Kerbear
Active member
- Joined
- Sep 11, 2015
- Messages
- 35
- Reason
- Learn about ALS
- Country
- Uni
- State
- Georgia
- City
- jackson
All of you are very smart and I am not sure how I should approach my neuromuscular doctor. We are very disappointed in the clinic we are using. The first major problem happened in November after a clinic visit in October there was talk of a muscle biopsy the nurse called me and asked me to come in for a 4th emg to help guide the surgeon, we got there in a gown and soaking hands and feet in not water when the attending that day came in and said sorry but we don't need a new emg as if I had asked for another.. She apologized that noone called us, we were irritated it is a 1.5 hour drive but mistakes happen.
My next clinic visit was in January we knew there were significant changes such as speech swallowing breathing and atiffneas/spasticity. We started with my drs NP and she did the exam and said she needed to speak to a couple people and would be back she came back with a Dr I have never met but later found out he is over the als clinic. He examined me had her do a spirometry test lungs are good, the other that tests diaphragm was low 10 14 9, so he told them to order modified barium swallow a head MRI as I hadn't had one since 2012, and to be back in one month. He told her to send my file to his office and looked us in the eye and said we will get you a confirmed diagnosis. He also looked at my 3 emgs.
Now we have been told mnd but pls as I do not have significant muscle wasting, also that it is pls after 3-5 yrmears of not being als. Confusing but I think we understand.
I also understand that only my dr. Should report to us any diagnosis or information that is important so they had us come back Friday .. Guess who was not in the building or available... My dr. So the NP apologized and said she would call Monday or Tuesday ...
As a sad note my barium swallow showed deep penetration with aspiration and I am now thickening my liquids honey thickness. I know there is zero cure or treatment and that I am on baclofen, but I have been told that speech occupational and physical therapy however only my Dr can order it. Is it time to ask for a new Dr or is this typical??? From what I read many have the same issues?
My next clinic visit was in January we knew there were significant changes such as speech swallowing breathing and atiffneas/spasticity. We started with my drs NP and she did the exam and said she needed to speak to a couple people and would be back she came back with a Dr I have never met but later found out he is over the als clinic. He examined me had her do a spirometry test lungs are good, the other that tests diaphragm was low 10 14 9, so he told them to order modified barium swallow a head MRI as I hadn't had one since 2012, and to be back in one month. He told her to send my file to his office and looked us in the eye and said we will get you a confirmed diagnosis. He also looked at my 3 emgs.
Now we have been told mnd but pls as I do not have significant muscle wasting, also that it is pls after 3-5 yrmears of not being als. Confusing but I think we understand.
I also understand that only my dr. Should report to us any diagnosis or information that is important so they had us come back Friday .. Guess who was not in the building or available... My dr. So the NP apologized and said she would call Monday or Tuesday ...
As a sad note my barium swallow showed deep penetration with aspiration and I am now thickening my liquids honey thickness. I know there is zero cure or treatment and that I am on baclofen, but I have been told that speech occupational and physical therapy however only my Dr can order it. Is it time to ask for a new Dr or is this typical??? From what I read many have the same issues?