Could this be bulbar?

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Katherine777

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Hello there, I am new to this forum. I have been diagnosed with something called ganglionopathy by a neurologist. This was about 7 years ago. It causes pain all over the body due to damage to the small nerve fibres.

I am wondering if you could help at all. I have had issues with swallowing since February last year. It appears to be with both solid and liquids. I had a swallow bedside test where she checked all my cranial nerves and watched me eat and drink but this was all normal. The nurse did not feel that I needed the video swallow.

I have also had issues with speech for the past 5 years. I have had numbness in my throat and tongue and a load of weird stuff going on. I saw my neurologist yesterday who says he doesn't feel the swallowing issue is related to the ganglionopathy I have , he did mention ALS, but said my speech seemed OK.

I am having an endoscopy and he will arrange a video swallow. I explained to him that I thought it was very coincidental I had issue with my throat like ice cold pain for many years, burning tongue that this wasn't somehow related. The reason I am writing to see if you think this fits with any symptoms with bulber ALS, I don't really know why he mentioned it for but it has scared me. Thank you , regards,
 
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Nikki J

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hi sorry for your problems

i think in general speech issues precede or coincide with swallow. The fact that you have had the sensory issues going on which aren’t like ALS and have been long-standing makes me want to agree that it may be somehow related to your current diagnosis even though it isn’t supposed to happen. There are very atypical presentations of most if not all diseases

did the swallow issues start with a particular texture?

if you do not get answers from your test and your neuro still is considering ALS ask to see an ALS/ MND doctor. Your abbreviations confuse me. The only Norwich I know is in Norfolk is there one in North Yorkshire? either way there are MND doctors you could see if it is necessary
 

Katherine777

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Hi Nikki, Sorry to reply so late and thank you for responding.... So basically I need to have a swallow video test. I had a bedside swallow test. She said all the cranial nerves were normal, she said my swallow was normal so she refused to do the video swallow test.

The swallowing issues started last year when it was hot. I found I was drinking more, there seemed to be a delay, almost like I was swallowing a bubble of air when drinking water, I have had a lot of gurgling noises previous to this. I also noticed food was getting stuck in my throat, for example i was eating chips, it happened.

I had noticed issues with my speech since 2016 but I wasn't sure if this was the pre-gabilin (lyrica) which was prescribed for my nerve damage. I don't take it anymore, however, I am still having problems, its not slurring but pronouncing words,. However when I saw my neurologist, he said I didn't have a speech problem at all. He is in his late 60's so he said he would know,. I

ts confusing to know whats causing what. I have an inflammatory neuronopathy and the cause has not been discovered yet. I have had all sorts of genetic tests as other family members have the same but they haven't had issues with speech and swallowing. My speech only seems to have got very slightly worse over the past 2 years. I work for the NHS so I've asked there if they think I am slurring, I've asked my best friend but she says she would tell me if I was.

Whatever it is, its seems to be very slow going, the swallowing is about the same as is was last year. It just seems weird as before the swallowing I was getting strange feeling in my throat for about a year, i thought I had something called laryngeal sensory neuropathy and just put it down to the nerve condition, then the swallowing issues started, it seems strange it all happened at the same time but neuro thinks its not related!

I was also wondering, could I have a normal cranial nerve exam if there was an issue? Would this have shown up by now?
 
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affected

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That's not how bulbar swallowing issues start I can assure you. My husband died of bulbar onset ALS. Sounds like the doctors don't see ALS either so maybe just work with your doctor, let them direct things and stop searching for ALS. It could make all the difference.
 

Katherine777

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Hi affected, thank you for your response. I wanted to ask, I have had speech issues for about 3 and half years now, I am not slurring words ...if this was bulber onset would it have progressed by now, would it be very noticiable? Would you get normal cranial nerve exams if there was a problem? Sorry for asking the questions... the symptoms are very confusing and because i have another condition, it is hard to know what is what
 

affected

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No problem Katherine. Yes indeed it would have progress by now, in fact you would be unlikely to still be alive.
You aren't describing bulbar ALS symptoms. I know it's hard to not know what is going on.
 

Katherine777

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Thank you affected, I am so sorry to hear about your husband.
 
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