Could this be als?

Status
Not open for further replies.

Oconnokm

Member
Forum Supporter
Joined
Mar 16, 2022
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Worcester
They are calling once they can get me in. He is going to ask to put me on the wait list per your suggestion. Initially said could take several weeks. How are you so optimistic and at peace??. Any advice would be appreciated. I feel like I didn’t pay enough attention to my body and the sign have been there for a while. If it’s familial does that mean my children are at risk?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,735
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You are getting considerably ahead of yourself as you are not diagnosed. However someone with no family history has about a 7 % chance of an autosomal dominant mutation. And a93% chance of not having one. A child of someone which an autosomal dominant mutation has a50% chance of inheriting it which does not mean they would 100% get ALS. But anyway the researchers are working very hard to find a way to prevent it. My neurologist has told me not to worry about the children

am I happy I have this? Of course not but I try to make the most out of the time I have.
 

Oconnokm

Member
Forum Supporter
Joined
Mar 16, 2022
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Worcester
I can stop getting ahead of my self. I feel like time is precious and I need to do what can to preserve every minute and the crying isn’t helping. I didn’t mean to insinuate you are happy you have it rather that you have figured out away to deal with it in a positive way. I have been trying to stay off google and follow the nuerologist and advice from your forum. One post mentioned getting money out of my name. So working on that today. My house is not at all equipped for a situation such as this so trying to figure out options for care.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,735
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Money out of your name? To what end? Under 65 Masshealth is income based not asset based. If this is ALS you need all the resources you can get.
 

Oconnokm

Member
Forum Supporter
Joined
Mar 16, 2022
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Worcester
Ok good advise. I did get a positive ANA result today. Is that common with ALS?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,735
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No. If it is not borderline which is meaningless but a definite positive it points away from ALS
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,583
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Oconnokm, I'm going to jump in and I hope that Nikki does not mind. I'm also going to be very blunt about something--ALS is a one-way ticket without a cure. Period. The only questions is how long the journey will last. In my humble opinion, some people continue to be positive throughout the journey because they have accepted the outcome and have decided, with effort and intention, that they are not going to waste the time they have left.. I've learned a lot by watching my husband and others find their way to acceptance--even without an incurable disease I now try to live my life as they did and do. Each day is a gift and tomorrow is not promised.

I have neuropathy. I stumble, I trip, I fall way too often. I must appear drunk to people who see me get out of a chair too quickly. I drop things (it's in my hands and feet). No doctor has been able to determine why I have it, so I live with it.

I understand that your symptoms are much worse than mine, but you need to rejoice that you do not have ALS. Whatever your diagnosis ends up being, TODAY you have hope. With ALS, the only hope is that you can remain positive and embrace life as long as it lasts.

Please focus on finding out what is going on in your body and stop focusing on ALS. Continue to prepare your son--because you could be struck by a car any day. Get your affairs in order--again, you could be struck by a car any day. Do those things even if tomorrow all of your symptoms disappear. Get help with your anxiety while you get to the bottom of this.

Also, please direct your questions to your doctor and neurologist rather than asking here. You've received a lot of great advice and information, now it's time to turn your attention to finding out what IS wrong, and this is not the place to do that. I wish you luck and peace, and hope you find your answers soon.
 

Oconnokm

Member
Forum Supporter
Joined
Mar 16, 2022
Messages
20
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Worcester
Thank you. I am appreciative of all the advise and information. I will stop posting until I have a diagnosis but felt it was the only forum that was available. My heart is with you all. I would like to share a resource with your group. I belong to an organization as a volunteer called LasagnaLove. We made a home made hot meal for anyone in need it’s is free and no criteria. It could be a big help to caregivers who have a lot on there plate. It’s global and have delivered 60k meals this past year. It’s usually lasagna or a hot meal of choice. It’s simple to request one or nominate someone. I loved doing it. If you are not already familiar with it you may want to check it out. LasagnaLove.org.
Love to all
 
Status
Not open for further replies.
Top