Just finished second opinion appointment

Status
Not open for further replies.

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
164
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
@TippiLeigh We are in the same PLS vs ALS boat as you. On one hand, it sucks because of always wondering what is going to happen in the future. On the other hand, I feel so lucky that my husband's progression is slow so far and that he can still do so many things. We are constantly talking about how we just have to try to live each day the best we can and try to enjoy ourselves as much as possible. It is so hard to not let every minute be about my husband's health (or future health).
 

Eydie67

Member
Joined
Nov 30, 2013
Messages
12
Reason
DX UMND/PLS
Diagnosis
11/2013
Country
US
State
texas
City
Flower Mound
I have had PLS for 12 years, diagnosed seven years ago. Texas Neurology, Dallas Tx. Dr. Heitzman I've had numerous EMGs, Blood work, and so many test, 4 doctors and 2 1/2 years later I knew what I was dealing with finally. It has been slowly progressing, very slowly. Thank God My balance is off so I use a rollator, I do have spasms in my legs, but meds take care of it. I have a go go scooter for longer trips. My rt hand is weaker, but still able to write and totally take care of myself, slower . The one thing that has been affected is my speech. I'm still able to verbally communicate but it's getting hard. My advise is don't worry about tomorrow, just deal with each problem as it comes up and enjoy your life today. Do everything you can and don't pend on what you can't do. I pray for all of you with PLS/ALS that they find a cure. I think they are so close!
 

TippiLeigh

Active member
Joined
Jun 13, 2020
Messages
96
Reason
DX UMND/PLS
Diagnosis
07/2020
Country
US
State
CA
City
XXXX
@Eydie67 Thank you for your story! That really does comfort me. I think and *hope* they’re close to a cure too!!
 

Eydie67

Member
Joined
Nov 30, 2013
Messages
12
Reason
DX UMND/PLS
Diagnosis
11/2013
Country
US
State
texas
City
Flower Mound
Your so sweet, the waiting is the worst part of it, I pray you have a diagnosis soon. I lost my son to pneumonia just a few weeks before I got my diagnosis, it kind of put things into perspective for me.
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
86
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
City
Cedar Rapids
@TippiLeigh - and you may not know for a very long time (which is actually great because it means you get a long time!)

@EricInLA, I too was dismissed, not only here, but also by my first neurologist. I felt ashamed, as though I was some sort of hypochondriac or drama queen.

This month is my four year anniversary. The U of I says I have ALS because of EMG. Mayo, who didn’t “see” the same results on my latest EMG there says, no, it’s PLS. The truth? I’ve been to a couple funerals in the past four years and some of healthy people - a surprise heart attack, a car accident.... Truth is, we’re all walking around with a diagnosis, some of us recognize we will die and others, who don’t carry a diagnosis live unaware... It gives us time to prepare,I suppose.
Like you, with young kids, it feels so heavy. We have eleven - the youngest four were 2, 3, 5, and 6 when I got the initial MND diagnosis.
Our society presses us for answers and likes labels but it can be anxiety producing for those of us in limbo. When I came to a point where I just did twice a year clinic and an annual reassessment, but otherwise lived life... it was less weight on me? I also think I needed to be more patient with me. I hated being in limbo.
Just some random thoughts and experiences in case they help.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Blessed Mama, My prayer is that you live to see all your littles grow up. My cousin has 10 and the oldest just turned 16. She home schools all of them and they are great kids.
 

morleyde

Active member
Joined
Apr 4, 2018
Messages
38
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
Experiences like I am going to tell, have happened to me at key moments in my PLS life.

I pulled into a handicap parking space at Walmart recently. As I was hanging my handicap tag onto my mirror, I felt a little frustrated and depressed that I was going to have to get my rollator out of the back seat and hobble like a spastic frankenstien into the store. A moment later, I noticed a young man (half my age-so young) zipping across the parking lot in a wheelchair (no legs). His wife (I assume) got into the front seat. He somehow got into the back seat, pulled his wheelchair into the back seat, got into the front seat and drove off. I said to myself, OK God, I get it.

Hope this helps someone besides just me.
 
Status
Not open for further replies.
Top