An update and an adios

[Luke]

Hey folks,

I'll share the latest update on my health and then I think it's time to say goodbye to you all for now. I found this forum because of my anxiety over symptoms, and see so many carbon copies of my first thread here, in the form of other freaked-out Google surfers. I don't think I belong on this community nor should be taking up your time, but for those who were following my updates, here's the latest.

My latest pulm. test showed weakness in the diaphram and intercostal muscles. The numbers were 16% lower than expected sitting up, 20% lower than expected while lying down. These numbers were not the FVC, which was 95%, so I don't know which data was used to decide there was muscle weakness, but that's what I've just been told. Might have been the peak flow measurements. My last modified berrium swallow shoed pooling in the vallecula and some delay in epiglottal response, but these findings as well as the pulm findings I just described have not changed from the same two tests done back in March, which is a great thing. I explained that my most distressing problem of all is that I cannot sleep lying down so have been sleeping propped up on my sofa for the last two months. My neuro-muscular specialist is sending me back to the pulm clinic and she's suggesting bipap to bring me night time relief. I'll gladly try anything that will help me rest soundly! That's all for now. As great as you all are, fingers crossed I won't need to return to this board. If anyone found my presence helpful and wants me to stop by on occasion, let me know. Otherwise I think it's best to stay out of everyone's hair.


Thanks again,
Luke

 

[notme]

Lukle, we like people to come and let us know how they are--it sometimes helps the other spastic overwrought people to read 'good news' posts by others.

FCV is the number you'd need to be worried about. For instance, i breathe way, way below what is 'expected' for my age, etc. I'm at 74% below where I should be. Very low FCV in comparison to a normal healthy person, too--as I have muscle weakness and breathing issues. I have O2 and was also put on a c-pap, which changed to a bi-pap.

If you haven't had the sleep study--you should. Sorry--didn't go read all your other posts again. If I remember correctly your O2sats went very low. This should be addressed in some manner. Hopefully, they will find a non-fatal cause for your issues. Remember, it can only be ALS when it can't be anything else.

So--post again after your next follow up and keep us posted if you'd like to.

 

[laurel]

Thanks for the update Luke. Still sounds a bit murky eh? Best of luck and sure pop back in and keep us in the loop.
Laurel

 

[HelenL]

Hi Luke, hope they figure what its all about, and the good news is you can go out and advocate for those who are still here! Keep us posted!

 

[momap53]

Good luck! Hope the Bipap helps you get a good rest at night. There are some good threads in the archives about mask issues.

 

[Toto's Dorothy]

Luke,

I'm with notme and laurel. Still no definitive answers, please let us know.

 

[notgivnup]

Luke I agree, keep in touch and let us know how things are going for you. Praying for the best for you. And hoping the bipap helps with the sleep issue.

 

[Luke]

You all are too kind. You got a deal - I'll keep you posted. Thanks so very much.

 

[Toto's Dorothy]

I like this kind of arm twisting. One or 2 posts and they agree with us. We need to find the solution for our opposite problem.

 

[kiwisally]

nuke'um.......