I have had some pretty significant bulbar symptoms and have been given a lot of feedback regarding this subject from great people with firm diagnosed. There is "bulbar als", which I really was concerned I had because I couldn't swallow. It wasn't that it was painful, but it was so fatiguing. I would literally have to rest my tongue and jaw and the chew, rest it, chew and I ended up pretty thinned out from the whole ordeal in both spirit and physically. It is not painful to be so fatigued, but it is so hard to be functional. But, thank goodness, I started getting some relief of some of the symptoms...for example, my left thumb pad was so bony and my bottom right of the same hand had a pretty good indent, but I have been working on strengthening it and it is working. I can see improvement. From what I understand, this does not happen when you get ALS. You don't get better, or at least it is pretty darn rare.. and that is the devistating nature of this horrible, humbling disease.
There are other things that can cause throat issues...myasthenia gravis, throat clicks because the cartlidge is rubbing in your throat, lyme, lambert-eaton, esphogeal cancers, larynx cancers (and basically all but the last one are arguably better than ALS. I read that people can have things that have been stuck in the back of their throat for quite a while that actually cause infections, swollen lymph nodes, etc..yes, it is gross, but actually quite good news. So, (I think) it is important that you go get a painful throat checked out and hopefully you will get some great news.
If there is one thing I have noticed, it seems like it is human nature to have this doom/fear looming in the brain when you don't have a diagnosed. It is so unsettling. I admit that I still ponder the possiblity of having ALS at times but I am doing everything I can to just try to get my body back to functional and thanking my lucky stars that someday I may actually be able to walk normal again. I have fasted, juiced, gone gluten/soy/casein free, struggled through exercises and, in general, tried not to obsess too much about it and gained a new appreciation for life and many people's journeys through all this. I have seen qualified doctors..more than I ever care to see again, so I am going to go with the fact that a couple things have improved (some even slightly). Oh...and P.S.....No alien encounters for me
Thank you so much for your posting! I had another woman tell me she thinks that it might be Epstein Barr or MG. I dont twtich for days sometimes and then it comes back with a vengence. Sometimes I have trouble swallowing, sometimes it is painful- and sometimes it is not.
What were you diagnosed with? MG if I remember- What other therapies are you using?
I have experienced painful swallowing in the past, but it comes and goes. My main concern is a combination of factors that would indicate bulbar issues and ALS. That is, swallowing problems, atrophy of the tongue, fasciculations of the tongue, tongue weakness, slurring,etc., all appearing in close temporal conjuction. Then, there are those other symptoms that are not part of a formal symptom list for ALS, but do appear (biting the tongue, for example). By the way, one symptom I have that is very bothersome is that every once in a while, small amounts of saliva drop into the esophagus or the trachea, and I start to choke /cough. I'm assuming this is related to atrophy to the back of my tongue. The healthy tongue would normally keep this saliva from going down the wrong pipe, but my tongue may no longer be able to do this.
I have one of my kids small squishy ball toys and I have one of those clampy hand exercisers. At first it was a matter of literally making myself open and close my hand as exaggerated at I could as many times a day as I could remember. It was slow to progress, but now I can do the squishy ball and a few of the clampy thing (sorry I don't know the name, it just has a "P" on it, but I have seen them at Target before). At first it was so discouraging because it is uncomfortable to build muscle back, so that is why I thought I could not, but the fact that it has improved in looks and strengh shows it is not a dying muscle, maybe diseased, but not dying.
I have not been diagnosed with MG. I had an AcHr test (binding and blocking and modulating) and it came back clear on the first two and indeterminent on the modulating. I do not have face paralysis as many people whith MG have, but I have blurred & double vision, especially toward the end of the day and it is so hard to explain, but I have a fatigue in my leg muscles and my arms that is so intense that I feel sometimes my legs are not my own anymore, especially when I try to do the stairs. I never was a great cook, but I have a hell of a time keeping my arms up long enough to even pretend to cook anymore. Try using that excuse to get out of dinner everyday All this has changed the way I walk because my muscles just don't do their job and although it is not exactly "painful", it is unbelievable to me that I simply just cannot walk at times. The other thing is the throat/tongue fatigue. I always feel awkward eating something that takes effort to chew because I can chew maybe three times and then I have to rest my tongue and jaw, then I can move the some food with my tongue ... then rest my tongue ..so it is quite a process. I am no spring chicken, but I am too young for this
I do also have tongue fascics and I choke from the saliva too. I am always afraid I am going to aspirate the fluid. I think that this is a symptom that could be ALS or MG. It is so tricky because there is such a crossover on symptoms and it gets hard to tell if atrophe is from lack of use or something else and fascics are on a laundry list of diseases including fibromialga, ms, bfs, mg, lyme and a few others. Even tumors on the spine or in the brain can cause some of these symptoms, and that is no so bad when you put it into perspective.
Just pray and hope for the best, try as hard as you can to not be obsessed with ALS and live your life as if it were in the sense that you prioritize so that you will not have regrets. And if you have money, donate it to ALS research and if you are brilliant, find a cure. And let people know that this disease is out there so it can get the attention necessary to change the nature of it.
I am waiting on two things: a single fiber EMG, and three blood tests. One is called the MuSk test. One is a Striational Antibody test. And, another AcHr modulating test. People can still have MG without testing positive in the blood, or sometimes I guess it can take a couple of years to get a firm diagnosis if it is not a typical case. Sometimes you have to look for the vibration in your muscles called "jitter". I can definitely feel this sensation and it is different than the faciculations I get, but I have also heard similar from people diagnosed with ALS. It is a feeling like your muscle is literally shaking inside or vibrating.
My biggest concern is that I went through a very scary "air hunger" time where I literally felt I could not get air in my lungs. I almost went to the ER on several occasions but it has since passed. So again, I got better not worse. This is a huge clue to not having ALS because usually (although I have read some exceptions from diagnosed people on this board) you do not see improvement with ALS.
I think the most difficult thing is finding a doctor that will work with you to actually not just rule out things, but to find out what the hell is wrong with you. The bottom line is that nobody cares about your own life as much as you and you definitely have to take control of your own body. It is frustrating because you know you are not crazy, but you feel like the doctor is actually questioning it, and rightfully so.
One other thing...I also did a test through a company that works directly with people called enterolab (www.enterolab.com). Although it is not a fun test, it did show I have a gluten/soy and milk (casien) allergy. I have completely changed my eating and it has not been a miracle cure but it has helped a little. I'd do almost anything to feel like the old me again.
I also take vitamins two times a day with omegas and I did a 5 day juice fast and liver detox to see if that would help me. I also have been using a microcurrent machine that has five programs on it, one for muscles, one for nerves, one for virus, one for liver and one for something I cannot remember. It is a little weird, but again, I'd try almost any alternative medicine to get back to feeling good right now. It definitely has an effect on the fascics (ramps them up during the treatment and slows them for a couple days after).
I hope some of this long winded email helps. It is probably much more than you wanted to know. I wish you the best of luck and hope that this will all be a thing of the past before you know it.