Expecting MND diagnosis next week

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MadCybertist

New member
Joined
May 19, 2022
Messages
7
Reason
PALS
Diagnosis
05/2022
Country
US
State
OH
Hi all. I've been having some symptoms since 9/2021. They are progressively gotten worse and I'm currently having issues going up stairs. I would say things are early though for sure since I'm still able to walk relatively well. I'm not new to ALS, as my father was diagnosed in 2/2017 and passed in 7/2017 from Bulbar onset. I was his sole caregiver during that time, so I'm aware of what to expect, etc. Just wanted a place to vent I guess - stumbled upon these forums.

Background:
  • Father diagnosed with ALS 2/2017 and passed in 7/2017 from it (Bulbar onset - 53 y/o)
  • I am currently 38 y/o
  • I started having twitching in my legs in 9/2021. Was mild at first. Continued to what I have today, which is 24/7 twitching and muscle atrophy. I now have some issues going up stairs, but am still rather ambulatory without issues other than needing to support myself going up stairs as my left leg is weak.
  • I saw a neurologist yesterday (5/18/2022) finally, and after my visit and some tests he did in the office, he feels I do have MND.
  • EMG is scheduled for 5/25/2022 to confirm MND.
  • As it stands now, it won't be ALS since it is only my left leg is mainly effected. Based on current twitching, etc. he is rather confident it will be ALS. (I have twitching in other leg, arms, stomach, and face occasionally now too).
  • I do also have a secondary appointment for a second opinion scheduled on 6/2/2022 as well.
  • We are planning to test for familial ALS gene on 6/25/2022 as well (we were trying to have a kid) - those plans may go on hold though
Guess just looking for some feedback/advice/lessons learned that maybe I overlooked the first time through with my father. My father's case was also a bit unique since it was Bulbar and very fast moving.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
868
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
I'm very sorry you lost your father to this so very rapidly. I hope to only welcome you here as the past care giver you are, but you seem well prepared to take this on. It must be very scary especially having already seen how it can go. Your case might be you unique in another (better) way. Reading on here you will get to know many PALS with very different progressions and outlooks on life. This forum is a new great ressource, the information and support I got here helped me enormously to care for my boyfriend (he was diagnosed aged 37 with fALS, his father passed when he was a teenager) and to understand the disease in general and with all it's different faces.

As in many aspects of life I think communication is key. This is nothing that can or should be dealt with alone. The other key is preserving energy. If you make open communication a priority you can take the people around you on this journey. If people know how you feel, they know better how to help you or just how to be around you.

Please let us know how your exams go next week. All the best!
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,365
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi,
It seems like you have everything planned, including a second opinion. I think that's great. I'm hoping it's something else. The EMG will tell a lot but not everything. I know you're prepared for a bunch of tests. I am glad the EMG is so soon. Best to know, one way or another.
I think genetic testing is a good idea, one way or another.
Best wishes.
 
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