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Jessxwolf

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Jul 13, 2018
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Reason
CALS
Country
US
State
FL
City
Punta Gorda
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?
 
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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
 
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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
 
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.
 
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