Scared that I could have early onset symptoms… please help

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Misterbushy

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Hi everyone,

I would just like to say that you are all in my thoughts and prayers for what you are going through. Especially those that have been diagnosed, you are brave and beautiful and strong and I love you.

I’m really seeking some guidance or advice. I’m a 26 years old woman. To start off, my grandmother and my aunt (her daughter) both passed away from ALS. I have witnessed the disease firsthand since I was a child and my grandma’s death scarred me as I was only 13. I miss her everyday.

I’ve been having a slew of health problems for the past two weeks. To be quite honest, I am an absolute nerve job when it comes to health anxiety and I have definitely been stressed out. I’ve had off and on heart palpitations for the past few months and recently two weeks ago they started again out of nowhere. I was also having some chest heaviness and my right arm felt a little weak. My blood pressure was 130/80 when I went to my doctor and he didn’t seem overly concerned but set me up for a halter monitor to check out the palps. They began to calm down as the week went by but then I started having constipation (I have always struggled with gastro problems as my mom has IBS and it seems I got it from her, my sister does too). Eventually I finally started to go again but it’s been diarrhea ever since.

The “weakness” or I guess I could say tightness has persisted in my right arm and now I’m starting to feel cramping in my right hand. I also have noticed for the past few months that my right hand has been cramping more than usual but usually when I’m holding something like a heavy pan or when I was painting my grandpas house. I now have also started to feel a slight heaviness in my right leg and the other night I felt pins and needles in both of my feet but this is off and on. I still have the chest heaviness off and on as well. I also used to struggle with vertigo really bad a few years ago but it has gotten tremendously better and doesn’t bother me much anymore but recently I have been having more episodes of lightheadedness. I also have had a few episodes of almost passing out after slightly intense exercise. My right eye was also feeling tense for a few days before all of this happened but that resolved itself. Only other symptoms I’ve had are off and on head/neck tightness, fatigue, lack of appetite, and trouble sleeping. I also feel like my tongue is fat or I’m noticing how I swallow more. I know a lot of this can be caused by stress.

I’m completely and utterly exhausted. I’ve cried for days wondering if it’s going to happen to me next. I feel like my body has been hit my a truck and I wasn’t even worried about ALS at first until it popped up in my head the other day and I started googling. Hopefully this doesn’t seem selfish as I know many of you also have family members that are going through it right now. But it’s scares me to death to think that I might get it too. My dad is 57 and hasn’t shown any symptoms thank God. My grandma and aunt had symptoms start years before they both passed away around the age of 63. My dad and other aunts have never been tested for the gene and they never will as they don’t want to know. My grandmas started out as carpel tunnel in her hand and I’m afraid that that’s what I’m experiencing now. My sister also complains about her hand cramping.

I know I have a higher chance of getting it than other people. But I’m scared that it’s already starting and that I’m just now noticing the symptoms getting worse. It’s destroying my mental health. I do want to seek therapy for my health anxiety.

If any of you can share your thoughts or advice, I would really appreciate it.
 

Nikki J

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Assuming your family is FALS ( 2 people could be coincidences though unlikely) The chances of it affecting you now when the others were 60ish is vanishingly small. Further if there is an inheritable genetic mutation your dad onyl has a 50 percent chance of carrying it. If he doesn’t you don’t. If he does your chance of getting it would be a further 50 percent. So odds of even being a carrier are in your favor.

you say the gene? Is it identified? Which is it?

you have obviously seen a doctor. You need to continue to work with them. To me your symptoms don’t add up to anything like ALS. Mr Google is terrible diagnostician. You say you have health anxiety and want to address it. You definitely should. I suspect many of your symptoms will improve or vanish. You also need to stop googling and visiting als groups. Good luck
 

Misterbushy

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Thanks for responding Nikki. Unfortunately my grandma’s cousin apparently also had ALS so it seems to run in the family. Again, my dad has never gotten tested and we don’t know if it’s actually from a gene mutation or not but we assume it is because of the fact that it has taken 3 people in our family now.

I’ve heard before that the gene can skip generations so even if my dad doesn’t get it I could still wind up with it or my sister. I’m not sure if that’s accurate or not though. Mr Google is absolutely terrible and my mental health has been destroyed because of it. I know that I’m young and should be living life care free but my grandma’s and aunt’s deaths have affected my family and I very much. No one else worries about it like how I do though.

I also notice that the more distracted I am, the less I feel these symptoms. Like my hand isn’t even cramping at all today because I’m distracted with work. I’m typing normally. I started to freak myself out that I can’t swallow properly but I know that I need to cool it.

