Swallowing concerns/Health Anxiety

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MaeBillB

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sorry this is long!

I am a 29 year old female. In September I had my first baby and a week later my grandmother, who I was very close to passed away after a two year battle with an ALS diagnosis. Around early August, my mother and I visited my grandmother and I witnessed her struggling to swallow drainage. She had to be suctioned several times, and it was heartbreaking to watch. Her initial ALS symptom was drop foot, but her swallowing and breathing issues developed rapidly this year before her death.

Prior to this episode in August, I was very worried about ALS due to widespread twitching throughout my body and my knowledge of my grandmothers illness. I was in my second trimester when the twitching started, and initially, Googled and feared ALS after it came up. This fear was magnified by seeing my grandmother struggle and fearing possible genetic connections. My grandmother is the only family member who has suffered from ALS at this point, so I know genetics should not be a cause for worry. As the weeks passed, the more I learned about twitching, the more I grew to understand that my issues were anxiety related and not symptomatic of a larger problem. I visited with my OBGYN about the twitching and took his advice to hydrate more, take magnesium and calcium, and eat bananas. After 6-9 weeks of twitching, the symptoms went away. I say that because I know first hand the power anxiety can have over physical symptoms. One night when I was stressing in the midst of a hypochondriac episode, my face went numb and I hyperventilated. I have twitched a few times since the initial 6-9 week spell, but I know now that my twitching is directly related to anxiety and worry or possibly hormones during pregnancy. My new fears I am currently trying to work through in a similar way.

After August when my grandmother choked, I began to feel that my own throat was always tight. There were also times when I would drink water and it seemed to tickle my throat. I was not choking, but on occasion I had a tickle that made me want to cough after drinking. I was also experiencing very bad heartburn at the time due to my pregnancy. I would wake up with acid in my mouth and have coughing fits. I began Prilosec and slept elevated, but sometimes I would still have reflux just without the acidic effects. After I delivered my son at the end of September, the heartburn went away, and I stopped taking Prilosec. Around the time of my delivery was when my grandmother’s condition worsened significantly. She was initially put on a feeding tube, but then due to breathing issues a week later decided to forgo the tube and passed. I was one week postpartum and had had and still have had fears about ALS. Watching my grandmother pass the week after I became a mom was a lot to say the least. Two weeks after that my other grandmother passed away from other health issues adding even more stress and emotions to the mix.

I recognize stress could and is most likely responsible for my current symptoms, but my former fear of limb onset ALS which I have now worked through has progressed to a fear of Bulbar ALS due to throat tightness, some muscle twitching in my upper lip and in my left eye when blinking, and occasionally feeling like
I am having swallowing issues. The swallowing issues are now my main concern. I had the cough tickle thing when drinking during and right after my pregnancy (possibly related to heartburn damage), then once a piece of lettuce seemed to stick in the back of my throat, and I had to clear my throat to clear the lettuce. About a month and a half after that, I was eating bread pudding and felt like it just hung on the left side of my mouth right behind my teeth. Again, I had to clear it by clearing my throat a bit to get it to wiggle down. Last night I woke up from sleeping and felt that I could not swallow my spit, but once I was fully awake I could. This has happened maybe one other time in the past. This morning though I swallowed my prenatal pill without water, I can chug water, and can eat large bites of food with no problem. In fact my husband often laughs because since having my baby, I eat faster than him. I am not having speech issues. I sing and my voice usually seems normal, occasionally my throat feels right and I think this is again anxiety related. My tongue and cheeks are moving normally. Sometimes, I feel I have to focus to initiate a swallow though. I have had a lot of postnassal drip lately, have been swallowing more than normal due to anxiety about my swallowing, and feel that I have had dry mouth more often lately. Occasionally, I also feel like I bite the edge of my tongue on the left on accident more than normal.
My husband thinks this is all anxiety related, and I want to believe that. He has had similar swallowing issues for a year (waking up feeling like he cannot swallow, globus sensation, and feeling like he cannot swallow when he can) which his doc said is anxiety, and I know I have been through a lot over the past few months: covid stress/fear, first time mom, death of grandmother due to ALS, two weeks later my other grandmother passing.

