Wish me luck!

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Cindy,
I hope all goes well at the ALS clinic. You are in my prayers.

Good Luck,
Ellisa
 
Hello everyone. Well, it seems that when my GP said it was time for an opinion on ALS he chose the clinic that is connected with our local ALS association. I went to their website and found my clinic listed there and a link to this forum. So my GP did his homework well, that much we can tell.

There are other clinics and even two research centers within driving distance. Seems like one or two of the major teaching hospitals in Boston have ALS clinics and centers attached to them. So I think that if the repeat emg tests don't show anything then I will visit another clinic. But I still suspect that if and when anybody finds something I think it will be due to advanced symptoms, if they come.

Thanks for all your support. It takes a lot of fortitude to withstand the roller-coaster ride and that would be hard to do without support. For those of you who have been through this, I can see where people develop the strength to deal with the actual disease!

Hope you are all doing as well as possible on this winter weekend! regards, Cindy
 
Cindy --

I have a slightly different opinion from many here. If you have ALS there is no reason to be in a hurry to be diagnosed. Rilutek is the only FDA approved treatment and in tests it extended life (but not functionality) by only a few months. Additionally, it's expensive and very hard on your liver. I don't take it and neither do lots of other PALS (not that taking it is wrong--it's just far, far from a wonder drug and many believe it hurts more than it helps).

IMO, the only reason to be in a hurry for a diagnosis is if there is any chance you have a treatable illness. And that's where your doctor comes in. If I were you, I'd press that sad-sack young doc to tell you exactly what he thinks you have, complete with probabilities. Use that information to decide your next move. If he thinks MS is still anything more than a very distant possibility, get yourself evaluated at an MS center--there are a number of effective MS treatments out there. Ditto Lupus and MG. Once the treatable things have been ruled out then you have a decision to make. Do you want to know for sure if it's ALS? Only you can decide. But, practically speaking, there's no advantage to a diagnosis unless you need services you can't qualify for without one.

And, now that I'm thinking about it, this entire analysis assumes you have insurance that will pay for all these evaluations.

Good luck.
 
Hello Meg. You and I think exactly alike. Sadsack young doctor has definitely ruled out any other condition and is saying "wait and see" but I am in no hurry. Interestingly enough, we went through this with my Mom's Alzheimer’s. Some in the family wanted an immediate diagnosed so she could get a cure. As if. Others said, without a DX she should just shape up and try harder to remember things. As if that would help.

I said then what I now say about ALS. If it comes, it comes.

I may get another opinion if nothing shows up on the EMG in 2 weeks, but I started this thread feeling ambivalent about weather it is good to know for sure or better to put off the inevitable a little longer. Today I am willing to buy a little more time before sadsack delivers the axe! Thanks, Meg. Glad you expressed your opinion.
 
Emg

Hi Cindy,

I was wondering how your EMG went? I was thinking about you yesterday and I hope everything went well. Let us know if you want to share! Leslie
 
Well Im wondering too.Im going for EMG tommorow beacause my chick and face muscles are getting weak fery fast-I am scared to death.I will write how was it.
 
Good luck Anna. I hope you get good news. Leslie
 
Hey Cindy

Sorry this took so late to write back! I've been out of town. Praying for you and hope everything goes well. I'm still hoping for Good NEWS! Take Care. Mac
 
Good Luck CindyM.. We are all with you.. in our hearts and prayers..
 
Thank you everybody. We're still doing tests. I am beginning to think that I will be one of the people for whom it takes a little longer to DX. But I am in some sort of plateau and used to the symptoms I have so I'm taking advantage of the time to enjoy myself while I can. Your support si encouraging and verymuch appreciated! Thanks to all! Cindy
 
Cindy, you are always so supportive and kind towards everyone, often the first responder here. You must be a wonderful friend in real (non-cyber space) life as well. Thank you for being you. I am glad to hear you are not rapidly progressing and are embracing your life as you can right now.
 
Hope everything will be okay and it is not ALS. Thoughts are with you.

Hope
 
Hi Cindy

Hi Cindy:

I am sorry but I hadn't read your post and didn't know you were going for an EMG, you know my prayers will be with you, I appreciate your friendship and I admire your fortitude to face life.

Best wishes,

Paty
Baja California, Mexico
Husband's Caregiver DX 10/17/07
 
Thanks again everybody, both for the kind wishes and nice compliments.
BTW, if they want to test any of you for myasthenia gravis go ahead and rule it in or out but brace yourself. Not a fun test! Kind of wish I had the condition, though. Anything that is treatable is fine by me!

This weekend we are expecting 50 degree weather so I hope to take Sam the dog out for a walk. THere is a great park near one of our daughter's and if she's not working maybe she'll come along with her little dog. It will be like walking Mutt and Jeff!

Hope everybody also has a chance to get some rest and a little enjoyment this wekend...
Cindy
 
dear cindy my first diagnosed was MG but I knew I didnt have it because the symptoms are worse in the middle of the day and improve when you rest and the eyelids ussually droop But I was so happy to get a diagnosed that wasnt a death sentence I tried the Mestinon and it didnt work, I never saw a neuro for 2 years after that and then went to philly and had EMgs blood test and they were all normal and he told me it was neuro muscle disease but it wasnt advanced enough to say which one and he felt it couldnt be ALS because it was so slow I stay with him for two years and he still had no clue Then I went to John Hopkins and received a diagnosed in 5 minutes that was in 2005 in march 2 years ago now its in my arms and speech but I still walk and breathing is at 83% so ALS has many faces Pat
 
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