Stephanie R
New member
- Joined
- Jun 11, 2021
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
Hello - Thank you for permitting my presence here & for the opportunity to make some enquiries about my symptoms & share my concerns. I am grateful.
I will turn 53 later this year. Please hang in while I fill in the long history. I hope you can be patient while I get to the point.
I have been followed by a wonderful ENT Specialist for over a decade now. I had my 1st episode of sudden onset hearing loss in 2010. My ENT has tried earnestly over the years to decipher these episodes, my hearing loss, vertigo, tinnitus, etc. I have seen him pretty routinely over the years and now have annual visits with him for my ear related issues. Last September I had a total hysterectomy. When I arrived in recovery I was unable to respond to the anesthesiologist or medical staff due to a mouth & throat that were completely dried out. I was utterly parched! (I have had no mucous in any of my mucous membranes since.) Within 2 days of surgery I had glandular swelling (salivary gland/parotid) could not eat or drink without unbearable pain. Hearing loss occurred by end of October. I went into emergency department feeling unwell. The "unwell" was difficult to describe. Fast forward to March of this year. I went to my ENT for my annual visit. When he entered the room he indicated my hearing was "status quo", etc. at which point I said "ok, but let's talk about my nose & my mouth/throat. When he was making observations he mentioned something about my tongue, which I didn't catch. I believed he was looking at my saliva production. He suspected possible Sjogren's Syndrome/Disease & sent me for lab work. Lab work indicated auto antibodies for Mixed Connective Tissue Disease. (Sjogren's is a disease within MCTD's overlap). He wanted to see me for follow up in 8 weeks.
When I returned after 8 weeks, I had developed significant swallowing issues, especially with liquids. (In 2016 I first noticed with just regular swallowing of my saliva my throat made noises, like I had crepitis in my throat. I thought it was just one of my quirks. My voice also went hoarse at random in the middle of speaking). On this visit the ENT looked in my mouth again & remarked something again about my tongue. He went to his keyboard & spoke out loud as he typed "tongue fasciculation". He then went into my throat using a scope. When he removed it, I asked if my throat was constricted (that's how it feels). He answered "no", but that when I spoke the muscles were not properly opening & closing. He made reference to it out loud again when he went back to his keyboard. He then mentioned that he was referring me to a Neurologist that specialized in Motor Neuron Disease. He then looked me square in the eyes, deadpan face. My eyes began to well. He simply nodded & said "Ya". I have a relationship with this ENT & I could tell by his changed demeanour on this visit that he was addressing something serious. Since the visit with the ENT a handful of weeks ago I now have fasciculations all throughout my body. I can feel them in my stomach & lower intestines during bedtime, making it difficult to sleep. Swallowing difficulty is worsening by the day it seems & I have dreadful acid reflux & regurgitation. I have begun to have speech difficulties. I have also had odd jaw jerks & occasionally a swift inhale as though my lungs are misfiring. I am concerned that this is Bulbar onset ALS. I am so scared! It has been almost a month & I have not heard about a Neurology appointment.
I am finding it difficult to keep my fear at bay & am troubled by the lack of urgency being exercised in the follow up. I am grateful for any feedback, reassurance, prayer, enlightenment, symptom confirmation, probability. I am so troubled.
THANK YOU for reading.
In addition, I forgot to mention. I have had a dry unproductive cough for as long as I can remember. I had a bad bout of pneumonia in 2019. In March I developed angular chelitis, I believe as a result of drooling in my sleep.
I will turn 53 later this year. Please hang in while I fill in the long history. I hope you can be patient while I get to the point.
I have been followed by a wonderful ENT Specialist for over a decade now. I had my 1st episode of sudden onset hearing loss in 2010. My ENT has tried earnestly over the years to decipher these episodes, my hearing loss, vertigo, tinnitus, etc. I have seen him pretty routinely over the years and now have annual visits with him for my ear related issues. Last September I had a total hysterectomy. When I arrived in recovery I was unable to respond to the anesthesiologist or medical staff due to a mouth & throat that were completely dried out. I was utterly parched! (I have had no mucous in any of my mucous membranes since.) Within 2 days of surgery I had glandular swelling (salivary gland/parotid) could not eat or drink without unbearable pain. Hearing loss occurred by end of October. I went into emergency department feeling unwell. The "unwell" was difficult to describe. Fast forward to March of this year. I went to my ENT for my annual visit. When he entered the room he indicated my hearing was "status quo", etc. at which point I said "ok, but let's talk about my nose & my mouth/throat. When he was making observations he mentioned something about my tongue, which I didn't catch. I believed he was looking at my saliva production. He suspected possible Sjogren's Syndrome/Disease & sent me for lab work. Lab work indicated auto antibodies for Mixed Connective Tissue Disease. (Sjogren's is a disease within MCTD's overlap). He wanted to see me for follow up in 8 weeks.
When I returned after 8 weeks, I had developed significant swallowing issues, especially with liquids. (In 2016 I first noticed with just regular swallowing of my saliva my throat made noises, like I had crepitis in my throat. I thought it was just one of my quirks. My voice also went hoarse at random in the middle of speaking). On this visit the ENT looked in my mouth again & remarked something again about my tongue. He went to his keyboard & spoke out loud as he typed "tongue fasciculation". He then went into my throat using a scope. When he removed it, I asked if my throat was constricted (that's how it feels). He answered "no", but that when I spoke the muscles were not properly opening & closing. He made reference to it out loud again when he went back to his keyboard. He then mentioned that he was referring me to a Neurologist that specialized in Motor Neuron Disease. He then looked me square in the eyes, deadpan face. My eyes began to well. He simply nodded & said "Ya". I have a relationship with this ENT & I could tell by his changed demeanour on this visit that he was addressing something serious. Since the visit with the ENT a handful of weeks ago I now have fasciculations all throughout my body. I can feel them in my stomach & lower intestines during bedtime, making it difficult to sleep. Swallowing difficulty is worsening by the day it seems & I have dreadful acid reflux & regurgitation. I have begun to have speech difficulties. I have also had odd jaw jerks & occasionally a swift inhale as though my lungs are misfiring. I am concerned that this is Bulbar onset ALS. I am so scared! It has been almost a month & I have not heard about a Neurology appointment.
I am finding it difficult to keep my fear at bay & am troubled by the lack of urgency being exercised in the follow up. I am grateful for any feedback, reassurance, prayer, enlightenment, symptom confirmation, probability. I am so troubled.
THANK YOU for reading.
In addition, I forgot to mention. I have had a dry unproductive cough for as long as I can remember. I had a bad bout of pneumonia in 2019. In March I developed angular chelitis, I believe as a result of drooling in my sleep.