Concerned, Family History

[angievon]

Hello everyone,

I appreciate you taking the time to read this post as there's so many other concerned people on here. I've had strange symptoms that came on suddenly since Thanksgiving. First, it started with trying to get up off the couch and my left leg felt like it wouldn't work... almost like it was asleep - heavy and tingling. Then I had leg cramps/twitches for days and then the twitching spread to my entire body. A month and a half later and I still have twitching all over - mostly in legs, and left side perceived weakness. One morning I tried to lift my left arm above my head and I couldn't, my shoulder was shaky and stiff, then a sensation of hot pain, and just like that it went away and I was able to move it. My left leg has gotten quite stiff and both legs are painful and my thighs/knees are looking much thinner. In the midst of this, I've had fatigue and shortness of breath.

My Nana and my Uncle both passed from ALS and I'm feeling quite concerned. I have a Drs appt next week to start testing. I'm curious if any of this sounds like ALS and if there's any specific tests I should request from my Dr. Thank you in advance.

PS - I am grateful for the knowledge you all share. It's clear that the medical field knows very little about ALS and unfortunately, those who are affected are the ones to help educate. Keeping those with the disease in my heart.

 

[Nikki J]

It doesn’t sound like the start of ALS with symptoms in multiple areas and sensory symptoms. Your doctor will tell you if you have any concerning clinical signs

what is the status of your relevant parent? If they did not inherit the family mutation ( assuming there is one which is likely but with two family members only not definite) you can not have it either. How old were the PALS? How old is your parent? How old are you?

 

[angievon]

Nikki thank you for your response and questions. My mom (66 years old) is still alive and well and has chosen to not get tested for the gene. Her mom was in her late 70's and her brother was in his 60's. I am 39 years old.

 

[Nikki J]

If there is an identified mutation then you can choose testing. However if your family manifested at 60-70s the odds are against it manifesting in you now. see your doctor and get evaluated but don’t worry

 

[angievon]

Grateful for your time Nikki. I'll see what the doctor says.

 

[Nikki J]

Let us know what s/he says

 

[angievon]

Curious if you suggest starting with a PCP first or getting a referral for a neurologist?

 

[lgelb]

It's always best to start with a PCP when you feel ill, as ALS is a relatively rare disease and so there are thousands of more likely explanations, most not neurological, that a PCP can help narrow down. S/he can also help you track your strength and other parts of your clinical picture that might concern you.

Best,
Laurie

 

[angievon]

Thank you, Laurie!

 

[angievon]

Since I last posted it took a while to find a good PCP that takes my insurance, so in the meantime, I went to urgent care for shortness of breath and extreme fatigue. All of my bloodwork came back normal, chest X-rays and heart screening normally.

I experience twitching all over - some visible and some not (like bubbles popping sensation), fatigue, limbs falling asleep, loss of muscle in my hands and thighs, loss of appetite and weight loss, left-side weakness... this is so strange. With a family history, I'm feeling worried - especially since the rest of my lab results came back clear.

 

[affected]

Work with your doctor - without that we can't say more than it doesn't really sound like ALS onset. Please let us know the outcome.