Hi Ness, PCP are able to accurately detect clinical weakness, so this, and the 6 month wait really makes the chances of ALS almost non existent. Of course seeing a neurologist will be a good thing as there are literally hundreds of things that could be going on.
I wish you the best in health and continuing sobriety.
Just wanted to update. feel my condition is getting worse. now, once was a sore throat after covid has turned into what feels like my throat is permanently open. I have not choked on anything yet but i can feel it affecting my breathing when I lay down. I constantly have to clear my throat every 30 seconds or like when i talk. my voice is hoarse but I feel like its only if I talk for longer than a few sentences. if I move my throat up i can feel my sore throat. my tongue is also not cooperating with me. its fully functional, but the back of the tongue towards my throat is sore 24/7 and has been for the last month.
It also feels like I have to put effort into speaking. And have been crying pretty much everyday.
Legs are so weak going downhill after a short walk. right and left arms are hard to even hold up my phone these days. I have to like prop them up.
Have MRI on the 30th.(last one 5 years ago was clean).
Just to reassure you - if you are worried about this being bulbar symptoms it is nothing like bulbar symptoms. Go see your doctor if you have long term covid issues as they are common from this awful virus.
Also remember that PALS feel perfectly normal and it is constantly surprising that their bodies start failing. Nothing like what you are describing at all.
Hi Ness. I understand you are incredibly stressed and anxious, which is made worse by the long await times to see a specialist. I know this must be very tough.
I am a pALS that has been very fortunate to have had slow progression to this point. I also have had both lower and upper GI issues for some time, which has gotten worse since my diagnosis. A while back I also began to experience some of the very throat issues you describe, ie., some slight hoarseness after speaking for a while, a feeling of a “lump” in my throat, slight soreness, feeling a need to clear my throat more often than normal. However, my tongue functions normally, I have no speaking, eating or drinking issues, and no choking whatsoever.
After seeing my PCP and communicating with my neurologist, both felt that this is likely not Bulbar progression, but instead what is known as “silent reflux,” especially given my history. Unlike GERD, heartburn is not really a symptom, thus the “silent” part, but it is still reflux of stomach acid into the throat. Everything you describe and I also experience are common symptoms of silent reflux.
I think it’s probably much more likely your anxiety/stress has messed with your gut and created the swallowing issues you describe than MND.
The thing is, i was having all these symptoms pre covid. So right now my mind is trying to convince itself this is all related.
I've tried back and forth to look for other explanations. Except a neuro. The neuro dismissed me 5 years ago after an MRI and weakness test. left hand perceived weakness and shaking was only in my left hand then. So obviously I need to get a reevaluation.
I want to say my leg weakness came around the time of my first vaccination. The hand weakness has been around for years. Today, my thumb is shaking uncontrollably when I try to straighten it.
Again, this is all going to be seen by a neuro, I just needed to vent I guess. I just wanna see my boys grow!
There are forums for undiagnosed people that may be better for you to vent on. Asking the terminally ill and their carers to keep gong over the hand holding is not helpful for you.
I hope your next appointment brings you peace of mind as we just are not seeing ALS, and only a doctor can really work this through with you.
Do return and let us know the outcome once you have a diagnosis, all the best.