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Re: Need some prayers UPDATE
Posted: Fri Mar 02, 2012 3:43 pm
by macewa
I'm usually good about questions, but his manner just threw me off. Next time I will be prepared. and even not being shown the scan so I knew what areas he was talking about. I guess coming from bigger cities, I expect more than these doctor are willing to give. There are so few I suspect they can get by with anything and most people aren't like me with lots of questions and researching online. When I told him I had reearched the term on line, he pushed it aside till later and was brusque with me. I need to more but can'''t housing prices dropped major here and with a large downpayment, I just cannot walk away.
HoseCrusher wrote:Wow, I hate it when you don't get all the questions answered and are pushed back out into the system for another round.
Is there any chance you can take someone with you to ask the questions you want answered? Sometimes the "tag team" approach gets more answers.
Re: Need some prayers UPDATE
Posted: Fri Mar 02, 2012 5:14 pm
by portiemom
My prayers are steady on the way to you! Keep persuing this, it has been my experience that Neuro Drs. and Neuro Surgeons consider themselves the elite of the medical community so keep going until you find one that will listen to you, and your health issues and concerns, I am having to do the same now that I am in a workmans comp. situation and the Neuro is a jerk, changes his orders after he sees the case manager RN. This is important and you need to get better care my friend.
Re: Need some prayers UPDATE
Posted: Fri Mar 02, 2012 8:17 pm
by DreamLady
Portiemom hit the nail on the head. I saw a neuro regularly for several years for my multiple sclerosis. For the first year he said he didn't think I had MS. The second year he said maybe I had MS, but it was mild. The third year he said it was Primary Progressive MS. He seemed to have all the time in the world for me until I decided I didn't want to take the drugs he was offering to 'treat' the MS. I had done my research and found out that the drugs not only don't offer much hope in the way retarding progression for my form of the disease, but they have risks of their own (liver and kidney problems). He soon lost interest in anything I had to say after that, and brushed off all my questions about symptom management.
A good neuro is hard to find.
Edited to say that some of what you wrote sounds suspiciously like MS symptoms. But then, MS has a lot of symptoms in common with many other neurological conditions, and it can take a while to nail down a diagnosis. I can, however, suggest that you request sedation for your MRI. After the first two, I don't have them any other way. It makes the entire situation much less unpleasant.
Re: Need some prayers UPDATE
Posted: Fri Mar 02, 2012 11:08 pm
by macewa
I have wondered about MS.
I plan to take an adivan before I go. If I could listen to music or something while in there it wouldn't be so bad. And I didn't freak out the first time, but the last 15 minutes, after the injection, he didn't give me the ball to squeeze if I was in trouble and that did upset me. It's a long time in that tiny thing. i handled it pretty good, but this time, knowing what it's going to be, I am not looking forward to it.
DreamLady wrote:Portiemom hit the nail on the head. I saw a neuro regularly for several years for my multiple sclerosis. For the first year he said he didn't think I had MS. The second year he said maybe I had MS, but it was mild. The third year he said it was Primary Progressive MS. He seemed to have all the time in the world for me until I decided I didn't want to take the drugs he was offering to 'treat' the MS. I had done my research and found out that the drugs not only don't offer much hope in the way retarding progression for my form of the disease, but they have risks of their own (liver and kidney problems). He soon lost interest in anything I had to say after that, and brushed off all my questions about symptom management.
A good neuro is hard to find.
Edited to say that some of what you wrote sounds suspiciously like MS symptoms. But then, MS has a lot of symptoms in common with many other neurological conditions, and it can take a while to nail down a diagnosis. I can, however, suggest that you request sedation for your MRI. After the first two, I don't have them any other way. It makes the entire situation much less unpleasant.
Re: Need some prayers
Posted: Mon Mar 05, 2012 11:55 am
by Kairosgrammy
I don't know why there is such a disparity among medical folks. I won't go to my local clinic. People tend to be rude, waits are long, etc. Instead I go to a doctor 30 miles away because I know I can trust him, people are polite and treat you well and they take the time to make sure you are satisfied with what has occurred. Because I go through him, his referrals are just about always through his clinic which is a part of a larger network of docs. I have been to two or three and have always come away feeling that my medical needs were met. It's a shame though that I have to go 30 miles out of my way in order to get good medical care when there's a clinic full of family physicians, specialists, visiting specialists etc. where most of my needs could be met in one place. *sigh*
I completely understand about the MRI also. I had one almost a year ago and told friends and family that if I never had another one, it would be too soon. I know one thing, they will have to give me some really good happy medicine to get me in another!!!!
