Old 01-15-2019, 11:26 AM #1 (permalink)
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Default Very scared abt Bulbar Onset, plz help

I would like to thank all of you in advance for reading my concerns. I am 39 yeasr old male. It all started in july last year. Initially i was suffering from burning pain in my arms and legs. I went to a dibatologists. But my sugar level came normal. Then I went to a neurologist. He adviced some blood tests. I was found deficient of vitamin B12 and Vitamin D. I took injections for Vitamin B12 and took meds for vitamin D. my burning pain gone thereafter (almost). In september I felt jaw quivering. Next day twitching started in my right leg as well. In next 15-20 days twitching started almost all over my body. Sometime here sometime there, including cheeks, lips, jaw. I went to that neurologist again. This time he did nerve conduction test (not EMG). He told me everything is fine and not to worry about als. I went to another neurologist for second openion and he also said same thing. About a month later after my symptoms did not dubside I went to third neurologist and even he assured me that everything is fine. But from last three weeks I am suffering from hyper salivation. although I dont drool but some time I aspirate on my saliva. Twitching is still present all over my body but hypersalivation making me crazy. I am fearing abt bulbar onset. some time i also feel like having difficulty in swallowing but i m still able to eat normal foods (veg and nonveg all). slurred speech is not present in my case. plz tell me does my symptom siund like bulbar onset. Does bulbar onset start with widedpread twitching? plz help me.
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Old 01-15-2019, 12:51 PM #2 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Your symptoms and symptom course do not suggest ALS.

You also saw 3 neurologists who told you it didnít look like ALS. You had at least one unremarkable EMG. You donít have ALS. The EMG wasnít done too early.

You need to lose around 70% of innervation before the muscles fail. So by the time a person with ALS has symptoms, he or she already has widespread denervation which would be picked up on the EMG.

Keep working with your doctors on your symptoms, but you can be glad you donít have ALS. Take care and goodbye.
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Old 01-15-2019, 01:32 PM #3 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Thnx for the reply. Emg test has not done yet on me. Docs said it not needed. That time I did not have hypersalivation and occasional aspiration issue. I m worried abt bulbul onset.
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Old 01-15-2019, 04:38 PM #4 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

You have it from 3 neurologists that you do not have ALS. Now you are asking random strangers with no medical background to diagnose you remotely over the internet. Most people twitch, it is so common as to be not indicative of anything. I hate to break it to you but you are healthy. Run with it!
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Old 01-15-2019, 07:09 PM #5 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Bikku,

KarenNWendyn is a Retired Rheumatologist (MD).

Re-read her reply.
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Old 01-16-2019, 07:38 AM #6 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Right now I am mainly concerned about excess saliva. I need to swallow it almost whole day. Althouth i dont drool yet. feel light pain in left side of chest every time i swallow. sometimes my lips open voluntiarly from air pressure of inside the mouth.
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Old 01-24-2019, 01:04 AM #7 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Drooling by itself is not a presentation symptom. ALS patient drool because they can't swallow anymore and can't flush down the saliva. Three specialists told u you're ok, please move on to something more gratifying than looking for a disease you don't have.
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Old 01-31-2019, 07:07 AM #8 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Now one more symptom has surfaced. when I clinch my right fist after relaxing it I get twitching in palm (where hand meets wrist). Sometimes twitching at this site happens involuntarily and always happens when i use that hand. plz guide.
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Old 01-31-2019, 10:47 AM #9 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

You saw 3 neurologists who told you it didnít look like ALS. You had at least one unremarkable EMG. You donít have ALS.

You are officially cleared of ALS.

You are free to go.

Asking us further questions and describing additional symptoms does nothing to change our minds. It only tells us that you are not letting go of your ALS fixation. That is not healthy for you and, quite honestly, it wastes our time.

If you have additional questions or concerns, please address them with your personal physicians.
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Old 01-31-2019, 12:38 PM #10 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Sir no emg has ever me done on me. Thay was ncv test.
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Old 01-31-2019, 12:43 PM #11 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Bikku,

NCV or EMG or whatever, you do not evidence ALS, period. You really, really need to let this fixation go; seriously. Karen (she, not he) gave very good advice. Please take it and go enjoy your healthy life. A life free of ALS that anyone on this forum would give anything to have.

Goodbye.
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Old 02-04-2019, 10:14 AM #12 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Thank you all of you for replies. I am scheduling appointment with another Neurologist within a week. Will insist for emg. My excessive saliva issue has not resolved. feeling some bone pain in right arm as well along with body wide twitching. Will let you know what doctor says.
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Old 02-13-2019, 02:41 AM #13 (permalink)
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Default Re: Very scared abt Bulbar Onset, plz help

Today I visited another neurologist. Explained all my symptoms to him. Bodywide twitching, Excess saliva, Twitching in right palm whenever i use that. A dent in right thigh and so on. He conducted some strength tests, like waling on toe and heel. Jumping on one leg. Then he did some reflex tests. Right knee show some hyperreflexia (I thinkl). I requested him for EMG test but He denied. Wrore three words on prescription 1. Anxiety 2. Hypochondriac and 3. Bening Faciculation syndrome.
Now I think I need to move on in life. If something bad happens will see then. Thnx all of you for ur replies.
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Old 02-24-2019, 09:51 AM #14 (permalink)
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Default EMG update

As I earlier said, I am suffering from bodywide twitching for 5 months. From last one month I feel aspiration while sipping tea of coffee (occasonaly though). Need to clear throat a lot after eating. Had a spell of excessive saliva for few days, but It seems to be under control now. I don't slur and doctor said my tounge does not faciculate.
Yesterday I went for EMG+NCV test. Doctor conducted EMG on 6 muscles.On both arm (around bicep) and hand (between thumb and index). On right thigh and right calf. According to Doctor EMG report is Normal. He did not conducted EMG on any bulbar region. As far as NCV test is concerned technician said amplitude of right ulnar region is on lower side, but doctor said its not significant. Should I press for EMG of bulbar area or Should i relax now? plz suggest.
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Old 02-24-2019, 04:08 PM #15 (permalink)
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Default Re: EMG update

You can relax. ALS shows up elsewhere as well if you have a bulbar onset.

With your primary care physician, you can focus on alleviating your symptoms and managing your anxiety about them. Improvements down to nutrition can take a while to kick in, so keep up a healthy lifestyle and address your feelings, and things should get better.

Best,
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