Old 07-13-2018, 05:15 PM #1 (permalink)
Jessxwolf's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Punta Gorda
State: FL
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1
Jessxwolf is on a distinguished road
Jessxwolf Jessxwolf is offline
New Member (Say Hi)
Jessxwolf's Avatar
Join Date: 2018
City: Punta Gorda
State: FL
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1
Jessxwolf is on a distinguished road
Default Concerning Symptoms

Hello everyone. I am new to this forum and site. First, I just want to say that my thoughts and prayers are with everyone who’s life has been touched in any way by this horrible disease.

My 66 yr old father was recently diagnosed with ALS in April 2018. We don’t know of any other family members that have had the disease. I don’t know if he has any type of genetic mutation. Needless to say, this has been an immensely stressful time in our lives. This is where my own strange symptoms begin...

A couple of weeks after finding out about my dad’s diagnosis, I went to lift my right arm to take a drink out of a cup and it felt hard to hold my arm up in the area of my inside elbow. This feeling came out of nowhere and I had never had any thing like this occur before. The feeling went away over night but the next day the inside of my elbow was very sore for about a day. My arm returned to normal.

A couple a days later, a twitch developed in the same arm in my shoulder and would stop intermittently. Along with this came a sensation of internal trembling in my arm. This twitching/tremble continued for about a week and suddenly started affecting my left arm. I also at times had feelings of burning on the inside of both elbows and when doing certain tasks like typing on my phone or computer my arms would start to feel extremely irritated.

This continued for about 3 weeks then suddenly stopped and disappeared. All good for a few weeks then the same symptoms returned in my right arm.

This has continued on and off for the last couple of months. Some days my arm feels completely normal and some days the symptoms return. Today, the symptoms have returned in my left arm as well. Now, both arms are feeling extremely irritated after working on my computer this morning.

I know I am stressed out and my anxiety level is high since my dad’s diagnosis but this is terrifying me. Because of his diagnosis, I am so afraid of what these symptoms could be. Your thoughts?

Last edited by lgelb : 07-13-2018 at 08:18 PM Reason: paras
Jessxwolf is offline   Reply With QuoteReply With Quote
Old 07-13-2018, 07:23 PM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,275
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,275
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Concerning Symptoms

Hi. Sorry about your dad

This is extremely common for family members of PALS especially children but it can even strike a non biologically related persons such as a spouse. This is such a devastating disease and when it is a case of SALS it is often the first exposure to ALS on such a personal level

Your symptoms do not sound like ALS nor do ALS symptoms come and go as you describe

As the child of SALS your lifetime risk of ALS is only a smidge above someone with no relatives affected- extremely low.

Please see your doctor for reassurance and help dealing with your grief and anxiety. You need to be your healthy self for your dad

Last edited by Nikki J : 07-14-2018 at 04:39 AM
Nikki J is offline   Reply With QuoteReply With Quote
Old 07-13-2018, 08:23 PM #3 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,812
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,812
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Concerning Symptoms

Nikki is totally on point, Jess -- this is your body telling you that you need another way and possibly outside help to cope. Sometimes post-dx of a family member, our own fitness/diet/social regimens go by the wayside, as well, and just a little tweak back toward baseline can help quite a bit.

Do what you need to, so you can be there for your dad.

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
Old 07-14-2018, 04:33 AM #4 (permalink)
NinaP's Avatar
New Member
 
Join Date: 2018
City: Ptolemaida
State: Kozani
Country: GRE
Interest: I am a caregiver for someone with ALS/MND.
Posts: 48
NinaP is on a distinguished road
NinaP NinaP is online now
New Member
NinaP's Avatar
Join Date: 2018
City: Ptolemaida
State: Kozani
Country: GRE
Interest: I am a caregiver for someone with ALS/MND.
Posts: 48
NinaP is on a distinguished road
Default Re: Concerning Symptoms

Hi Jess. My mum was diagnosed on April too while we were going to doctors for 5 months before her diagnosis. Since may i have been having all kind of symptoms. From slurring to food stuck on my throat to my hands arms hurting my left leg huting burming feeling weak. Everything. I have posted several times here. I now try to ignore tge symptoms and blame it all on being tired. I called my neuro to book an apointment she told me its probs from stress and being tired. I visited an ENT she found my mouth in perfect health and told me its stress and being tired and i should drink water. Today i woke up with my leg burning again. We need to be strong for our parents. And then collapse after evrrything is over.
NinaP is online now   Reply With QuoteReply With Quote
Reply

Tags
als, anxiety, arm, burning, diagnosed, diagnosis, family, father, genetic, life, lift, night, shoulder, symptom, symptoms, twitch, twitching


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Advice on Symptoms - ALS/Bulbar Symptoms/Tongue deviation Gwennie123 Do I Have ALS? Is This ALS? 2 02-24-2016 09:24 AM
Actual ALS symptoms, or just me looking for symptoms that aren't there? cmejia1115 Do I Have ALS? Is This ALS? 1 09-16-2015 01:52 PM
Bulbar symptoms? Plus other symptoms reallyworriedguy Do I Have ALS? Is This ALS? 94 11-04-2010 11:35 AM


All times are GMT -5. The time now is 12:46 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016