Rare Ozark_Kid Posted March 15, 2023 #88101 Share Posted March 15, 2023 I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. 12 3 Link to comment Share on other sites More sharing options...
lenquixote66 Posted March 15, 2023 #88102 Share Posted March 15, 2023 4 minutes ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. I hope and pray that you will get good results,John. 1 1 Link to comment Share on other sites More sharing options...
mets07 Posted March 15, 2023 #88103 Share Posted March 15, 2023 6 minutes ago, Ozark_Kid said: Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. Try to take it one day at a time until things are more conclusive. Easy for me to say. I am praying for you. ☘️ 1 1 Link to comment Share on other sites More sharing options...
Ocean Boy Posted March 15, 2023 #88104 Share Posted March 15, 2023 10 minutes ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. Definitely important to have the MRIs. Please keep us informed as testing progresses. 2 1 Link to comment Share on other sites More sharing options...
Sunshine3601 Posted March 15, 2023 #88105 Share Posted March 15, 2023 1 hour ago, Ozark_Kid said: Is it just me? Noticed this pic yesterday of Kenzie taken just last Summer. And this is from yesterday. She looks to me like she is growing up so fast. I love how her hair grows longer on the sides than the front. Kenzie came over today and as always headed straight to see how Finnley was doing. Then she wanted me to play with a balloon. She would run up and throw it at me. It's always fun to have Grandkids over! Thank you for posting sweet Kenzie pictures. I noticed her hair getting longer in your Disney pics. They do grow up fast. She is extra special in my heart. I hope to meet someday and have her drive😁 2 1 Link to comment Share on other sites More sharing options...
Rare Ozark_Kid Posted March 15, 2023 #88106 Share Posted March 15, 2023 16 minutes ago, Ocean Boy said: Definitely important to have the MRIs. Please keep us informed as testing progresses. I helped a young nurse set a record. She drew 11 vials of blood for testing. Before me her high was 10. They also tested my breathing and decided to order a Trilogy machine to be delivered to my house. We will see if insurance will approve it. 3 1 Link to comment Share on other sites More sharing options...
taznremmy Posted March 15, 2023 #88107 Share Posted March 15, 2023 @Ozark_Kid Sending positive thoughts and prayers your way. Thank you for letting us know. 8 1 Link to comment Share on other sites More sharing options...
reallyitsmema Posted March 15, 2023 #88108 Share Posted March 15, 2023 @Ozark_Kid You are in my thoughts and prayers. 3 1 Link to comment Share on other sites More sharing options...
NHProud Posted March 15, 2023 #88109 Share Posted March 15, 2023 What @Ocean Boy said . Prayers for you and take care . 4 1 Link to comment Share on other sites More sharing options...
Keksie Posted March 15, 2023 #88110 Share Posted March 15, 2023 1 hour ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. thank you for sharing. I will be keeping you in my thoughts and prayers. Keep us updated as you want to. There is a lot of care on this thread and hopefully you can feel the warmth of it. 6 1 Link to comment Share on other sites More sharing options...
#55worktoplay Posted March 15, 2023 #88111 Share Posted March 15, 2023 @Ozark_Kid I am mostly a lurker on here mostly to do with not being able to keep up. I felt I needed to post that I will thinking of you and sending my prayers. I love you sharing pics of your beautiful grandchildren and that Kenzie is not only so gorgeous she is such a happy child. I love seeing them all! Take care. 7 1 Link to comment Share on other sites More sharing options...
Vibe Posted March 15, 2023 #88112 Share Posted March 15, 2023 2 hours ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. Sending prayers and hugs to you. 3 1 Link to comment Share on other sites More sharing options...
jmh2006 Posted March 15, 2023 #88113 Share Posted March 15, 2023 1 hour ago, NHProud said: What @Ocean Boy said . Prayers for you and take care . Ditto! 🙏🙏 2 1 Link to comment Share on other sites More sharing options...
Rare A&L_Ont Posted March 15, 2023 #88114 Share Posted March 15, 2023 2 hours ago, mets07 said: Try to take it one day at a time until things are more conclusive. Easy for me to say. I am praying for you. ☘️ We are as well. 3 1 Link to comment Share on other sites More sharing options...
