Need some prayers UPDATE

macewa · Post by **macewa** » Mon Feb 27, 2012 11:34 pm

I had another bad night with muscle cramps/spasms. I will be seeing my med doctor tomorrow and a neurologist on Friday.

Obviously these cramps/spasms are interferring with my sleep and my OSA therapy. My AHI was up again, but all in all, it could be much worse. Considering the muscle problems during the night, my AHI was much better than I expected.

I picked up my brain MRI (on disk) and notes. I am very very concerned about what I read and if any of you out there pray, I need prayers for this not to be the worst outcome. I went to see the DME re tweaking my numbers but she was out sick so I will try tomorrow. I also see my ENT tomorrow afternoon about my OSA. So, I'm working on things and am pleased that my new sleep doctor's office called to ask me a question about my chart I left there. Someone is finally paying attention. LOL

DrPepper00 · Post by **DrPepper00** » Tue Feb 28, 2012 12:34 am

Praying that you will be able to rest tonight and get this all figured out.

hades161 · Post by **hades161** » Tue Feb 28, 2012 1:00 am

Best wishes and Godspeed on getting this under control.

Starlette · Post by **Starlette** » Tue Feb 28, 2012 1:10 am

Will pray Macwa. Keep us posted.

Starlette

kteague · Post by **kteague** » Tue Feb 28, 2012 1:22 am

Waiting for answers can be so nerve wracking, especially about things like brain scans. Mine at one time kept showing spots on my brain termed microvascular ischemic lesions that were increasing in size and in number. Haven't had another scan in a few years as I haven't had any new or worsened symptoms. In fact, I have improved since the last scan. Hopefully your concerns will soon be abated and your medical doctor identifies the cause of your muscle cramps. Hang in there.

DavidCarolina · Post by **DavidCarolina** » Tue Feb 28, 2012 1:42 am

I'll be praying for you right now.

SLeep is supposed to be our healing refresher but for many of us it has become a health-threatening, time consuming, expensive and dangerous
necessity. It can be very depressing.

To add insult to injury, almost none of our "friends" truly understand the implications of it to our health and time.

It sounds trite, but this board is the savior to many of us here in the sense that we couldnt do what we have to do without it.

Stick with it, there are solutions to your problems, PM me if I can be of any encouragement 24/7

my email is carolinablueridge@yahoo.com

macewa · Post by **macewa** » Tue Feb 28, 2012 2:11 am

First, let me say a huge thank you to everyone that responded.

In the notes re my brain MRI they use the words, "underlying leukoencephalopathy." After reading what this is, I really got shaken. But I have looked at what is going on with me in real life and it doesn't make a lot of sense because everything seems to be linked to my OSA. But maybe my OSA is related to the leukoencephalopathy. I don't have dementia, my memory is better than most for my age, and by gosh, I finished that 3 hours horrible test with decent scores. LOL But you never know and that is why I requested the prayers. My symptoms are vertigo, OSA, and severe muscle cramps. There are only a few leukoenephalopathies listed and none of them are good, but I can't really relate symptoms or causes. Guess I'll find out on Friday. All I know is that I have a white spot on my brain.

More importantly right now, I MUST find out how to stop these muscle spasms and cramps as they are very painful and there is no way I can sleep when they are happening and they can continue on for up to 30 minutes. Even in the palm of my hands. So, it's not just the legs. I get them in my stomach, shoulders etc. and they play havoc with my OSA and AHI numbers. I am going to request a number of blood tests tomorrow. I thought that maybe by adding oxygen to my BiPap would help, but I actually seem worse. Somehow that doesn't make sense to me -- muscles need oxygen, right?

I hope that you continue to improve.

kteague wrote:Waiting for answers can be so nerve wracking, especially about things like brain scans. Mine at one time kept showing spots on my brain termed microvascular ischemic lesions that were increasing in size and in number. Haven't had another scan in a few years as I haven't had any new or worsened symptoms. In fact, I have improved since the last scan. Hopefully your concerns will soon be abated and your medical doctor identifies the cause of your muscle cramps. Hang in there.

macewa · Post by **macewa** » Tue Feb 28, 2012 2:15 am

Thank you so much and yes, this board is the savior for me most of the time. Thank you for permissiion to PM. I just might have to at some point

DavidCarolina wrote:I'll be praying for you right now.

SLeep is supposed to be our healing refresher but for many of us it has become a health-threatening, time consuming, expensive and dangerous
necessity. It can be very depressing.

To add insult to injury, almost none of our "friends" truly understand the implications of it to our health and time.

It sounds trite, but this board is the savior to many of us here in the sense that we couldnt do what we have to do without it.

Stick with it, there are solutions to your problems, PM me if I can be of any encouragement 24/7

my email is carolinablueridge@yahoo.com

Julie · Post by **Julie** » Tue Feb 28, 2012 5:09 am

Hi- have you (or your doctors) considered a relatively well known and not uncommon problem called spinal stenosis? It can cause cramps and is not about a 'bad outcome', very treatable.

portiemom · Post by **portiemom** » Tue Feb 28, 2012 10:49 am

I agree with Julie, and glad I scanned this post, I had cramping from just under my left ear to my finger tips on the left hand, crossing over the elbow which lasted sometimes for 30 minutes or more. What hurt worse was the soreness for days in my arm, like after you get a leg spasm. After 2 MRI's and finally a great Neurosurgeon, I was diagnoised with Severe Spinal Stenosis of the C5, 6, 7, so bad that I had a Cervical Corepectomy, but just out of surgery, the pain was totally gone. The recouperation was tough 4 months in a Somi Brace from head to groin, but man my life is 100 percent better. Now I just struggle with the DDD, and Spondylothisis.
Get a great Nero Dr. and have them look at Spinal Stenosis, it is crippling pain.
Wishing you success, and relief soon!

macewa · Post by **macewa** » Tue Feb 28, 2012 12:19 pm

Thank Julie and Portiemom - I will check into this. I do not have any pain unless I have the cramps/spasms. I will go research it as I do see the neurologist on Friday. My ed person and I taked about this today and we feel that I do not exhibit any symptoms of this leukoencephalopathy stuff. That is might be more related to the OSA and muscle problems. Will find out soon enough. Keep those prayers a comin' in. Thanks.

portiemom wrote:I agree with Julie, and glad I scanned this post, I had cramping from just under my left ear to my finger tips on the left hand, crossing over the elbow which lasted sometimes for 30 minutes or more. What hurt worse was the soreness for days in my arm, like after you get a leg spasm. After 2 MRI's and finally a great Neurosurgeon, I was diagnoised with Severe Spinal Stenosis of the C5, 6, 7, so bad that I had a Cervical Corepectomy, but just out of surgery, the pain was totally gone. The recouperation was tough 4 months in a Somi Brace from head to groin, but man my life is 100 percent better. Now I just struggle with the DDD, and Spondylothisis.
Get a great Nero Dr. and have them look at Spinal Stenosis, it is crippling pain.
Wishing you success, and relief soon!

Kairosgrammy · Post by **Kairosgrammy** » Tue Feb 28, 2012 1:36 pm

Prayers just went up. Let us know how things go. Sorry you are having to go through this.

macewa wrote: I am very very concerned about what I read and if any of you out there pray, I need prayers for this not to be the worst outcome.

HoseCrusher · Post by **HoseCrusher** » Tue Feb 28, 2012 2:50 pm

My thoughts and prayers are with you... and your brain.

macewa · Post by **macewa** » Fri Mar 02, 2012 3:14 pm

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.

HoseCrusher · Post by **HoseCrusher** » Fri Mar 02, 2012 3:32 pm

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.

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