told her what has been going on.
I emailed her a few weeks ago and heard nothing back, so figured she didn't see any reason for me to go up there.
Two days ago, I emailed her again--turns out, she apparently didn't get the first email. She said I need to go. I replied that it's a very long drive for me and that if she thought it was a waste her time to go--I'd see someone here locally.
She replied back this morning--to come--and to make sure I had my daughter drive me. Now, I just have to convince her (she hates freeway driving more than I do)
I have an appt for May 3rd at 11:40.
Honestly--this should be in the "Do I Have" section--mods can move it if it belongs there.
Several have asked--so figured just a post that I had an appt was easier. I'll be renting a car to get there--my beater just won't make the trip safely.
So--the mystery continues.
Something is wrong. I'm not getting better, only worse. I told her about the pain doc wanting to do shots in my back--she said not to do them, that she didn't think they'd be helpful. So, I doubt he'll refill my rx's tomorrow when I see him--because he makes much more $ on shots. S
I'm guessing since she didn't reply back with "There's nothing I can do for you" that maybe she thinks she can figure me out? We shall see. She's a wonderful person, and I really liked her. She added that if I can't get up there--I needed to go to the hospital here. (Which is NOT happening)
If she can't figure it out--I think I'll just learn to live with it. She knows her stuff. I should have contacted her months ago.
I still think that other than my arms--whatever is going on is UMN based--since she found Babinski and clonus in my legs with spasticity. (Is that why she said no to shots in my back? Anyone know?)
In the vein of all the other self-diagnosers on the DO I HAVE section--I think it's PLS. This has just been going on too long to be benign.
I do think that if it WAS ALS, I'd have much more gone by now than just one arm. Having to bite my nails off because I couldn't clip them was my final straw. I need answers.
I need to NOT fall. My knees look like something you'd see on a 10 year old. My daughter is afraid to let me out of her site because if I fall, I simply can't get up alone. Not it's hard. Not it's painful. I just don't have the arm strength to get back up. Period. But that's not new--I've been falling for about 5 years now. it's why I was given the cane, then a walker, years ago.
Remember--she's the one that told me not to use the c-pap and should be on bi-pap instead. The Pulmonologist agreed when I showed him her email. (thanks Allen for the settings--which were spot on) and to ALS Guardian Angels for sending me one. My FCV was in the 70's--not low enough for my insurance to pay for one. The one they donated is old and makes horrid noise, but it still works! Someday, I'll be a rich writer not a poor one, and buy a new one!
She didn't think I should be on O2 either---but believe me, I need to be. I simply can't breathe well enough without it (I have COPD, remember) so I do use it during the day--and especially if I'm out and trying to walk.
I'm trying NOT to use my electric scooter, since I need to sell it. but it's damn hard to hold a walker when my hands don't work. My cane is a thing of the past. I can't use it anymore.
I have learned to adjust. I've adapted to the very slow typing (from my old 75WPM) and fingers not hitting what I tell them to. I've adapted to not being able to walk well. Really.
What I can't adapt to is the pain. I can't live in constant 24/7 never-ending pain. The spasms in my legs are killer. My left arm (The dead one) contorts into god-awful painful spasms. The right has atrophy, too, it has since last year--but it's not that much worse, though it's weaker--can't clip nails with it, either now--though no where near what the left is. Mild Carpal Tunnel was found in both (not surprising--I'm a writer) but "mild" CT doesn't cause hands to waste away. And certainly not arms.
We'll see what the pain doc does tomorrow when I refuse the shots--thankfully, I have the money for the co-pay now.
Anyone here with back issues that have major leg issues? We know my back is shot--the neuro has all the MRIs from my spine. I'm guessing since she wants to see me that she doesn't think it's causing the problems in my legs. The pain doc doesn't either. He hasn't tested them, but said "They look fine" which is laughable. And true. They Do look fine. Too fine. Hard as a rock fine.
Anyway--I feel better just knowing I MIGHT get something figured out. Maybe I should move to Tampa when my lease is up May 1.
God, I don't even want to think about having to move. There is no way I can help my daughter get furniture down a flight of stairs. We'll probably have to leave it and look for something furnished. (Or sell it) I'm going to hate losing my washer and dryer. I hate laundry mats. I'm sure those will sell. If the roomies move, we'll just keep the apartment and find NEW roomies.
I did find out that I can move to the first floor--since my doctor agrees I shouldn't be doing stairs--without having to pay for a 'moving' fee of $500.
So--there's the latest.
But so far, there havne't been any nibbles on CL
