Old 08-07-2018, 10:16 AM #1 (permalink)
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Default Seeking help on my symptoms, scared and depressed

Hello all,

I am desperately seeking for help regarding my symptoms. Doctors do not seem to listen to me or take me seriously so it would be really appreciated if anyone with the knowledge of ALS symptoms could help me.

I am an immigrant living in Canada, Toronto, 26 years old female.

Everything started in February 2018. One day I woke up with very sore tongue with inflamed papillae that has not gone since then. I always have this burning feeling and it also looks scalloped on the edge. The same time I noticed that I cannot swallow as easy as it used to be, I felt like the liquids stuck somewhere in my throat or even go to my nose, so I developed constant phlegm that I cannot swallow or spit. It is just constantly there giving me hoarse voice. I went to GP that time and he did not examine me thoroughly, and prescribed me acid medicine for 2 months. It did not help at all.

Then the doctor referred me to ENT specialist who did not notice anything bad just a bit of inflammation at the back of the throat with some mucus. I also did barium swallow which came back perfectly fine. I did not feel any weakness at that time (June 201 and had a lot of energy doing activities. But last month everything suddenly changed. I started to feel shortness of breath. One time after I swam just 10 minutes I experienced difficulty breathing and could not recover next 2 hours getting weakness and chills. That night I could not sleep waking up every 30 minutes. I thought I had problems with my heart so I went to ER next day but they said everything was fine. But I never recovered from that day. I never go to deep sleep, wake up constantly (even though feel very tired and want to sleep) feel like my muscles forget to breath. One week ago I got fasciculations all over the body but now they are mostly in my legs and they never stop. I asked my doctor to refer my to neuro but he said it takes a few weeks to see him. I have no problems with my speech so far.

My question is could it be some type of bulbar or respiratory onset? I know given my age it is almost impossible but I cannot find any other explanation of my symptoms. I had all kind of blood test which are perfect, abdominal ultrasound, chest X ray, EKG, barium swallow.

I am new to the healthcare system here and feel very scared an depressed because no one seems to care. I am here in Canada by myself and I feel very depressed. I am sorry for such a long text but I just do not know how to cope with all this. It takes too long to see a doctor.

Any advice would be appreciated.
Thank you all.
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Old 08-07-2018, 02:12 PM #2 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Hi, LK,

I don't see any ALS in what you wrote. Likely the fascics are secondary to lack of sleep. You might ask your primary care physician about a sleep study to see if there is a cause for your waking up. Meanwhile, you might try more physical activity during the day, at least stretching and bodywork such as Pilates, swimming, ballet, tai chi, etc. to see if you can help yourself relax and sleep more deeply. If needed, your PCP can also suggest a short-term sleep aid.

Since you are new to the country, it is easy to feel alone and depressed. Why not check on Meetup, Twitter, Facebook, a community center, etc. for places/events where you can meet people?

Best,
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Old 08-07-2018, 02:42 PM #3 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Hi Laurie,

Thank you for you quick response. I was thinking about sleep study, not sure if it is easy to request. I will try!

For exercises, I am still trying to walk a lot, but for activities such swimming or running I feel exhausted pretty quickly due to shortness of breath.

I was thinking about fasics due to lack of sleep because it started 2 weeks after impaired sleeping and did not pay attention until I google the symptoms. Now when night is coming I feel so scared. Currently I sleep maybe 4 hours (not deep, see lots of dreams). If I drink alcohol before night I fall asleep better as long as it is in my body but then I wake up in the middle of night when it is gone.

The main concern is my swallowing and always inflamed tongue (it is always burning it drives me crazy). My mouth is always very dry.

I have a question, would ENT specialist see any muscle weakness when he examined my throat with the tube? (He asked me to swallow when he was doing so).

I have been here in Canada since 2014. I have some friends, but I do not have my family here. It is difficult to be with my thoughts one on one. I am also married, but my husband is thinking I am crazy and have nothing to worry about.

Thank you for you support again!!!

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Old 08-07-2018, 02:47 PM #4 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

I am sorry, Laurie, used your nickname instead of your name!
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Old 08-07-2018, 05:42 PM #5 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

If your swallowing was weak, yes, he would have seen it, as would the barium study. But ALS in no way resembles what you have described.

If your tongue is dry, try a saline spray, Biotene spray, and/or drinking more throughout the day. B12 and iron deficiencies can play a role in a cracked tongue, as can something like Sjogren's, which you should be evaluated for.

Most people can't make 4 hours of sleep work, and alcohol is not a help long-term as it fragments sleep. Figure out what you can do in terms of noise, temperature, humidification, etc. and find an alternative. It might be anything from herbal tea to music.

The good news: you are in the wrong place.
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Old 08-07-2018, 06:03 PM #6 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Laurie,

Thank you so much for your reply! I will try to manage my symptoms while waiting for the appointment, but I feel much more relieved after your comments.
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Old 08-07-2018, 09:27 PM #7 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

I just re-read your posts. It sounds like it might be GERD. Did the ENT put a scope through your nose to examing your throat or just look in? At any rate, nothing you posted sounds like ALS.
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Old 08-07-2018, 11:32 PM #8 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Hi KimT,

Thank you for your reply.
Yes, the ENT doc inserted a tube through my nose and said that my throat looks rough and red at the back with some mucus. He said that it looks like GERD or Silent reflux. I am waiting for endoscopy now.

