Hithere20202
New member
- Joined
- Mar 18, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I’m a 34 year old female with some pretty scary concerns. I would be lieing if I said I wasn’t constantly analyzing myself now and anxious about it all.
I recently went to a neurologist because I was experiencing a mild left facial droop and some swallowing difficulties (feeling like liquids weren’t going down well, clearing my throat a lot, coughing after liquids at times and having to double swallow). I also have been very fatigued lately with generalized weakness. In addition, I have lost about 18 pounds in the span of 3 months without effort. I am already quite thin. The weight I lost is not due to the swallowing trouble because that is recent- within the past few weeks.
The neurologist said the droop wasn’t very noticeable but noted bilateral eyelid ptosis and did a very comprehensive exam which took over an hour. He noted fatigueable ptosis of eye lids, slight weakness of eye closure, as well as fatigue-able left neck weakness (SCM muscle) after having me push against resistance many times which he rated a 4/5 strength. All other strength testing was normal throughout body.
He also noted a slightly brisk jaw jerk and a slight droop on my left lower lip. I have also felt like my tongue is swollen lately and is getting in the way of my teeth when I talk. He noted my complaints but said he didn’t notice any speech impairment. He examined my mouth, tongue and face- and noted normal facial movements, normal tongue strength and no tongue or face fasiculations on examination and also normal palate movement.
All other reflexes and examination throughout my body were normal. I also told him of body wide fasicultions and a quick in office (20 minutes maybe) emg on upper and lower limbs was unremarkable/clean. He did not emg my mouth or face. I also have numbness of my toes which comes on and off which emg didn’t show any issue.
He feels with my eye weakness, swallowing complaints, marked fatigue and generalized weakness we are most likely looking at MG. He prescribed me a medication Mestinon which is helping with general muscle strength fatigue and eyelid ptosis but does not seem to be helping with the mouth droop much, feelings of swollen tongue getting in my way or swallowing trouble. I feel like my gag reflex is hyperactive. I also have been having some recent issues of shortness of breath.
He ordered a ton of blood work to rule out certain cancers, support an Mg diagnosis and some other auto immune stuff. He also ordered a repetitive nerve stimulation test of my face and a chest CT. He also ordered a swallow study. He did not order any other tests. I am waiting on blood work and other tests coming up in the next few weeks.
My questions are
1. Can als of the bulbar type present this way?
2. Does it sound like I should push my neurologist for more testing to specifically rule out als?
3. Does this sound like als to you?
4. Does bulbar als ever present without noticeable speech issues to others but feelings of big tongue getting in the way?
5. Can als present with weight loss in this way without atrophy? I know with swallowing issues it might but I’m eating just fine.
Thank you for your time
Also want to add that I do also choke on my saliva at times and feel like my throat is swollen or something
I recently went to a neurologist because I was experiencing a mild left facial droop and some swallowing difficulties (feeling like liquids weren’t going down well, clearing my throat a lot, coughing after liquids at times and having to double swallow). I also have been very fatigued lately with generalized weakness. In addition, I have lost about 18 pounds in the span of 3 months without effort. I am already quite thin. The weight I lost is not due to the swallowing trouble because that is recent- within the past few weeks.
The neurologist said the droop wasn’t very noticeable but noted bilateral eyelid ptosis and did a very comprehensive exam which took over an hour. He noted fatigueable ptosis of eye lids, slight weakness of eye closure, as well as fatigue-able left neck weakness (SCM muscle) after having me push against resistance many times which he rated a 4/5 strength. All other strength testing was normal throughout body.
He also noted a slightly brisk jaw jerk and a slight droop on my left lower lip. I have also felt like my tongue is swollen lately and is getting in the way of my teeth when I talk. He noted my complaints but said he didn’t notice any speech impairment. He examined my mouth, tongue and face- and noted normal facial movements, normal tongue strength and no tongue or face fasiculations on examination and also normal palate movement.
All other reflexes and examination throughout my body were normal. I also told him of body wide fasicultions and a quick in office (20 minutes maybe) emg on upper and lower limbs was unremarkable/clean. He did not emg my mouth or face. I also have numbness of my toes which comes on and off which emg didn’t show any issue.
He feels with my eye weakness, swallowing complaints, marked fatigue and generalized weakness we are most likely looking at MG. He prescribed me a medication Mestinon which is helping with general muscle strength fatigue and eyelid ptosis but does not seem to be helping with the mouth droop much, feelings of swollen tongue getting in my way or swallowing trouble. I feel like my gag reflex is hyperactive. I also have been having some recent issues of shortness of breath.
He ordered a ton of blood work to rule out certain cancers, support an Mg diagnosis and some other auto immune stuff. He also ordered a repetitive nerve stimulation test of my face and a chest CT. He also ordered a swallow study. He did not order any other tests. I am waiting on blood work and other tests coming up in the next few weeks.
My questions are
1. Can als of the bulbar type present this way?
2. Does it sound like I should push my neurologist for more testing to specifically rule out als?
3. Does this sound like als to you?
4. Does bulbar als ever present without noticeable speech issues to others but feelings of big tongue getting in the way?
5. Can als present with weight loss in this way without atrophy? I know with swallowing issues it might but I’m eating just fine.
Thank you for your time
Also want to add that I do also choke on my saliva at times and feel like my throat is swollen or something