Status
Not open for further replies.

quiltdeb

New member
Joined
Sep 8, 2014
Messages
3
Reason
Learn about ALS
Country
US
State
Delaware
City
Felton
I just wanted to know if anyone else started out with breathing difficulty and they found out on a sniff test that you had diaphragm envertration. ( This is what happened to me) But, you were not yet diagnosed. Seeing Pulmonary tomorrow for discussion of the two tests I had last month.
I really don't want ALS, I am being seen at U of Penn and all tests are negative for anything else. EMG is not till Oct. I shuffle when walking and my hands are weak and stiff. I can no longer raise my left arm above my head. Thanks for reading. I am becoming aware, that everything takes so much time to do. Life in slow motion.
Quiltdeb
 
it is impossible advice but just wait. You gain nothing by learning about a positive other than it is what it is. When ALS is taken off the table you'll feel like a million bucks. I wouldn't know specifically about either the million or off the table but that is what I suspect.

Seriously, if you kinda sit yourself down and gain control of the always there anxiety, keep a good mental outlook, and find a sense of humor, you will help others through your waiting. Always think about the shadow you cast for others. You will help others to be more positive and helpful instead of gloom and doom.
 
Considering the position I am in I find myself quite positive and still trying to work. I hesitated to post as I have seen others be judged for asking questions. Don't judge people by one post. Thank you. For your time.
 
Do you mean diaphragm denervation?
 
I just wanted to know if anyone else started out with breathing difficulty and they found out on a sniff test that you had diaphragm envertration. ( This is what happened to me) But, you were not yet diagnosed. Seeing Pulmonary tomorrow for discussion of the two tests I had last month.
I really don't want ALS, I am being seen at U of Penn and all tests are negative for anything else. EMG is not till Oct. I shuffle when walking and my hands are weak and stiff. I can no longer raise my left arm above my head. Thanks for reading. I am becoming aware, that everything takes so much time to do. Life in slow motion.
Quiltdeb

Welcome Deb. Sorry to see you have enventration. I had to look it up. Is this what you mean? "Eventration of the diaphragm is an abnormal elevation of the dome of diaphragm. It is a condition in which all or part of the diaphragm is largely composed of fibrous tissue with only a few or no interspersed muscle fibers. It can be complete or partial. Eventration of diaphragm is a congenital anomaly consisting of failure of muscular development."

What is the mechanism that prevents you from lifting your arm? Is it a painful lift?

--Mike
 
Welcome Deb. Sorry to see you have enventration. I had to look it up. Is this what you mean? "Eventration of the diaphragm is an abnormal elevation of the dome of diaphragm. It is a condition in which all or part of the diaphragm is largely composed of fibrous tissue with only a few or no interspersed muscle fibers. It can be complete or partial. Eventration of diaphragm is a congenital anomaly consisting of failure of muscular development."

What is the mechanism that prevents you from lifting your arm? Is it a painful lift?

--Mike
Mike
My envertration is not congenital but new. Seeing the dr tomorrow to discuss it. My muscle is stiff or tight in my shoulder and neck. Thank you for asking. I will reserve any more discussion on the forums if the diagnosis happens as we think it will. Take Care
 
Good luck tomorrow.

EDIT TO ADD: Perhaps I can offer some solace while you're waiting. A stiff or tight muscle, while bad, is a lot better than a paralyzed one.
 
Oh, I had never heard the word enventration, but then again, english is not my first language. I should have googled properly. I know the word in swedish.

But issues with the phrenic nerve can have many causes, neurologically Parsonage-Turner is one. From what I have learned, P-T MRI can initially be normal. And there are so many other causes before heading toward ALS.

Good luck on your visit.
 
Kosmo, just for clarification, I think the word is Eventration, not ENventration as the OP posted. abut, as she said, if diagnosis is as expected, this thread is probably done.
 
Status
Not open for further replies.
Back
Top