Ever Heard of Going to the Doc too Soon? - Page 5

donnainwash · 07-31-2009, 09:53 PM

This has been an interesting string of letters. I was simply going to reply that you can go to soon. I was also in a hurry since I have familial als. I was petty sure where I was headed. So I decided to wait and see what happened. Because my mother had bulbar, I was sure that things were happen very quickly , but here I am in my 4th year. I wished I hadn't stopped some of my activities quite so soon. I think I could have managed with a little help. I wish I had some of those clothes i gave away. Oh well. Have patiences and do your daily fun things.

whatsgoingon · 08-08-2009, 01:42 AM

Hi,

Over a year ago I got the dx BFS. I'm twitching 24/7 in both calves and widespread a couple every hour.
Now my twitching has increased and mainly in my both arm. I now get twitches every 30 seconds in each arm. Does this increase of twitching point to ALS? Can in still be 'bfs' if you twitch this much?

Justin

joelc · 08-08-2009, 12:29 PM

Yes, it can still be BFS. Twitching is not a sign of ALS.

chrismaya · 09-13-2009, 11:53 PM

I can tell you that when my mom FIRST went to a neuro, she had an MRI and was diagnosed with hardening of the arteries of the brain, typical with aging. At that time, she had some dementia, swallowing difficulty, and a slight stooped posture.

After I noticed her just getting worse, I requested she see ANOTHER neurologist, who found she had ALS.

I think there were about 2 1/2 mos. in between the first neuro and the second neuro.

And I'm sorry to say I think the first neuro was a quack. Surely when he had my mom stick out her tongue and try and puff up her cheeks, he should have known something was up.

DouginDet · 01-10-2010, 07:15 PM

Hi Suzan,

I'm Douglas I have Bulbar Palsy witch is just about the same as ALS, when I was first DX alot of my test did come back normal. They only thing that wouldn't leave was my horse voice and the tremors. It took about six months before I finally had a real DX, and I wish that it would have been ALS instead of the Bulbar Palsy. The one that I have takes you down alot faster. I'm sure that if your doctor had reason to think ALS in the begining there must be something there. Have you had an EMG, MRI, Ect. when I first started I only had a couple of discrepency's in a few nerves with the EMG and of course the swallowing and the horse voice, tremors. What I can tell you is to live it day by day expect the worst so that God Willing it will be something minor with you. I hope everything goes good for you please let me know how your doing.

With all concern and love, Doug.

DouginDet · 01-10-2010, 07:34 PM

Well folks like I said in my post for Suzani, most of my test came back normal except the EMG I had discrepencys in it, six months later there were more, don't worry about it for now Suzan. You could have something else going on. My swallowing and tremors were constant before my DX. I really didn't think anything of them. I said to myself well I probably have nodules on my vocal cords causing the horseness. LOL The tremors I put off becuase I worked out everyday so much so that my body fat was 5%. I just kept on living and still do thats why I think I'm still around. Take care everyone. GOD BLESS....

Jakv · 03-17-2010, 04:38 AM

Quote:

Originally Posted by DouginDet

Well folks like I said in my post for Suzani, most of my test came back normal except the EMG I had discrepencys in it, six months later there were more, don't worry about it for now Suzan. You could have something else going on. My swallowing and tremors were constant before my DX. I really didn't think anything of them. I said to myself well I probably have nodules on my vocal cords causing the horseness. LOL The tremors I put off becuase I worked out everyday so much so that my body fat was 5%. I just kept on living and still do thats why I think I'm still around. Take care everyone. GOD BLESS....

i just want to understand what you mean by "tremors"