asking for help and advice

[northman]

Hi all, I was waiting on a ct scan but that came back clean. Now I have to wait for 2 months until I can get in for the EMG.
Can anyone shed some light on something for me.
My voice started to slur off an on about 10 months ago, then by January it was basically slurring and nasaly all the time. I was informed I may have ALS at that time. By spring it was worse. All this is localized to the tongue. I have no issues swallowing that I can tell. Some issues drinking from a straw sometimes. Now the end of my tongue is numb.
I get zero help from my doctor when I talk, they just keep saying it may be ALS.
I am now worried all the time..so have random twitches in my arms(biceps, triceps) and shoulders, back, nothing in my legs. I do not really notice any weakness, I still bike and hike. But seeing as I get nothing from anyone I have turned to the people here.
Lately my voice seems to be somewhat better... still nasaly but I can talk faster and for longer before the one side of the tongue gets tired. It seems that I am much easier to understand, or so people tell me.

Any help, advice or direction would be appreciated.
God Bless and thanks

 

[ottawa girl]

Have you had an EMG in the recent past? If so, what are the results?

Why do you have to wait two months for an EMG? That seems excessive given ALS has been mentioned to you. Which doctor blows you off - your GP or neuro? If GP, you may want to get a new one if you can. Some fresh eyes on your entire medical history probably couldn't hurt.

I'm limb onset, ( so hiking & biking are out of the question). Am just recently experiencing some speech issues - these don't come and go, however they do become more " pronounced" ( pun intended) as the day wears on and I become fatigued. So, with yours coming and going ... In my opinion, it could be something else you're battling.

 

[northman]

Thanks so much.. Both the neuro and the GP just say it may be. Then they schedule the appointment for the EMG. The neuro did shove some needles in my arms and hands and asked me to move and lift... he said very strong for that and then he did under my jaw into the tongue and there was very little sound coming from that muscle. My speech is usually better in the morning as well and will get worse as I talk or after I eat as I use the tongue to move the food around. I also notice that I can feel the muscle of the tongue on the left side tighten up the more I use it. If I press on it or massage it, there will be an improvement for a little bit. But resting it will always improve it. It seems the more I am worried about speaking the worse it gets... like I am tense so it comes out very nasaly. Otherwise I really do not feel much different..other than freaked out and worried all the time. like I say lately the end of my tongue is numb..still feeling but numb and a little on the left bottom of my lip.

thank you so much... I have had more information from you now than all I have had in the last 10 months from these guys.
As far as the EMG I do not know why it takes so long in Canada. I will push for an ealier date.
thanks again

 

[ottawa girl]

Northman,

I'm in Ottawa. Waited two days for EMG. Sounds to me that you've had an EMG and they want you to wait for the next one. There is an ALS clinic in Vancouver. If I were you, I'd call neuro or GP to confirm you indeed have a " probable ALS" diagnosis. If that's the case, I would request a referral to the clinic in order to get a second opinion. If you are told it's not a "probable" diagnosis, you may have to wait it out and have regular follow ups with your current neuro. until he/she can figure out what's going on with you. Some of us have to wait a very long time before a firm determination can be made. It's no fun, to be sure but try to relax and enjoy life as best you can. If your anxiety and worrying escalate and are interfering with your sleep, family and work life, you could ask your GP to prescribe some thing to get you over this hump. Hang in there!

 

[northman]

thanks for the advice... I went back to my gp and he called the neuro... he said he just did 4 sites and all were fine except the tongue was subdued? So he scheduled me for a emg... after mentioning I spoke with someone from Ottawa that got in in a few days my doctor said he would call and try to get it moved up. If not I am due October 11

thanks so much for your help.. you are my hero... I have been stewing in my own juice now for 10 months since they said maybe als. luckily it got worse about 4 months ago and since then no real change except maybe I am getting better at speaking with my tongue.