Even if I did somehow wind up having it, there’s nothing I can do about it anyway so I might as well enjoy my life while I have it no matter what gets me eventually. Thank you for your patience and kindness Nikki, I appreciate it. I think I need to seek therapy to move past their deaths and help my health anxiety.

Much love and luck to you.
 

Nikki J

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It is possible if it is a less penetrant mutation for a carrier to live unaffected yes but what I said is that if your dad is not a carrier you can’t be. This is basic genetics. However the age issue matters a lot

therapy sounds like an excellent idea. Losing someone to ALS is hard losing more than one relative is excruciating. I have lived this my whole life but you shouldn’t let ALS steal anything extra
 

Misterbushy

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Hi Nikki,

Unfortunately I will never know if my dad is a carrier or not as he has no interest in getting tested. I just pray that he doesn’t ever develop symptoms.

I am seeking therapy now and have noticed that some of my issues are subsiding a bit. I was panicking for the last few days that my speech was starting to slur and that my tongue felt too big for my mouth. I am mispronouncing some of my words where I will accidentally say “black” instead of “back” but I would assume that’s not considered slurring. I haven’t had any actual issues with swallowing or chewing besides maybe a little from my tight jaw (most likely from stress).

I also still have tension in my right arm as well as in my legs and neck. Leg tension comes and goes and I notice that my right arm and legs sometimes go a little numb while I’m sleeping but it usually gets better as I start to move around.

I also feel off balance and have for quite some time now before any of the other things started happening. My calves sometimes quiver in specific spots and I can feel when they do, mostly behind my knees and upper calf area. I have also had an off and on chest heaviness and off/on mild cough problem for a few months now that I have been seeing a doctor about and it was confirmed that I have a benign irregular heartbeat but just trying to figure out why.

All of these symptoms are scary and I keep relating them all to ALS because of the family history. I don’t know if this is true but if it is familial, do people usually start showing symptoms so young IF they do have the disease? I’m wondering if maybe I should seek out a neurologist just to be on the safe side but I don’t know if that’s feeding into my paranoia or not.

Sorry for the long message and I sincerely appreciate your time. This has been a deep fear of mine since I was a kid and it’s very hard to let go of it when it’s taken people you love.
 

Nikki J

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No people with familial ALS do not start showing symptoms as you describe years before onset. Your odds of being a carrier even are only 1 in 4. Getting ALS decades before the rest of your family did isn’t the way FALS presents You need to do whatever you have to to get past this and start living your life. If going to a neuro will help ok but it sounds like you need to deal with grief, anxiety and ptsd Really. There are a lot of people dealing with FALS in their families. Many of them are known carriers , more are 50/50 at risk, a lot are of an age to worry realistically but they are functioning and not letting it rule their lives. You need to get to that place
 

Misterbushy

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Thank you so much Nikki!! You’re really helping me so much. The symptoms still scare me but I do think you’re right that it’s a mental battle that I must get through. I guess I got scared about really early onset because I’ve seen stories of people in their 30’s who start to develop symptoms where it was familial. I know I’m not 30 but it freaked me out.

The information you provided is very reassuring and I can’t thank you enough. I’d like to become apart of the fight to find treatment for this disease and I think that would help me get through over the fear as well. Keep going to the ALS walks, raise money, and support the community. Maybe I will even get myself tested one day so that I can end the cycle with me if I do wind up having the gene. I wouldn’t want another person to suffer, especially any of my children.

I’m going to follow your advice. Please know you are in my thoughts and prayers. You, the other CALS and PALS, my grandma, and my aunt are all heroes to me and I commend your bravery and strength.

All the best,

Ashley
 

Nikki J

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The piece that you don’t seem to get is different FALS mutations affect carriers at different ages. The people who are seeing in their 30s ( which as you point out is not you even) almost certainly carry a different mutation than your family. You said your people died around 63.
 

Misterbushy

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That’s true Nikki, thank you for reminding me of that. I’m still continuing to have muscle twitches in my arms, legs, and back as well as chest heaviness and sometimes a feeling like I can’t swallow properly or that my jaw gets tired from chewing or talking.
My lip has also started to go a little numb.

But I keep bringing myself back to your explanations and reminding myself of the facts that you presented to me. Also, I should know that ALS symptoms don’t just randomly start all at once within two weeks. I would think I wouldn’t develop so many things at the same time. And I still have the same muscle strength that I did three weeks ago.

So although I am still scared of my symptoms trying to figure out what’s wrong, I am starting to put ALS out of my mind more and more. Thank you for that.

If I eventually find out what’s wrong with me, I will come back to this post and share an update to help any other future worriers out there.
 
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