Status
Not open for further replies.

roodog

New member
Joined
May 15, 2013
Messages
3
Reason
Learn about ALS
Country
US
State
NH
City
Peterborough
after debating whether to post considering the "sticky's" about hypercondria etc. I am doing this more for my family than for myself...I am in the wait and see/worry/holding pattern phase....

I am a 45yo male who noticed speech was slurring 5 months ago...bit of drool, chewing became "tricky", smiling and smirking for no good reason sometimes (but no uncontrollable laughing and crying)..

went thru my GP (not a stroke) to Nuerologist, who tested blood, MRI and EMG....all clear..his advice was come back in 2 months (not good enough for my wife or Primary doctor)...

2nd opinion at Mass General, second EMG was all clear and now sceduled for a 2nd MRI, but again, lets wait 2 months (no rush?)

no (major) twitching/muscle degeneration except a (hopefully) unrelated atrophy from a hip resurfacing several years before..

find myself rooting for some fairly nasty conditions -vs- the possible alternative and would appreciate someone yelling at me to get off this forum, as it is only for the seriously ill..

my wife and now I have been researching too much obviously (but she is worried)

any reality checks would be appeciated
 
I say wait the two months and simply endeavour to continue on with normal activities. If problems become acute, you'll know and you can give your GP a call. Otherwise, assuming there is something progressively chronic in progress, time is your and your doctor's friend as it may help them isolate whatever might be happening.
 
Hi there,sorry your here with this problem.
If emg was done on bulbar area and it was ok then thats a very good thing.
We can't diagnose as were not doctors but from knowledge and my own experience its possible it could due to umn desease.
With pls(bulbar onset) or pseudo bulbar palsy an emg would be clean.
I am pls limb onset (14yrs) it has spread to bulbar with .....slurred speech,problems chewing and swallowing.
It can take 3-5yrs for a comfirmed diagnosis as they need to rule out lmn development.
Try not to worry too much at this point.
 
Hey roodog

You did good getting a second opinion. Hard to wait though...no kidding. Well, on the other hand, if it is ALS, knowing won't really change anything because not much can be done (not very helpful...sorry about that).

Well, if it were me, I would try and stay really really really busy and do the things I love to do. I would also try to stay clear of "what if" and keep my fears and emotions from getting the best of me.

Sorry you are going through all of this! Good luck to you...and yes, you are right, too much internet research is not a very good thing for you right now :-D
 
I agree with Fitzroy, all you can do at this point is wait and see. These problems and diseases take a while to figure out. I hope for your sake it is nothing major. Try to relax and enjoy. Self diagnosing, self testing and internet searches are not good except to cause fear and anxiety. Keep us updated if something changes. Cheers !
 
wow, that was quick....thanks so much to all you lovely, caring people

great advice all around....my wife has me 6ft under already, so I'll tell her to lay off the bucket list for now...and stay the hell off the internets (sic)

I will curtail my Googling as well (after researching olly's suggestions naturally)...if nothing terminal on olly's list, I may distract my wife it (what should I been rooting for, olly?)

(obviously I am trying to keep my post upbeat, to mask any apprehension...no doubt all you caring folk see right thru that)

I read a lot of the als forum posts before deciding to ask this question and frankly I find all of you people remarkable and more courageous than I hope I ever have to be....if I were a religous man I may say "bless you".....but I'm not (yet), so I just say thank you
 
Rooting?
Please remember we are not doctors......primary lateral sclerosis/pseudo bulbar palsy are only possible suggestions that fit with your symptoms and test results.......These are not classed as terminal.
I am a christian.........Bless you roodog.
 
Last edited:
Of course, you realise rooting has a completely different connotation in Australia. Maybe that's something to take up with your wife! :shock: :oops:
 
OOOOOOOHHHHHHH! I SAY:shock:
 
Good way to keep your mind distracted
 
Who did you see at MGH? Their ALS specialists are awesome. What exactly did they tell you? Waiting is so difficult but if they did not give you a probable ALS diagnosis have hope!
 
Dr Atassi. I have a 2nd MRI scheduled for early next month to see if any changes? I inferred with the 2nd EMG coming back negative, that ALS was less likely than more. It is too early (and too vague) for any "diagnosis".
 
Status
Not open for further replies.
Back
Top