My turn in the bowl...

mytmouz

Member
Joined
Aug 17, 2019
Messages
10
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
I have been lurking for a while, but decided to join in. I was officially diagnosed 3 weeks ago. My local neurologist and I suspected as much, but treated for CIDP until it could be confirmed. He sent me for a referral ah UAB, and they did a 3rd EMS, which confirmed it. I had other issues, such as a vitamin B1 deficiency, diabetes, which had started back up, unbeknownst to me, and I had a fall in which I broke the L3 lower lumbar, and jammed a vertebrae in my neck. I ended up tripping a couple of months after that, which may have been my first drop foot episode, and cracked both knee caps. The fall was 1017, and the possible drip foot appearance was 01/16/18 . I did not know I had the fractures as I did not visit the Dr. Too busy working, they were found on my initial MRI's.

I thought the occasional drop foot issues were due to my sore back and knees. I was limping heavily on my right leg at this point. I had 2 weeks of on the job classroom training, and a weeks vacation, this allowed the breaks to heal, but I noticed the limp, and made a Dr. appointment. Before the appointment date, I returned to work, and could no longer climb a ladder, so I left and went to my GO, who told me to go to the ER, and tell them I had a neurological issue. 13 hours later I got my MRI's, and a referral to my first neurologist, in 6 weeks. I didn't care foe her, as she wasn't listening, fortunately, she stopped practicing in that office, and I got my current neurologist.

I was sent home from work on 08/102018. I limped out, but I was walking. In a week, I was on a cane. Started pt , and vitamin and diabetic regimen, and put the cane down mid Sept. The therapist and I thought end of Oct. I would be well. I than started progressing downhill. Mid Oct, I was back on the cane, by 2nd of Nov, I was using a walker, and by mid January, I was in a wheel chair for any distance. It seems like a 6 week cycle, roughly, on the progression. My left leg hadn't much issue prior to march of this year, it is worse than the right now. Neither work below the need. I have A power chair and. Hospital bed that lift, I can stand with a walker when they lift, and shuffle 90 degrees to transfer from one to the other, that is the extend of my mobility.

The EMS done 3 weeks ago shows some progression in my right arm and hand as well. Looks like it is determined to take me out, as I am determined to stay...

One I had the confirmation, I felt better. I didn't think U was stressed, but I was trying to come up with options.

Thanks for the vent, it seems to be hard on my family to talk about, which I understand...
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,574
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Welcome, Mouz. Sorry you have to be here. Vent here any time, and we'll always support. Still, your family will need to talk in order to deal over time, so keep working with them on the terms of engagement as they process. Do you have kids?

Best,
Laurie
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
10
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
Welcome, Mouz. Sorry you have to be here. Vent here any time, and we'll always support. Still, your family will need to talk in order to deal over time, so keep working with them on the terms of engagement as they process. Do you have kids?

Best,
Laurie
Thanks for the support. I have 2 adult daughter's. They both have health issues, but are currently my caregivers while my wife is at work. My wife had had back surgery in the past, as well. I am not concerned about me, I worry about their health, and my daughter's have to drive 40 miles one way, to get to me. I also have an Aunt, who is more like a sister, that helps me greatly, but her husband is a stroke victim, so she is a caregiver for him full time.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,420
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Sorry to have to welcome you here. It’s a good place to vent and ask questions. Lots of supportive folks here and quite a bit of collective experience.
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
10
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
After looking at my post, I have to apologize for the poor spelling. I used my phone, and the keys are small. I need to do a better job of proof reading...
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
136
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
We take typos. Eye technology isn't much better. This is a great place to vent and seek suggestions and comfort. I'm sorry you had to join the club, but welcome nonetheless.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
635
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
welcome, typos definitely not judged here!
 

Signe

Active member
Joined
Aug 17, 2017
Messages
66
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
Welcome, sorry your here like this. Don't know typos are fine, we don't judge. Hang in there.
 

KenM

Member
Joined
Jun 21, 2019
Messages
19
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
You have lots of support here. Very sorry about your diagnosis.
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
10
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
I was transported by ambulance to the local teaching hospital on August 25th for shortness of breath, and partial facial numbness. This hospital is new to me, so they looked at the records I brought (They were impressed that I had everything but the last EMG). And basically redid most of the tests to verify everything. They think the reason for me coming in was sue to stress. They kept me unrmtil the got insurance approval for in patient therapy in an affiliated provider attached to the hospital. Due to no confirmed diagnosis, my insurance carrier would not pay for any equipment. Now that I have A diagnosis, they are going to concentrate on better, more user friendly equipment, and insurance will be on the hook for it. The facility states they treat ALS patients, although I don't see anything about them being a certified center, anywhere. Wish me luck...
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,297
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
Wishing you luck indeed but you don’t need to depend on luck alone! Plenty of good information here for starters!

I’m sorry your Dx was confirmed, but I’m glad you can get more help now.
 
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