... Two neurologists have diagnosed me with bulbar onset ALS. Am heading to Mayo Clinic soon for one more opinion. Symptoms started very slowly January 2013. ... (1 replies)
... Does anyone have any experience with respiratory onset als? ... (0 replies)
... I'm definitely scared now about bulbar onset ALS and it is reeking havoc on my mind and probably just making the situation worse. ... (2 replies)
... people's stories I went into panic mode. By the way, I'm only 26 years old and I have always been healthy up to this point. Also, I read somewhere that bulbar onset symptoms almost ALWAYS start out with speech difficulties first. I don't know if I mentioned in the previous post but this all came on sudden as well. ... (2 replies)
... I'm in the same boat that you are - my mother was diagnosed with late stage bulbar onset ALS on 3-16-2012. Hospice started on 3-19-12. 24/7 in home care began 1 month ago. My mother does not want any life saving measures taken, hence no feeding tube, oxygen, etc. Her DNR document is on the fridge. Mother works to get down what she is able to "eat" at this point (from a... (5 replies)
... I am 69 and just diagnosed with Bulbar als.... I am and so is my whole family reserching diet concerns, as well as vitamins, minerals and ways to detoxify the body. The doctors are of no help. thanks god for friends andmy son (5 replies)
... Breathing problems occur with bulbar onset als. Does she also have trouble swallowing or changes in her speech? ... (1 replies)
... can anyone tell me the typical prognosis for a person diagnosed with bulbar onset als? ... (5 replies)
... have a shooting pain that comes out of the blue many times a day. On top of all of this, my neck has been hurting really bad, and I am hoping that it is not an ALS symptom because I have read that people with ALS can find it difficult to hold their head up. I am really scared to death. ... (6 replies)
... That's what I was wondering. Is slurred speech usually the 1st sign of bulbar onset ALS? ... (6 replies)
... I just turned 49 in December, and have been having strange symptoms in my tongue and throat, plus on/off labored breathing over the past 2 months. Can someone help me with some of the initial symptoms of bulbar-onset ALS?
If the breathing is effected first, is it an on/off progression, that is, once the labored breathing begins, will it stay labored due to the muscle... (6 replies)
... Bulbar then progresses to other parts of body just like limb onset can do. ... (4 replies)
... I am sorry to hear of this new diagnoses. My father passsed away last year from Limb onset ALS. He lived with ALS for 22 months after his diagnoses. He had symptoms for much longer though. Like your father, his symptoms started in his legs and also his feet. ... (3 replies)
... e symptoms usually happen in people diganosed with the bulbar onset. Sometimes you will get those symptoms "later" in the disease if you were diagnosed with Linb onset ALS. My father just recently passed away from limb onset ALS. He also was taking lipitor and had the same symptoms you describe. ... (2 replies)
... Hello Greet,
Sorry to hear about your symptoms. I am well versed in ALS, but not as well at Bulbar. Bulbar is the least common of a very rare disease, especially if no family history is involved.
Please report back after your neurologist visit. Hoping to hear some good results.
James (1 replies)
... Bulbar onset is the rarest form of a very rare disease. Bulbar onset in males is even more rare. ... (13 replies)
... I'm still really concerned about als. I still am having to spit out salivia after I drink. I am mostly concerned about bulbar due to the trouble I'm having all liquids and I know that is a major sign of bulbar. I also feel my toes continue to twitch even though my wife says it is just tingling. Is there a way to differentiate between bulbar onset and just gerd/post nasal... (13 replies)
... Pray for you...I am suffering from twitching all over body for the last 5 months and going to test an emg next week:( (1 replies)
... I am female, 71, reasonably healthy for my age. My 3rd and 4th neurologists have diagnosed me with probable bulbar onset ALS. Last neurologist is a specialist in ALS diagnosis and treatment in Lexington KY. ... (0 replies)
... my voice is changing. I sound hoarse all the time and it's not as loud as it used to be. That is one symptom I am worried about since it can be a sign of bulbar onset ALS. ... (10 replies)