My NeuroMuscular Dr Visit - OT
teddybear200 posted:
Some of you asked me to give an update on my visit to the new Dr in Madison. I do like him. Both him and his Associate seem to be very knowledgeable in this field.
It took 2 hrs to get there - road closures of course - only 1hr and 15 mins. to get home.
It was a good visit but with many challenges ahead. Here's what I do know: BP too low 97/65, heart rate at rest 98 too high, reflexes almost none. My sweat test showed I only sweat 20% a definite autonomic dysfunction - they can not improve that.
I have what he calls Autonomic Phrenic Nerve Neuropathy (bilateral) - cause unknown. It is affecting my diaphragm, heart, lungs, esophagus, bladder and my small intestines. He said there is fear it is also affecting my Pulmonary Artery. It is progressive at this time - he said since my diabetes was Prednisone induced it did not cause the neuropathy. He further stated that if my diabetes had been over 300 on a daily basis that would account for the neuropathy. At diagnosis my A1C was 6.1 and never over 6.2 in the past 3 yrs..
I will need to go back on the 8th of Oct for another EMG with needle placement into the diaphragm to see how damaged it is. I will know then what if anything he can do for me. Right now he says he has never seen it this bad in someone who has not had injury to the phrenic nerves or a cause. Patients he has dealt with only have one nerve affected - both of mine are.
In the mean time I am not to exercise - keep sugars in the tight control they are - keep taking my water pills I currently am gaining up to 10 lbs of fluid a day even being on a sodium restricted diet of 800mgs a day - I am to weigh myself AM and PM and take my water pills accordingly - for my heart - I am to try to stay under 150 lbs today I was 145 and take it easy until the 8th. That's all I know thanks for reading. Deb.
It took 2 hrs to get there - road closures of course - only 1hr and 15 mins. to get home.
It was a good visit but with many challenges ahead. Here's what I do know: BP too low 97/65, heart rate at rest 98 too high, reflexes almost none. My sweat test showed I only sweat 20% a definite autonomic dysfunction - they can not improve that.
I have what he calls Autonomic Phrenic Nerve Neuropathy (bilateral) - cause unknown. It is affecting my diaphragm, heart, lungs, esophagus, bladder and my small intestines. He said there is fear it is also affecting my Pulmonary Artery. It is progressive at this time - he said since my diabetes was Prednisone induced it did not cause the neuropathy. He further stated that if my diabetes had been over 300 on a daily basis that would account for the neuropathy. At diagnosis my A1C was 6.1 and never over 6.2 in the past 3 yrs..
I will need to go back on the 8th of Oct for another EMG with needle placement into the diaphragm to see how damaged it is. I will know then what if anything he can do for me. Right now he says he has never seen it this bad in someone who has not had injury to the phrenic nerves or a cause. Patients he has dealt with only have one nerve affected - both of mine are.
In the mean time I am not to exercise - keep sugars in the tight control they are - keep taking my water pills I currently am gaining up to 10 lbs of fluid a day even being on a sodium restricted diet of 800mgs a day - I am to weigh myself AM and PM and take my water pills accordingly - for my heart - I am to try to stay under 150 lbs today I was 145 and take it easy until the 8th. That's all I know thanks for reading. Deb.
One day I will soar on wings of an Eagle - Deb
6 Replies |Watch This Discussion | Report This| Share this:My NeuroMuscular Dr Visit - OTSome of you asked me to give an update on my visit to the new Dr in Madison. I do like him. Both him and his Associate seem to be very knowledgeable in this field. <br /><br />It took 2 hrs to get there - road closures of course - only 1hr and 15 mins. to get home.<br /><br />It was a good visit but with many challenges ahead. Here's what I do know: BP too low 97/65, heart rate at rest 98 too high, reflexes almost none. My sweat test showed I only sweat 20% a definite autonomic dysfunction - they can not improve that.<br /><br />I have what he calls Autonomic Phrenic Nerve Neuropathy (bilateral) - cause unknown. It is affecting my diaphragm, heart, lungs, esophagus, bladder and my small intestines. He said there is fear it is also affecting my Pulmonary Artery. It is progressive at this time - he said since my diabetes was Prednisone induced it did not cause the neuropathy. He further stated that if my diabetes had been over 300 on a daily basis that would account for the neuropathy. At diagnosis my A1C was 6.1 and never over 6.2 in the past 3 yrs..<br /><br />I will need to go back on the 8th of Oct for another EMG with needle placement into the diaphragm to see how damaged it is. I will know then what if anything he can do for me. Right now he says he has never seen it this bad in someone who has not had injury to the phrenic nerves or a cause. Patients he has dealt with only have one nerve affected - both of mine are.<br /><br />In the mean time I am not to exercise - keep sugars in the tight control they are - keep taking my water pills I currently am gaining up to 10 lbs of fluid a day even being on a sodium restricted diet of 800mgs a day - I am to weigh myself AM and PM and take my water pills accordingly - for my heart - I am to try to stay under 150 lbs today I was 145 and take it easy until the 8th. That's all I know thanks for reading. Deb.
phototaker responded:
Gosh, Debbie! Gee...you have so many challenges ahead. I'm so sorry about the fact your doctor had never seen something like this so bad in someone who has not damaged their phrenic nerves. I hope it's not as damaged as he thinks.
