Old 11-15-2017, 07:08 PM #16 (permalink)
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Default Re: Humbly asking for experiential input

Your symptoms do not sound like ALS. You have had a clean EMG. Follow up with your doc but your anxiety is definitely getting the best of you. I suggest you log off this site, follow Laurie’s and Kim’s advice and follow up with your ent, but you really don’t describe ALS. Best wishes.
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Old 11-20-2017, 10:29 AM #17 (permalink)
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Default Re: Humbly asking for experiential input

I can only post on this one thread but wanted to provide a link w good info for the hopeful. It doesnít include NurOwn or USF stuff but here it is

https://labiotech.eu/als-cure-biotech-review/

My own symptoms and anxiety continue although I did look into b12 which I would suggest trying some (as long as you donít take folate with it unless diagnosed w anemia by doctor)
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Old 11-20-2017, 06:56 PM #18 (permalink)
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Default Re: Humbly asking for experiential input

Also wanted to mention that trazadone has been shown to slow down ftd...for those who want to know...may consider early treatment

Consider discussing this with your provider
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Old 11-21-2017, 08:06 AM #19 (permalink)
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Default Re: Humbly asking for experiential input

for any ALS testing experts. My friend does ultrasounds as a tech. Does anyone know what you expect to see in muscles with ALS under ultrasound? There is some literature about frequency of fasciculations. Any input would be appreciated thank you.
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Old 11-21-2017, 10:30 AM #20 (permalink)
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Default Re: Humbly asking for experiential input

You really are getting ahead of yourself. Your docs are not concerned about ALS and you had a negative EMG. Treat the reflux and your anxiety and follow-up with your docs, but at this point your time would be better spent enjoying your life and not on the internet researching a disease that you don't have.
Best wishes,
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Old 11-21-2017, 12:54 PM #21 (permalink)
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Default Re: Humbly asking for experiential input

Tracy thank you...

I really am losing it. But my speech is getting worse. I read about many people on here started with a lisp and some swallowing issues and I cannot stop thinking about my talking to see if it is real--since I am having both. My gag reflex is decreased which is another bad sign. While an occasional lisp or speech issue might be anxiety, I can't imagine the exacerbation that I have is...although I would take it in a sec. i have already started lexapro but that may take some time before it kicks in. Thank God I have a great wife, but I feel I am a burden to her and my entire family with this stuff.

I am in the process of scheduling an appt with johns hopkins als clinic as I not only need to rule this out, but I need to see what else can cause my leg symptoms. Also I read that tongue emg's are notoriously insensitive.
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Old 11-21-2017, 06:20 PM #22 (permalink)
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Default Re: Humbly asking for experiential input

This was not the ALS type of FTD, and it was a mouse study. Not to say trazodone may not be helpful, but the study is not really on point, and since it's a sedating antidepressant that can be cardiotoxic at higher doses, not something to just jump into. Today, it is most often used in low doses for sleep.

As to your own situation, if people aren't commenting on your speech deficits, you probably don't have any significant ones, in reality.
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Old 11-21-2017, 07:46 PM #23 (permalink)
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Default Re: Humbly asking for experiential input

You can report back after you've been to Johns Hopkins.

Wishing you and your family a Happy Thanksgiving.
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Old 11-27-2017, 07:28 PM #24 (permalink)
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Default Re: Humbly asking for experiential input

If one wanted to donate money for als research, where is the best place where most funds would go to actual research instead of bureaucracy?
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Old 11-28-2017, 01:22 AM #25 (permalink)
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Default Re: Humbly asking for experiential input

A university or medical center with an active program, with the check or payment earmarked for that investigator, project or group.

Note -- others here may disagree, so this is my opinion only. But, when I worked in academic research, discretionary funds were used for equipment, research staff salary support, travel to present findings -- not the self-perpetuating oligarchy I see in ALS. And that was in a "richer" department than most are today.
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Old 12-06-2017, 10:28 AM #26 (permalink)
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Default Re: Humbly asking for experiential input

My last post didn't post.

I am still awaiting second opinion at hopkins.

Please I implore any bulbar individuals to answer me this questiong

My speech is the same to somewhat worse. I speak a lot at work, and while i have been testing my tongue, I definitely am slurring speech. L and R sounds are the worst and by late day it is harder. I am very anxious and have been taking lexapro. this hasn't helped the speech. I test myself with reading out loud and it seems better than when I actually speak, although it is still problematic occasionally. My tongue aches as if it is working and compensating for trying to get the words out correctly (or alternvatively may just be fatigued from my testing of my tongue which I have refrained from the last couple days to see if it improved and it hasn't).

For those who had slurred speech, did your tongue fatigue with talking and you notice any aching with speaking?
Were R and L and S the harders initial letters to say?

please repond.
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Old 12-06-2017, 11:02 AM #27 (permalink)
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Default Re: Humbly asking for experiential input

NOPE!
Happy, no more.
You've been proven to not have ALS, and you've been told many times by the best, most experienced minds here that you do not have ALS.
That's it. You don't belong here.
You are taking up time and attention and resources of terminal ill people. Being here just feeds your anxiety.
We're not doctors, but we know ALS very well, so we can advice on ALS, but it would be irresponsible for us to pretend we have any expertise in anything else.
SEE YOUR DOC. Don't post here anymore.
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