macewa wrote:My brain sure needs those prayers. LOL
I had my visit with the neurologist and felt I was rushed through. He said those spots more than likely were caused by plaque build up ?? from years of smoking (quite in the early 90s), high cholesterol, etc. But then he says the spot in the back he thinks is from a minor stroke I had. Problem was he did not show me the scan and what he was talking about. Par for the course in this town. I felt very rushed and would you believe forgot to deal with the muscle problem. duhhhhh I felt like I did in the other little town where I had my sleep study done - visiting doctor, too many patients on one day. So, when I realize I didnt talke with him about the muscles, I went back and asked if I could have a few minute since I forgot to ask those questions. They said no, but to write it down and they would have him call me. Well, so far 24 hrs later, no call. I am supposed to have some blood tests done and another MRI (angiogram) and dread it because I hate being in that tiny tube for so long. 15 minutes wouldnt be so bad, but when you consider the added time for when they inject the dye -- I suspect it will be a good 45 minutes. I don't even know if I want to do this now.
My AHI for the past 3 days on the new numbers has stayed under 9. OAs under 4 so I'm getting there. But I do have periodic breathing every night (1.71, 7.38, 0.85) Clear air (is that Central?) every night too (1.98, 2.85, 11.41)
I "think" I'm sleep better because I'm getting more hours of sleep each night (straight through). But when I wake up, I'm very groggy. ??
HoseCrusher wrote:My thoughts and prayers are with you... and your brain.
Re: Need some prayers
Posted: Mon Mar 05, 2012 1:10 pm
by macewa
Today I met with my DME (wonderful gal that she is) and she gave me a copy of my sleep study report. The original doctor/doctor's office didn't give me one. Maybe I'm reading it wrong but it appears to me they should have written a prescription for auto BiPap and not the straight BiPap and that they should have prescribed supplemental oxygen with it. If that is the case, I wouldn't have had all of these months getting to that point just now. What appears to me is that there aren't enough knowledgeable people/doctors in the area of sleep apnea and there is still way too much they don't know about it. Seems with all the people that suffer from this, more time and money would be spent on research. I am told that sleep apnea can be the cause of high blood pressure, inability to lose weight, etc. If that is fact, then having a way to successfully treat patients would reduce a lot of health problems, doctor visits and hospital visit (all equate to a lot of money that could be saved). For me to get to better doctors, I have to drive 2 1/2 or 3 hours away and then I'd have to use other facilities that would cost more money and money I do not have.
Kairosgrammy wrote:I don't know why there is such a disparity among medical folks. I won't go to my local clinic. People tend to be rude, waits are long, etc. Instead I go to a doctor 30 miles away because I know I can trust him, people are polite and treat you well and they take the time to make sure you are satisfied with what has occurred. Because I go through him, his referrals are just about always through his clinic which is a part of a larger network of docs. I have been to two or three and have always come away feeling that my medical needs were met. It's a shame though that I have to go 30 miles out of my way in order to get good medical care when there's a clinic full of family physicians, specialists, visiting specialists etc. where most of my needs could be met in one place. *sigh*
I completely understand about the MRI also. I had one almost a year ago and told friends and family that if I never had another one, it would be too soon. I know one thing, they will have to give me some really good happy medicine to get me in another!!!!
macewa wrote:My brain sure needs those prayers. LOL
I had my visit with the neurologist and felt I was rushed through. He said those spots more than likely were caused by plaque build up ?? from years of smoking (quite in the early 90s), high cholesterol, etc. But then he says the spot in the back he thinks is from a minor stroke I had. Problem was he did not show me the scan and what he was talking about. Par for the course in this town. I felt very rushed and would you believe forgot to deal with the muscle problem. duhhhhh I felt like I did in the other little town where I had my sleep study done - visiting doctor, too many patients on one day. So, when I realize I didnt talke with him about the muscles, I went back and asked if I could have a few minute since I forgot to ask those questions. They said no, but to write it down and they would have him call me. Well, so far 24 hrs later, no call. I am supposed to have some blood tests done and another MRI (angiogram) and dread it because I hate being in that tiny tube for so long. 15 minutes wouldnt be so bad, but when you consider the added time for when they inject the dye -- I suspect it will be a good 45 minutes. I don't even know if I want to do this now.
My AHI for the past 3 days on the new numbers has stayed under 9. OAs under 4 so I'm getting there. But I do have periodic breathing every night (1.71, 7.38, 0.85) Clear air (is that Central?) every night too (1.98, 2.85, 11.41)
I "think" I'm sleep better because I'm getting more hours of sleep each night (straight through). But when I wake up, I'm very groggy. ??
HoseCrusher wrote:My thoughts and prayers are with you... and your brain.