Pulmonary Function Tests

[Al]

I really am surprised that they don't order these tests on more people. Lucky for me the ALS Clinic isn't far from me and the sleep clinic isn't either and my Pulmonologist is a pretty sharp guy. He noticed the way I was sitting at the clinic and said " you have trouble breathing lying down don't you?' I asked how he knew and he said the way I was sitting forward with hands on knees is a classic symptom.
AL.

 

[CindyM]

I found that the folks at the clinic are pretty sharp, too. For the record, they ordered a sleep study on me right off but that could be due to my history of apnea. Regarding them knowing what to look for, I told my GP that I was drooling a lot at night and he recommmended antacids. I never even told the doctor at the clinic. He saw me wipe the corner of my mouth and became very concerned. (I'm still able to pass muster with the speech test, though, so I'm good to go for now.) Cindy

 

[lisa1215]

Hi annmarie

I am really trying to be positive and hope it is something else..My Mom had called me last night just crying and very upset because she had looked into the MVV result and found something that indicated if this result is dimished, it can be indicative of neuromuscular issues- so she was very worried that this was bad news..I don't know- 78% isn't that bad- it's like a C+! I haven't really been able to find anything about it- I just don't want to surf the web anymore. It just adds to the stress..I am sure they will lwt me know this week sometime if I need further testing..

I haven't changed much except I noticed a twitch in my stomach now, of all places..My boys seem heavier and heavier every time I pick them up..After the EMG showed the denervation in my back- I have had a backache too..

My next neuro appt is on June 6th..I am pretty sure he will be referring me the local ALS clinic for an eval..This was discussed at the last appt so we'll see how it goes.. If I am referred to another Dr- will they be repeating the EMG? That test really sucks btw..

All of a sudden I am just super scared, and I just have the worst feeling that they are not going to find something else that could be causing it..I went from happy on Friday-to the pits today. It was really hard to see how this effects family/friends, and I really don't know anything for sure yet. Sorry for the little pity party..

Again- thank you all for the support, it is really helpful..You are all in my thoughts and prayers as well.

Lisa

 

[hboyajian]

Lisa, it is absolutely O.K. to say how you feel, honestly and right out loud. This is a really scary thing, and it is entirely understandable that you would have complex emotions about it. It is much better to tell people here and in your life how you really are than to put on a falsely happy face. You will be closer to your loved ones this way than if you don't share the fear, grief...and whatever else...and it is this closeness and love that is the most important thing. This is not to say you won't also smile and laugh with your children too.
Anyway, I don't hear any 'pity party' I just hear an honest and loving person dealing with an incredibly difficult illness with thoughtfulness and honesty.

 

[Frizzel]

Frizzel's thoughts in response to you, Annmarie

May I suggest to you as I am learning myself how to experience life in other ways being realistic about what is happening in my body and yet learning how to live life to the fullest for each day I am alive. I no longer can drive so now what? another adjustment...yes it's cut me back AND my root system is still strong enough to grow again. What I'm still seeking. Keep yourself open to find out what's wrong physically should you need to and keep believing that you still have a lot to offer...Visit Mike's website if you haven't before. His art and writings inspired me to rise up hope for my own future.

 

[CindyM]

Hello Lisa, I hope today goes a little better for you. The roller-coaste ride can be quite draining, I know! Cindy