Scared!!

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Smokeygirl111

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Hi everyone! First off thank you for your time PALS and CALS. I want to share my experience with losing a PALS and also express fear of my own recent symptoms.

I am a 39 year old female. My mom was diagnosed in 2018 with limb onset ALS, and passed away in January 2019 at the age of 74. We are not sure how long she had been having symptoms for since she did not live in California at the time. She expressed to my aunt in 2017 that “her hands felt funny”. She could not use her left hand after a while, it was difficult to brush her hair, etc. it twitched some and then the muscle died. Then her right hand went. Then her legs. By the time she was diagnosed summer of 2018 she went very fast after that and passed last year. My aunt was her CALS. According to my aunt and grandmother we have no one else in our family who had ALS. Most everyone has lived to 80+ and died of Alzheimer’s and /or diabetes. We also have a history of mental illness in our family. I have Schizoaffective disorder. My mom’s mom is still alive at 99. No ALS. My mom had never been genetically tested to see if she had SALS or a gene for FALS.

About two months ago I started experiencing strange symptoms to me. My left leg from the thigh down and especially my left calf were in excruciating pain. I could hardly walk. I also had pins and needles, tingling and numbness in my lower left leg and going into my foot. The pain almost felt like cramps. I chalked it up to not being used to standing all day. I had just started a new job as a grocery clerk and I am obese at 5’2 and 205 lbs. i am on Seroquel, Prozac and metaformin for borderline pre-diabetes. I figured I hurt myself pushing carts around or something. I went to two doctors and I talked to a third over the phone. They all said it was Sciatica and prescribed anti-inflammatory pills. The pills didn’t work so I started taking Neurontin instead. I also went to PT which didn’t do anything . At first the pain was while standing or walking but now the symptoms switched and the pain is better but still pretty bad sitting or laying down. Walking I feel better. Also feels like electricity shock from my thigh to leg or cramps after sitting, like when stand up.

Now my leg feels a little weak and I noticed my left shoe is looser then it used to be. I have also been twitching not just my left leg but my left bicep , right and left thigh and even my left eyelid! I can still go up stairs, walk use my hands, stand on heels and tiptoes, etc. but I think It might be harder to do so I dunno. I had a lumber MRI but I am waiting for the results. I also have been feeling dizzy lately like if I bend down to pick up something at work I feel like I lose my balance. I have not had any blood tests recently. Like in the last 6 months. My blood tests were fine six months ago. Even blood sugar was under pre-


I’m terrified my mom had FALS gene and I inherited it. I have no other siblings and my aunt is my mom’s half sister so I’m afraid it came from my grandfather’s side. Or maybe my mom was the first one with the gene. I’m so scared my dr thinks I might have a compressed nerve and if my MRI is clean she wants me to go to neurologist. This all reminds me what my mom went through when she was looking for answers of what was wrong with her hand. I am also afraid to get tested for the gene, my aunt wants me to genetic testing to ease my mind but I am terrified.
Thanks so much to anyone who answers . I know this all sounds like maybe health anxiety. I am sorry to bother you all PALS.
 

KarenNWendyn

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Please read this if you have not already done so

It sounds like health anxiety and definitely not ALS. Pain, pins and needles are sensory symptoms and point away from ALS. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. FALS would be unlikely without a history of multiple affected relatives. When it does occur, family members tend to be roughly the same age at onset.

So the good news is that you are in the wrong place here.
 

lgelb

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I'm sorry about your mom.

Smokey, you have no reason to be terrified. Even if your mom had FALS (which there is no reason to believe, given lack of other family history), the ages of onset wouldn't even be close to matching up, as they typically do in FALS. Nor does ALS manifest with pain such as you have described.

Catching up on your blood work to see if your sugar is stable would certainly be a good idea, since diabetes can damage the nerves, as you know. Likewise, Seroquel and Prozac can both have side effects, even after months or years of use, that affect sensation and balance. Your diet and hydration on your new schedule are always worth reconsidering. Finally, obesity and a day on the grocery floor aren't always going to be a comfortable combination. It might be time to spring for some new insoles, at least. But if the pain is worse sitting or lying down, a lumbar spine problem such as the MRI checked for, and that carrying extra weight doesn't help, is certainly plausible as well.

In short, your situation is nothing like your mom's, and there's no reason to connect the two even if they were similar. In all likelihood, the keys to feeling better are in your hands.

Best,
Laurie
 

Smokeygirl111

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Lost a loved one
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Thank you Karen and Laurie for your replies. My doctors except for my PT doctor all have said nothing about ALS. They all think the same thing, it’s health anxiety. I think my mom’s death is fresh in my mind and I still haven’t recovered from it. I would like a therapist to talk to about it but I am without one right now and on a waiting list because of COVID. Still waiting on MRI results.

I’m curious because you both say if I do get it , inherited wise. I’ll be roughly the same age as my mom but she never smoked and I was a pack a day smoker for 20 years. I wonder if that could trigger it earlier for someone with FALS or genetic predisposition? Also we both lived by the ocean (me and my mom) but she was living in Arizona for the last 10 years of her life while I am still in Southern California by the beach.
 

lgelb

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You don't have FALS, so your concerns are moot. There is no "if you have it, if you get it," at all.
 
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