No exercise, sugars in tight control, water pills, etc. You've been doing so well considering all this. Take care and thanks for sharing this with us.
No exercise, sugars in tight control, water pills, etc. You've been doing so well considering all this. Take care and thanks for sharing this with us.
Report This| Share this:My NeuroMuscular Dr Visit - OTGosh, Debbie! Gee...you have so many challenges ahead. I'm so sorry about the fact your doctor had never seen something like this so bad in someone who has not damaged their phrenic nerves. I hope it's not as damaged as he thinks.<br /><br />No exercise, sugars in tight control, water pills, etc. You've been doing so well considering all this. Take care and thanks for sharing this with us.
krhudson responded:
Thank you Teddy for catching us up. It sounds like you found a great Dr. that will do everything possible to work with this. It is known by all I am sure that you will follow whatever instructions are given and fight this problem. All of us are here so keep us posted as to how things are going. Take care and one day at a time with this. I know, easy to say and miserable to do 
Your probably much more positive than me when the chips are down so show me how.
krhudson
Your probably much more positive than me when the chips are down so show me how.krhudson
Report This| Share this:My NeuroMuscular Dr Visit - OTThank you Teddy for catching us up. It sounds like you found a great Dr. that will do everything possible to work with this. It is known by all I am sure that you will follow whatever instructions are given and fight this problem. All of us are here so keep us posted as to how things are going. Take care and one day at a time with this. I know, easy to say and miserable to do <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> Your probably much more positive than me when the chips are down so show me how.<br /> <br />krhudson
soapster1949 responded:
Deb - Wishing you the best. I'm glad you finally got in to get to the root of the problem. By all means, keep us posted.
Report This| Share this:My NeuroMuscular Dr Visit - OTDeb - Wishing you the best. I'm glad you finally got in to get to the root of the problem. By all means, keep us posted.
Louise_WebMD_Staff responded:
Deb,
Peeking in because I can't help myself. I am glad you found someone very knowledgeable to look into this finally.
Uh oh on the progressive. I am sorry. I hope they can find some treatments to slow it and help you now.
Be careful and know I care even if you don't "see" me here, so keep updating.
Peeking in because I can't help myself. I am glad you found someone very knowledgeable to look into this finally.
Uh oh on the progressive.
I am sorry. I hope they can find some treatments to slow it and help you now. Be careful and know I care even if you don't "see" me here, so keep updating.
~Louise
Report This| Share this:My NeuroMuscular Dr Visit - OTDeb,<br /><br />Peeking in because I can't help myself. I am glad you found someone very knowledgeable to look into this finally. <br /><br />Uh oh on the progressive. <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> I am sorry. I hope they can find some treatments to slow it and help you now. <br /><br />Be careful and know I care even if you don't "see" me here, so keep updating.
teddybear200 responded:
photo - I will not have any problems following the Drs recommendations until the 8th, I do it now. My Phrenic Nerves are compromised by 80% meaning they are only working at 20% bilaterally. Who would think they can and do run things in our bodies. Not me - I never heard to Phrenic Nerves until the first EMG.
KR - Not a problem taking one day at a time - I seem to do better that way. As for being positive - well, I look at it a little differently than most - I was given one life to live and this is my life so I will make the best of it and keep going. I use the following phrase quite often - God grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference....
Louise - thank you for checking in on me that was so sweet. I know you had been following my story for some time and I was hoping you'd come by. Answers will be found and I pray treatment of some sort will follow to stop the progression. I hope you are doing good with so much on your plate.
KR - Not a problem taking one day at a time - I seem to do better that way. As for being positive - well, I look at it a little differently than most - I was given one life to live and this is my life so I will make the best of it and keep going. I use the following phrase quite often - God grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference....
Louise - thank you for checking in on me that was so sweet. I know you had been following my story for some time and I was hoping you'd come by. Answers will be found and I pray treatment of some sort will follow to stop the progression. I hope you are doing good with so much on your plate.
One day I will soar on wings of an Eagle - Deb
Report This| Share this:My NeuroMuscular Dr Visit - OT<b>photo</b> - I will not have any problems following the Drs recommendations until the 8th, I do it now. My Phrenic Nerves are compromised by 80% meaning they are only working at 20% bilaterally. Who would think they can and do run things in our bodies. Not me - I never heard to Phrenic Nerves until the first EMG. <br /><br /><b>KR </b>- Not a problem taking one day at a time - I seem to do better that way. As for being positive - well, I look at it a little differently than most - I was given one life to live and this is my life so I will make the best of it and keep going. I use the following phrase quite often - God grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference....<br /><br /><b>Louise</b> - thank you for checking in on me that was so sweet. I know you had been following my story for some time and I was hoping you'd come by. Answers will be found and I pray treatment of some sort will follow to stop the progression. I hope you are doing good with so much on your plate.
teddybear200 replied to soapster1949's response:
soapster - I am sorry for not including you in my comments - I did not see your post until now - yet it is in between Kr's and Louise's. As I know more I will update thanks for thinking of me - Deb.
One day I will soar on wings of an Eagle - Deb
Report This| Share this:My NeuroMuscular Dr Visit - OTsoapster - I am sorry for not including you in my comments - I did not see your post until now - yet it is in between Kr's and Louise's. As I know more I will update thanks for thinking of me - Deb.
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