Yesterday, I had an appointment with an ENT, she noted that I had large tonsils and congestion. She wants to investigate some sinus symptoms with a CT scan in two weeks. When I told her about my swallowing concerns, she said that I was too young to be having issues and ordered a barium swallow study at the same time. I had hoped she would say it was anxiety, but now I am stressing out about the test because I am afraid it will reveal a neuro problem and ultimately, ALS. I know what seems minor at first to some people can be more serious. This was true for my grandmother when she got her diagnosis, and has given me even more reason to overthink my minor concerns. She seemed so healthy and then all of the sudden she wasn’t. This is the sticking point I think for me and the greatest source of my fear. It felt like ALS came out of nowhere and took her. I have also seen this happen with family friends whose parents passed from ALS. For a disease that is rare, I know of five or more families who have been impacted by it including my own. It doesn’t feel rare even though statistically I know it

My questions: do any of these symptoms sound concerning to those of you who have experience with an ALS diagnosis, particularly bulbar? I know no one here is a doctor, and therefore, you cannot diagnose me, but does the swallowing seem concerning or similar to your knowledge of initial symptoms for bulbar? I know speech issues are most common, but would what I described swallowing wise concern you?
Also, Those of you with family who suffered from ALS did you, like me, struggle with fear of this disease? Any advice?

My plan is to get this swallow test done. Hopefully, it’s nothing, and regardless, I will schedule to see a counselor to deal with my fears, grief, and health anxiety which I acknowledge are problems that cannot be dealt with on this forum.
 

Nikki J

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Hi
I am sorry about your grandmother. It is very very traumatic to watch a PALS struggle to eat / swallow. I still have PTSD from watching my mother, who refused a tube and my sister, who delayed too long.

it is very common for people who have lost a family member to fear for themselves and develop “ symptoms” especially during their loved one’s illness and soon after their passing even when there is no evidence of a familial pattern.

ALS is not so terribly rare in a lifetime 1 in 300 though less common in women. However, its incidence increases with age and is exceedingly rare in a 29 yo woman.

I don’t think your symptoms sound at all typical and I think the test was ordered to cover the ent and to reassure you

please try not to worry, enjoy your baby and come back after your tests and let us know what happened. Don’t let ALS steal any more from your family
 

MaeBillB

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NikkiJ,
Thank you for your kind words and your encouragement. I am sorry you lost two family members to this disease, and appreciate you sharing that it is not uncommon for family members to feel fearful and experience what they think are symptoms. I know that statistically my chances of having ALS at this time are very small, and yet, anxiety makes thinking logically so difficult. I will take your advice and try to relax over the next few weeks.

I often feel so selfish for worrying so much about my own health in the midst of becoming a new mom. Most moms worry about their baby, and I just don’t because of the perfect timing of his arrival. And he really is the perfect baby. He was born just in time to meet his great grandmother and bring hope and the reminder of life to our family in the midst of death. I agree enjoying him is exactly what I need to be doing. I will update once I have the results. Thank you again for taking the time to respond.
 

SusieN

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I agree with Nikki.

ALS symptoms don’t come and go. They may seem a bit worse when you get tired in the evening, but once a symptom is noticed, it’s there. Sometimes overnight. No going back.

Do your best not to self diagnose. It is very rare at your age for familial onset. I lost my mom at 69 in ‘08, and my sis at 62 in ’19. I got the DNA test after my sister passed, and learned my own destiny. I now live every day like this could be my last year of good health, until it isn’t. I am 57 and expect onset symptoms at any time. But I’m not going to assume that the normal aging symptoms I have could instead be onset symptoms, only because they come and go. I just watch for things I know I can do, that I can suddenly not do anymore. Because I cared for my mother and sister, I am very familiar with their early onset symptoms, and am waiting just for those. Examining every little change would just drive me crazy. Learn what to look for so you don’t drive yourself crazy! At your age, if you’re strong enough, get a DNA test. If it rules it out, you’ll never have to worry about it again. Just know that it may also confirm the FUTURE possibility. Again, familial onset doesn’t happen until your 40’s or later.
 

Nikki J

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Susie I am sorry for your family. Genetic testing for an undiagnosed/ asymptomatic person with one affected family member and no identified mutation is not recommended. As you probably know there area number of known mutation (45 plus) but still 25-30 percent of clear FALS cases have no identifiable mutation. testing even an asymptomatic FALS family member if there is no known mutation isn’t usually done out of a research setting

if you are not already doing so please consider joining one of the preFALS studies we are very close to some treatments and there is a goal of preventive intervention. They need biomarker data from carriers
 

MaeBillB

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I did my swallow study this morning and it was totally normal. I am grateful for my health, and I really think a lot of my experiences this year are anxiety based. The doctors also told me I have sinusitis which can cause things to feel like they are sticking. I don’t think it is necessary or recommended for me to get genetic testing done. My mom and aunt have not had any symptoms and are both over 50 and my grandmother had 8 siblings none of whom have ALS. I also know her extended family and again - no other cases. Some day something, ALS or otherwise, will happen and I will die, but for now I am going to enjoy life and stop thinking about this disease. I wish you both the best. Thank you for caring enough to respond to my post.
 
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