HBE4 Posted March 15, 2023 #88115 Share Posted March 15, 2023 @Ozark_Kid Thank you for sharing & keep us updated as much as you want. Send postive vibes your way. 2 1 Link to comment Share on other sites More sharing options...
molly361 Posted March 15, 2023 #88116 Share Posted March 15, 2023 @Ozark_Kidsending lots of virtual hugs 2 1 Link to comment Share on other sites More sharing options...
grapau27 Posted March 15, 2023 #88117 Share Posted March 15, 2023 (edited) 11 hours ago, dani negreanu said: So this evening I went out with one group of my girlfriends (we were all relocated to Brussels at the same time in the eighties...). Besides enjoying an evening out, the aim was to "change the atmosphere" for one of our friends, who started chemo not long ago, and it was the first time she went out with "false hair" (on my right). I admire her for being so upbeat and optimistic. And here in better times, on a cruise to the Canaries (2015, Anthem), with our guide in Lisbon and her DH. Lovely photos Dani. Prayers 🙏 for your friend having successful chemo treatment. It is sunny and 30°F here at 08.00am in North East England. Graham Edited March 15, 2023 by grapau27 3 1 Link to comment Share on other sites More sharing options...
grapau27 Posted March 15, 2023 #88118 Share Posted March 15, 2023 6 hours ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. Our prayers 🙏 and best wishes John for your treatment to be successful and your health to be good. Take care. Graham. 5 1 Link to comment Share on other sites More sharing options...
sgmn Posted March 15, 2023 #88119 Share Posted March 15, 2023 8 hours ago, Ozark_Kid said: I helped a young nurse set a record. She drew 11 vials of blood for testing. Before me her high was 10. They also tested my breathing and decided to order a Trilogy machine to be delivered to my house. We will see if insurance will approve it. My thoughts and prayers too with you and your family. I hope the tests and MRIs show positive results . So sorry you're having to go through this. 2 1 Link to comment Share on other sites More sharing options...
Sunshine3601 Posted March 15, 2023 #88120 Share Posted March 15, 2023 (edited) 9 hours ago, Ozark_Kid said: I have hesitated sharing. I wanted final results first but my experience keeps getting longer. You may remember me mentioning that my balance has been getting bad and my legs have gotten weak. After our Disney trip I finally agreed to go to the Doctors. Short version, Friday I had a Nerve Conduction Study and EMG. He was very thorough, 1hr and 20 minutes. I am not a doctor so my wording may not be perfect. The results of the EMG showed Motor Neuron damage. Yesterday I had a Neurologist appointment. Again very thorough, 3 1/2 hours with no breaks or waiting. Many things tested. She wants me to have some MRIs to see if she can find a different reason. I wanted to wait until the MRI results but that, as of now, will be mid April. Based on the EMG and my symptoms the Neurologist says ALS is probable. With the MRIs being put off she has asked me to come in to discuss different treatments. I, like most here, know the care we have for one another so I felt I should share. Ahh John, sorry to hear you are having to go through all of this. Praying and hoping the test results have a favorable outcome for you. I'm sure this is all very scary. Stay positive. And Thank you for sharing. We are all here for you.❤ Please keep us posted Edited March 15, 2023 by Sunshine3601 3 1 Link to comment Share on other sites More sharing options...
Rare h20skibum Posted March 15, 2023 #88121 Share Posted March 15, 2023 @Ozark_Kid John, as many others have said, we are also praying for a positive outcome for you. It can be very stressful waiting on test results. 2 1 Link to comment Share on other sites More sharing options...
Sea Viewer Posted March 15, 2023 #88122 Share Posted March 15, 2023 @Ozark_Kid adding my prayers that your medical team can find treatments to help you. 2 1 Link to comment Share on other sites More sharing options...
Arzeena Posted March 15, 2023 #88123 Share Posted March 15, 2023 11 hours ago, lenquixote66 said: I hope and pray that you will get good results,John. Joining in prayer as well. 1 1 Link to comment Share on other sites More sharing options...
Arzeena Posted March 15, 2023 #88124 Share Posted March 15, 2023 (edited) I try to live in the present and follow "The past is gone, the future is not here, now I am free of both." Sharing here in case it helps somebody. It is very liberating. I used to worry about the past and future all the time! Edited March 15, 2023 by Arzeena 11 3 Link to comment Share on other sites More sharing options...
dani negreanu Posted March 15, 2023 Author #88125 Share Posted March 15, 2023 13 hours ago, Sunshine3601 said: Thank you for posting sweet Kenzie pictures. I noticed her hair getting longer in your Disney pics. They do grow up fast. She is extra special in my heart. I hope to meet someday and have her drive😁 + 1 💕 10 hours ago, HBE4 said: @Ozark_Kid Thank you for sharing & keep us updated as much as you want. Send positive vibes your way. @Ozark_Kid John, I'm very saddened by the so far results, but optimistic that whatever it is, it was caught early and new drugs and treatments are emerging. Just read about a promising drug - Relyvrio. Glad you decided to share. In speaking with my friend, she told me she has chosen to share instead of hiding the fact that she's facing metastatic breast cancer. She said that all the energy people invest in hiding should be put into keeping a positive attitude -- "A healthy soul in a healthy body". Take care, you're in my thoughts. 17 3 Link to comment Share on other sites More sharing options...
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