Bulbar Symptom People
My Story might not be your story.....Who are the other bulbar people that have been progressing for a bit? If any that have had subtle signs that have continued to progress? Anyone digging into any natural holistic things that have seemed to help at all?
Reality is setting in more and more despite what some on here have said that no way have I had subtle symptoms for 3.5 years and this be MND. Within the last 2 months swallowing has definitely become more and more of an issue. Stiffness in both upper thighs have become evident and a struggle. Weakness in all areas continues to decline despite trying to maintain what I have. Yes I still work, Yes I still enjoy my days, Yes family is going on vacation so I still count my blessings daily! No I'm not controlled by anxiety or by assumptions of whether or not my body is continuing to decline. Do I have all the answers, nope. What I do know is that I have had very minor symptoms that all started 3.5 years ago and have continued to progress for what some may say slowly but for me not so much. Does it seem equally symmetrical all the way around, yes. (Left hand being a little weaker and smaller than right but not by much but can still tell, balance issues worsening. Upcoming swallow appt. again this month after not being able to complete the manometry. Which is the doctor who said this was bulbar ALS almost 2 years ago, but since neuromuscular teams aren't able to identify anything, welp we wait and keep pushing the best we can to stay mentally and physically strong. Pretty sure they will look at throat and say irritation again because well you can feel that. Hoarse voice, pain when talking more and more. Some on here say it's not possible for it to be ALS(Bulbar), how do we really know? Subtle symptoms for 3.5 years with swallowing and tongue issues and more and more other areas progressing. Testing hasn't shown any major issues but I certainly have issues happening can we chalk them up for other things welp we can but not convinced that we also can't say its the progression that has been happening for multiple years now and that a private neurologist detected some PSW and then others didn't. Minor Swallowing issues that showed on MBSS and minor PFT issues. Is this the case that some researches will say welp their tests weren't 100% clear before so they never had a normal test from the beginning? That honestly drives me crazy. Will they say those issues were none related....I scratch my head when we can't detect anything when your body is functioning at a much lower ability than before. Progressive weakness that has now caused more and more twitching and buzzing, pain, burning. Ive never been one to say much about the twitching because I see those beat down from mentioning it. Have I had it from the beginning yes, is it worse now in the weaker areas, yes. Has my glutes been the worst and now the face and hands, yup. Vision effected yes, eye lids effected yes, temples and scalp effected yes. How in the world are we not able to detect anything when we have lost most muscle in areas that is quite noticeable. Mind blowing! When at the end of the day you know you've lost measurable muscle and a test can't detect it, that's unimaginable. Is that due to the muscles being effected are small ones so the damage is not detected as easily. Tongue has thinned considerably how can you tell, well you can definitely "feel" that, do people say you can't "feel" mnd, yes, but I can tell you, you can absolutely tell when you have tongue issues.....This may irritate people but reality is for me, multiple emg's full body (last one a year ago) no sign of neurodegenerative disease, and a face one in November that didn't detect anything (all by neuromuscular clinics). Multiple NFL by an off lab that doesn't factor BMI show regular, yes, every other test possible showing nothing, yes. At the end of the day, still have to think we absolutely are facing what some call " the rarest of rare" which I disagree with I believe that testing isn't able to detect until a certain threshold (failure) is met. I believe the medical society where I live is so blind to subtle symptoms they turn their heads. Have I read some studies, yes not as many as some, but nothing shows us really how long things are happening before an obvious clinical weakness, only then do we have statistics, from what ive seen. Recent things Ive seen by a doctor who studies mnd showing differently that possibly years that people are dealing with symptoms before it's detectable....What I have done is for over a year, taken lots of lion mane, L serine, larger doses of b12 at times, alpha lipoic acid, not regularly but cut lots of carbs and sugars. Taken some additional supplements inconsistently. Taken care of my mental health cause well doctors are brutal and not very help besides trying to mask symptoms, lol, if I have one more "migraine" med thrown at me I could start my own pharmacy. I know what a headache is and that's not what I have. I have pain in my head due to muscle loss and the strain of holding my head up from weak neck muscles....Been thankful for everyday that Ive been given because none of us are promised tomorrow. Thankful for a supportive family and friend base that has watched the decline and not able to do anything about it. Sorry it's long and trust me when I say this those of you that have to guess if you have weakness then it's probably not weakness. You know when you have weakness ,you absolutely can feel it. Your ability becomes altered and things become more and more challenging. Normal everyday things.