L4dybugg
Distinguished member
- Joined
- Sep 4, 2008
- Messages
- 148
- Country
- US
- State
- TN
- City
- Knoxville
Trip to regular Neuro
Thanks MtPockets
I am doing my best. Yes I agree about the support, more so now than ever before. I know he is carrying a heavy load, and is scared. I am doing my very best to understand.
Andy had a real bad night, he was up all night long cramping so bad, he had alot of jerking or twitching going on with it. And he says his legs feels like weights now. It hurts to see this happening to him, and I can't take his pain away. I wish I could.
We went to the neuro today, but we did not get very far, it is getting very frustrating, still no diagnosed. She is one of those drs that will not hardly tell you anything, no matter how hard you try to get it out of them. She did alot of writing though. lol. I understand they have to do that, but hey we'd like some feed back here. lol. She did say that his oxygen was a little low. We still do not have the appointment made yet to the ALS Center in Nashville. They are working on it, they are trying to get his biopsy slides from New york. I understand that it takes time, and there is a process. But my husband is on the verge of not being able to work, and we still don't know what is going on. We gave her the disk from the chest x-rays, nothing much was said about that.
My heart just about broke in the office today watching my husband's face, as she said "we have to do more testing", and still no answers. He just about broke down and cried there. He told her about the depression starting in, all she said was, "that is understandable". And that was it, nothing more.
She wants him to go to a pulmonologist to do some pulmonary testing. And he has to go and do a swallowing test. I understand this takes time, but sometimes I think she don't even know what he has, she will not say anything much to us. I do understand she has to be sure before making a diagnosed. But I'm like this, if you don't know, then send him where someone does. It's like everytime we go back, we get conflicting info. We got more out of the neurosurgeon and the ER drs than her.
Now we have another concern, This ALS center is not on our insurance plan, it is out of network, and if they beat around the bush and get his appointment the first of the year, It's going to cost us a whole lot more, out of our own pocket. And Andy said if they wait that long, he might not even go at all. So he told her to get it before the first of the year.
So we have done all we know to do. And he keeps getting worse, and can't go much longer. With no answers.
All we can do now is just wait it out!
Thanks MtPockets
I am doing my best. Yes I agree about the support, more so now than ever before. I know he is carrying a heavy load, and is scared. I am doing my very best to understand.
Andy had a real bad night, he was up all night long cramping so bad, he had alot of jerking or twitching going on with it. And he says his legs feels like weights now. It hurts to see this happening to him, and I can't take his pain away. I wish I could.
We went to the neuro today, but we did not get very far, it is getting very frustrating, still no diagnosed. She is one of those drs that will not hardly tell you anything, no matter how hard you try to get it out of them. She did alot of writing though. lol. I understand they have to do that, but hey we'd like some feed back here. lol. She did say that his oxygen was a little low. We still do not have the appointment made yet to the ALS Center in Nashville. They are working on it, they are trying to get his biopsy slides from New york. I understand that it takes time, and there is a process. But my husband is on the verge of not being able to work, and we still don't know what is going on. We gave her the disk from the chest x-rays, nothing much was said about that.
My heart just about broke in the office today watching my husband's face, as she said "we have to do more testing", and still no answers. He just about broke down and cried there. He told her about the depression starting in, all she said was, "that is understandable". And that was it, nothing more.
She wants him to go to a pulmonologist to do some pulmonary testing. And he has to go and do a swallowing test. I understand this takes time, but sometimes I think she don't even know what he has, she will not say anything much to us. I do understand she has to be sure before making a diagnosed. But I'm like this, if you don't know, then send him where someone does. It's like everytime we go back, we get conflicting info. We got more out of the neurosurgeon and the ER drs than her.
Now we have another concern, This ALS center is not on our insurance plan, it is out of network, and if they beat around the bush and get his appointment the first of the year, It's going to cost us a whole lot more, out of our own pocket. And Andy said if they wait that long, he might not even go at all. So he told her to get it before the first of the year.
So we have done all we know to do. And he keeps getting worse, and can't go much longer. With no answers.
All we can do now is just wait it out!
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