Still waiting for EMG and Swallow study - Bulber onset

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Katherine777

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Sorry to post here again. I really didn't want to but i feel i have no choice, i am 42 year old female by the way. I am becoming very anxious about my ongoing symptoms and as everything is hold with this corona virus all my tests have been put on hold. I posted here back in January i think. This is when is saw my neurologist.

Just a bit of background info, i have something called ganglionopathy, it causes like a stinging pain all over the body,its nerve damage, i was diagnosed a few years ago. I noticed a few years back that I had funny feelings in my throat which i just put down to the condition, thinking well its affected everywhere else so must be affecting my throat. However, it seemed to have progressed, and when i drink liquids, it seems to be i will gulp gulp and then there is like delay, i can still swallow,i don't choke, but this has been happening now for a year, it has more or less stayed the same. I have also had for example chips stuck in my throat.

I have also noticed very subtle issues with speech going back a few years, even back to 2016, for example, at work i used to always struggle to say " holiday", didn't think much of it as at the time i was taking Lyrica so i put it down to the meds but not on meds anymore, However, i've noticed that the consonant issue is getting worse, for example, i have issues with the letter "l" and R sometimes i can't seem to pronounce the letters, its really embarrasing when i'm on the phone, Ill seem to muddle the consonants up too.

My neurologist didn't seem concerned about my speech but i didn't see him for long enough for him to notice, but its been very subtle over the years. I am waiting to have an endoscopy and a swallow study, then after this an EMG, however everything on hold....So do you think it can present this way? Sorry if i have asked this before but it does all seem a bit weird with the pronouncing words issue. I also have some tongue and gum numbness, i know it normally isn't part of this condition but it seems to happen all at once.
 
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KarenNWendyn

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Here is the previous thread

You do have a choice whether or not to post. You are working with a neurologist who didn’t seem concerned about your speech. We have already given you our opinion that your situation doesn’t sound like ALS. Our opinion remains the same. This is not the right forum for you. Please keep working with your doctors and addressing your questions to them.
 

Katherine777

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Thanks Karen for taking the time to reply, it is frustrating having to wait for tests etc... sorry to bother you on here. Just with the speech issues and swallowing i felt it was consistent with the bulber form. It is confusing as i have another neurological disease which is rare so i don't know what causes what. Because the symptoms have worsened , it is just worrying me as to what it can be, but thank you again for your time.
 

affected

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As Karen said, you did have a choice to post - I will say again that you are not even beginning to describe ALS. You are obsessing over what is happening to you. Even with this pandemic, if your doctors thought for a moment you had this disease they would be getting you diagnosed. Please go back and tell all this to your doctor - posting here is no longer appropriate at all. All the best.
 
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