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Jds329

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Hi all,

Thank you so much for taking time to read my questions. I truly appreciate it. I know ALS looks different in each person but I wanted to ask a few questions about potential early symptoms. For the last year or so I've noticed that when I take a drink sometimes the liquid seems to rush to the back of my throat and I slightly choke (like accidentally going in the wrong pipe). This has happened several times over a year and isn't enough to change eating habits but when it happens I've thought it was a bit off from normal drinking habits. It made me nervous a few times.

Then over the last seven months or so I've had post nasal drip quiet a bit. I am able to cough and clear the mucous most of the time. It is worse in the mornings (my husband has commented it sounds like I'm hacking up a lung) and like I said, I can usually clear the mucous. It seems like I have more phlegm than usual for a while and sometimes has a tinge of pink in it. My dr said she wasn't concerned. Sometimes it feels like a lump but I can usually clear it after swallowing a few times. Also sometimes my mouth feels dry and sticky.

Additionally sometimes when chewing I feel like I have to swallow twice to get it all down (perhaps because of mucous). And occasionally when swallowing spit it feels a bit strange (best way I can describe it).

About me: I'm 32 yr old female and a new mom to a 14 month old. I tend to worry but also want to make sure I'm not overlooking things. I also had a mother-in-law pass away from Bulbar onset Als.

Any advice or thoughts welcome. Again, thank you!
 

affected

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My husband died of bulbar onset ALS. Yes all are a bit different, but bulbar onset symptoms are very predictable and describable. Great news is you don't describe them at all, especially when you say it all started a year ago. ALS is progressive, you have just had a few odd things that happen at odd times, that's not ALS. All the best!
 

Jds329

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Thank you so much for your response. I'm so sorry to hear about your husband.
 

Jds329

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Hi there- I have one last follow up question- do you usually know if liquids are in fact going down the wrong pipe? The odd swallowing problem feels a bit like my throat doesn't work at closing up as fast as usual, thus, liquid goes to the wrong pipe. I have to clear my throat lightly, a few times a day after trace amounts of liquid go the wrong direction. I am making an appointment with my gp next week but thought I'd clarify and ask my question. Thank you so much!
 

ShiftKicker

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The best person to answer your questions is a doctor. That way you can show and describe in person and there are no misunderstandings.


Best wishes
 

diagnosed2016

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Go to an ENT this all sounds like sinusitis
 

Jds329

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Thank you- making an appointment this week. Hoping to get answers this week and hoping it's nothing big.
 

Jds329

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Thank you everyone for your responses. I saw my Dr. on Monday and shared with him my fears. He was very kind and spent quite a bit of time with me and said that nothing I was describing abnormal nor did he see any weakness, twitching, abnormalities in my examine. (He has 38 years of experience). He said he would allow me to take a swallow test if I felt like I had to have it to move on but he really hopes I choose not to get the test as it seems completely unnecessary based on my symptoms/exam. He also suggested seeing a Psychiatrist for anxiety as I have a history over the last year of escalating anxiety over health related concerns. I share this hopefully to encourage others that are severely suffering from anxiety to not try to get symptoms to "fit" out of fear and to address anxiety if that seems to play into health concerns at all. Anxiety can steal so much joy and many times, the anxiety isn't caused by real diseases. The mind is an incredibly powerful thing and can cause real symptoms. When you study one area of your body constantly, it will appear to do odd things. My encouragement is to listen to Drs. and get help for anxiety as to get yourself out of the dark hole.

My mother-in-law passed from bulbar onset ALS so I know the devastation this disease causes. My goal now is instead of worrying, to channel that energy into fundraising for a cure so we have a future without ALS.
 

ShiftKicker

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That is truly wonderful news for you. It sounds like you found a very empathetic and thorough doctor- which is a gift when experiencing concerns about health. I am very glad to hear they took the time to listen, and to provide advice and information.
My condolences on the loss of your mother in law.

Best wishes
 

Jds329

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Thank you ShiftKicker. I truly appreciate you taking the time to respond. Best wishes to you.
 

Jds329

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Quick update- my swallow test was normal. I'm listening to my Drs, removing fear of ALS from my mind and seeing a Psychatrist for anxiety tomorrow.

Thank you to all who provided feedback and listened. Best wishes to you all.
 

Nikki J

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Excellent. Thank you for sharing. Best wishes for a long and happy life
 
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