Emg Question

[cstans]

Hi agian everyone,
I was very happy when i heard that my emg was clean, but a few people in here have said that they have had clean emgs so i am a little worried agin. My emg only lasted about 5 minutes and it was only a couple of muscles on my right side. What are the chances that they have missed something 4 months into twiching? Should i seek another opiton? I have A ALS clinic about 10 minutes away from me at duke, should i go? Advice would be great. Thanks
Ashley

My husband began getting twitches in his upper body last summer. We had no idea what was going on. He went to his his Doc in September and was referred to a Neuroligist in October. Before we could get back to see the Neuro to get test results of a MRI my husband had a heart attack. We were told in the hospital that they suspected my huband had ALS and that was the middle of October 06. His symptons were twiching in his arms, slight slurred speech at times and weekness in this hands. He had a EMG at the end of that month and no diagnosis then of ALS. He had another in March 07 and finally got the Diagnosis. I think that the disease doesn't progress quickly enough in the early stages to let the doctors give the diagnois even though they suspect ALS. I do know the EMG's that my husband had lasted over an hour each so I would be suspect about a 5 minute test. My husband has progessed rapidly in my view just since we got the diagnosis less than 3 months ago. I don't see any slow down and wonder if he will be able to go on a cruise that we have scheduled the end of July. It's hard to live with the disease not knowing what to expect and what he can and can't do in the near future. I don't think the diagnois of this disease happens very quickly which just increases our anxietly level knowing the severity of this horrid disease. Be patient if you can and pray.

 

[CindyM]

Hi cstans, welcome to the forum. I'm no expert but in my heart of hearts I want you and Hubby to take that cruise. If he needs courage, read some of Quadbliss's posts about traveling with wheelchairs, pipab machine, and the whole 9 yards. If by some miracle he gets better (let's pray that he does) you guys can celebrate with another trip next year. But there is no time like the present! regards, Cindy

 

[Jamiet]

cstans,

go on that cruise if you can. time is precious, good times, although hard to see now, will be life long memories.

I'm sorry for what's happened to you and your hubby. I'm 32 and a whole slough of issues and go to the als clinic on mondy, probably to be told its als or probable als. i've got young kids, as a matter of fact, my little girl in the avatar picture just made one year last saturday. i'm hopoing daddy get's to walk her down the isle.

enjoy your time, it sounds as if you are soul mates.

please come back, stay with us, we appreciate the support and give the same in return.

regards,

jamie

 

[Jamiet]

i duplicated the answer, see above, can't delete this post now

 

[Lorie]

I Agree With CSTANS

Don't forget, my Brother had symptoms for seven years before suspecting ALS. Suspected three years ago, Dia. two years ago. Total of 10. He is not doing very well today. My heart aches for him.

No Doctor can dia. until the symptoms get intense enough.


I would not stop at the first doctor, been there and done that! Still doing it, myself!


Lorie

 

[vmd]

Lorie:

Sorry to hear abut your brother. Fortunately, for him he has a very caring sister.

What types of symptoms did he have 7 and 3 years ago? When I think back, I probably have had some form of neurological symptoms for years as well, perhaps 3 to 5 years.

This is why the diagnosis of ALS is so frustrating. We have to wait until the symptoms become apparent and that means many years of worry. Of course, I would think that the majority of those with ALS can be diagnosed relatively quickly.

Does anybody here, both the PALS and those waiting for a diagnosis, think it would be a good idea to conduct a poll or survey to identify the variety of symptoms, when they occurred, how long they have had them, etc.? Perhaps, this has been done already. Such a poll would give us a good picture of the variation in presenting symptoms, types of symptoms, and timelines.

I could probably develop a list of symptoms from an ALS site and then we could just check off the symptoms.

 

[Lorie]

To VMD

My Brother hade Muscle Cramps and Twitching (faciculations) for the first 7 years. The Docs. had no answers. They put him on Quinnine and Muscle relaxants. He did not have any muscle weakness. He stared having weakness in his arms in 2004. They did the EMG and NCV test and suspected ALS. It wasn't until he stared having atrophy in his arms when they were able to Dia. He has no use of his arms or hands, his neck is getting weaker. Now he says that his legs are getting weaker.

VMD (don't know your name)
Timothy has gone through a lot. We moved him from WV to AL in Jan. He had to leave his wife that has CP. She has her parents there. He was so happy there. But, the main thing is. He wasn't getting the care he needed. His Doc. called me himself and told me that either Timothy come to AL. Or he would be put in a state facility. That horrified me. I was just waiting and planning on the phone call from Timothy and His wife, for Timothy to come home to AL. The call came. I grieved for two years while he was there. But I could not demand him to come home.(although thats what I wanted). I didn't want him to blame me later. People who are already around their families that are willing to help are very lucky. Timothy basically had to give up his life. But, under the circumstances. He knows that he is better off. I make sure he has everthing he needs.

I hope your situation comes out different. Please keep me updated. I care about everybody! I am selfless (not selfish). Keep tuned on the General Discussion About ALS Thread. More to come. I am posting about my self.

Need anymore info. just ask. I am full of it.
Lorie