It's been half a year now with these symptoms so I was trying to figire out what is wrong. One day I came to the point that it would be my throat muscles and learned about ALS (google is evil). But like you and Laurie said it has nothing to do with ALS so I have some relief now.

I am deeply sorry for everyone who has this disease.

In my experience doctors didn't have time or just didn't want to find the root of my problem that is why I had to figure it out myself. (Googling basically). And this is not a good approach I know.

Thank you again!
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Old 08-30-2018, 08:03 AM #9 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Hello everyone, I’m sorry to bother you again , but I have some update since my last posting which terrifies me. Please I need your thoughts about it!
My swallowing issues got worse during this month, I feel like it’s harder and harder to swallow. Also I got so much phlegm that sometimes I feel like I’m going to choke on it. And I always feel like something is coming up my throat and I have to swallow it. I wouldn’t write again if this was the only issue.
I started to have breathing problems last month which wake me up during the night many times ( feel like I just stop breathing). I did spirometry test last week that showed weird results. My FVC and FEV1 are lower than normal range which suggests I could have a restrictive lung disease and one of them is ALS.. but my chest x Ray showed hyperinflated lungs which is usually with obstructive ( I don’t know if there was a mistake). So confused. But my breathing is so shallow now.
I continue to have body wide twitches
Btw I saw a neurologist 2 weeks ago. He checked my reflexes and did EMG of left leg and arm. But not Bulbar region. Everything was clear.
I am so scared that this may be als , bulbar and respiratory onset, because many of the symptoms match.
Please help!!!

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Old 08-30-2018, 11:01 AM #10 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Adding.
Just saw a doctor and he doesnít know what is going on, he said that my results seem to be normal even though not perfect. It makes me scared more. He has no clue what causes my breathing to be shallow or what stops me from breathing at night. So if there are no other physiological signs that could cause the problem it could be something neurological. I donít know how to relax myself now.
The doctor is going to order a sleep study for me, maybe itíll give me the clue of the problem.
Please share your thoughts I would really appreciate it.
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Old 08-30-2018, 03:42 PM #11 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Were you also evaluated for Sjogrens? Have you discussed nutrition or allergies with anyone, or tried some of the self-care strategies I mentioned? Have you seen a pulmonologist or did someone else order the sleep study?

Again, ALS doesn't seem part of this picture, but the sleep study is certainly a good idea and should help determine any treatment. Please post when you have further test results or see a pulmonologist. Until then, I don't think we can be of much help.

Best,
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Old 08-30-2018, 03:43 PM #12 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Hi LK,


I'm saddened to read that you're got so little support, no family, and apparently an emotionally non-supportive husband. Where did you immigrate from? Wherever it is, you got an outstanding education. I can see that in your writing.


But you didn't graduate medical school, so you need to stop thinking about ALS. You didn't describe anything at all like ALS. We're all really sure you don't have it--and we ought to know.


Normally I would say you need to leave now, because we can't help you. But I'm going to try to help you if I can.

Perhaps the scalloped and painful tongue comes from sucking on your cheeks while you're asleep. That draws the tongue up against the teeth and pretty quickly shreds that delicate flesh.


Everything you wrote is VERY consistent with a person who is alone, scared, and worried. Figure out what is stressing you and you'll be on the way to recovery.


In the meantime, you don't have ALS, so every minute you spend here is just reinforcing your fears.


Tell your PCP you'd like to see a therapist. You need to calm down.



Good luck.
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Old 08-30-2018, 04:41 PM #13 (permalink)
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Default Re: Seeking help on my symptoms, scared and depressed

Mike and Laurie, thank you very much for your quick responses and for the compliment about my education, it made me smile
I came from Russia to Canada for studying (got my second 3 year program college degree here). Basically I studied and worked full time 7 days a week to pay off tuition. I have always been strong and healthy. I just started to fully enjoy my life here a year ago when I got a good job and money that I didn't have to save for college.. and then all these health issues came out. I don't even have a family doctor here yet.
I got checked for Sjogren’s syndrome (negative) as well as for other possible autoimmune conditions. My nutrition seems to be good for me since my lytes and vitamins are within normal range. I have not been allergic to anything in my life, but maybe there is something, I have not discussed it yet. I also walk a lot (can go out for all day). I try to relax before sleeping, sometimes I do well (have good nights with 3-4 times of waking up), sometimes I don't sleep at all, just trying to. Doctors look at my tests and reports and don't understand why I have symptoms. The last doctor I saw today looked at my spirometry results and wasn't concerned even though it was a little out of range (lower). And it was actually hard for me to blow, I felt like all my muscles tense that I even had rib pain after. But he didn't order more tests even when I asked for it. He also said that hyperinflated lungs could be normal for someone like me (I am tall and skinny). I don't really think so. One thing he agreed to order is a sleep study which I am waiting for to be booked.
Meanwhile I will try to stop thinking about anything bad in terms of diagnosis and enjoy my life. Whatever it is.
Thank you for your support!!!

Last edited by LK92 : 08-30-2018 at 04:46 PM
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