monarog
01-31-2008, 11:15 AM
Hi Doug,
You are totally on my mind and in my thoughts and prayers today. I am praying you get some positive answers with the specialist today and can put your mind to rest. Also, that the EMG is not too uncomfortable, I've only had one, I could handle the needles okay, but really hated the shocking NVC part of it.
Anyway, when you feel up to it, please let us know how you're feeling and how things are going. Sending prayers and positive thoughts your way. Mona
You are totally on my mind and in my thoughts and prayers today. I am praying you get some positive answers with the specialist today and can put your mind to rest. Also, that the EMG is not too uncomfortable, I've only had one, I could handle the needles okay, but really hated the shocking NVC part of it.
Anyway, when you feel up to it, please let us know how you're feeling and how things are going. Sending prayers and positive thoughts your way. Mona
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Braveheart07
01-31-2008, 08:19 PM
Hi Mona--
THANK-YOU for the prayers, and thoughts----I've changed my name,(not totally my own idea) but it's me (Doug)---OK-Today was lots of fun----VERY THOROUGH EMG, and Thank-God it was----they (Columbia Presbyterian) found a nerve problem in my neck, that is causing the weakness in my left hand, and POSSIBLY my legs---Dr. Mitsimoto said it is "MULTI-FOCAL MOTOR NEUROPATHY WITH CONDUCTION BLOCK"--- and is treatable with Intravenous Immunoglobulin Therapy...which is 5 days of IV every 4 weeks for 3 months. I've only started to research this, but about 1/3 of the people regain their muscle strength and stop therapy, 1/3 respond initially, but need further therapy, and 1/3 don't respond at all. So this is pretty good news, with the potential to be GREAT news. This condition explains the left sided weakness despite the right-sided nature of my herniation, and also could explain the fasciculations (always a concern of mine).....I still have the structural issues in my neck- but I am told they are mild to moderate....the OPLL (Ossification of the Posterior Longitudinal Ligament) is very mild according to Dr. Mitsimoto, who has seen alot of this in Japan.
SO----while they didn't rule out my worst fear-ALS- they found an explanation for a major symptom--so we are very relieved to say the least.
I cannot THANK-YOU (and my other board "Dr's") for your prayers, and support. I believe I saw that you are scheduled for surgery on the 6th-- I will DEFINITELY say a few prayers for you. This is shoulder surgery ?? What about the Lyme Dr.?---Did they find anything ?? You spread so much good Karma, it's going to come back to you, no doubt.
Mona -thanks again---talk to you soon. Doug
THANK-YOU for the prayers, and thoughts----I've changed my name,(not totally my own idea) but it's me (Doug)---OK-Today was lots of fun----VERY THOROUGH EMG, and Thank-God it was----they (Columbia Presbyterian) found a nerve problem in my neck, that is causing the weakness in my left hand, and POSSIBLY my legs---Dr. Mitsimoto said it is "MULTI-FOCAL MOTOR NEUROPATHY WITH CONDUCTION BLOCK"--- and is treatable with Intravenous Immunoglobulin Therapy...which is 5 days of IV every 4 weeks for 3 months. I've only started to research this, but about 1/3 of the people regain their muscle strength and stop therapy, 1/3 respond initially, but need further therapy, and 1/3 don't respond at all. So this is pretty good news, with the potential to be GREAT news. This condition explains the left sided weakness despite the right-sided nature of my herniation, and also could explain the fasciculations (always a concern of mine).....I still have the structural issues in my neck- but I am told they are mild to moderate....the OPLL (Ossification of the Posterior Longitudinal Ligament) is very mild according to Dr. Mitsimoto, who has seen alot of this in Japan.
SO----while they didn't rule out my worst fear-ALS- they found an explanation for a major symptom--so we are very relieved to say the least.
I cannot THANK-YOU (and my other board "Dr's") for your prayers, and support. I believe I saw that you are scheduled for surgery on the 6th-- I will DEFINITELY say a few prayers for you. This is shoulder surgery ?? What about the Lyme Dr.?---Did they find anything ?? You spread so much good Karma, it's going to come back to you, no doubt.
Mona -thanks again---talk to you soon. Doug
monarog
01-31-2008, 08:59 PM
Hey Doug...
I just popped online...so happy to hear your GREAT news. Sounds like the doc has a great strategy planned out for you. I will now be praying for AWESOME results! Yipee! I bet you'll sleep well tonight, sure hope you do. Sounds like they found the cause of your weakness, great relief. I think many of us with bad necks experience the twitching stuff, not uncommon from what I've read. Though yes, can be unnerving (no pun intended).
I think you just got your "board Drs." a bit confused. I think it's Marcia (aka: feelbad) who is facing the shoulder surgery. She's been through so much, hope it's a success. Please re-visit and keep us posted on how your therapy is working. I've had a rough few days. I am a tremory mess, just feel like my heart is racing, the usual numbness, twitching stuff, racing nerves, ugh! I'm feeling really frustrated with no answers. I am awaiting my lab results (like 35 tubes worth!). Not to sound negative, but I've had some blood work in the past that came out okay, so let's say I'm not holding my breath. If it looks all relatively "normal" the next step will be an Igenex kit that will be sent off. I think Lyme is highly unlikely, but am searching for anything that might cause this incredible nervous system mess I'm in. I still am in awe sometimes that it's not all my neck, but what do I know? I just still have no relief of the neck or arm pain since my ACDF and all this neuro junk is unrelenting....hopefully, one day someone will have some ideas for me and can help provide me some relief.
Again, let us know how things go for you. What great news! Mona
I just popped online...so happy to hear your GREAT news. Sounds like the doc has a great strategy planned out for you. I will now be praying for AWESOME results! Yipee! I bet you'll sleep well tonight, sure hope you do. Sounds like they found the cause of your weakness, great relief. I think many of us with bad necks experience the twitching stuff, not uncommon from what I've read. Though yes, can be unnerving (no pun intended).
I think you just got your "board Drs." a bit confused. I think it's Marcia (aka: feelbad) who is facing the shoulder surgery. She's been through so much, hope it's a success. Please re-visit and keep us posted on how your therapy is working. I've had a rough few days. I am a tremory mess, just feel like my heart is racing, the usual numbness, twitching stuff, racing nerves, ugh! I'm feeling really frustrated with no answers. I am awaiting my lab results (like 35 tubes worth!). Not to sound negative, but I've had some blood work in the past that came out okay, so let's say I'm not holding my breath. If it looks all relatively "normal" the next step will be an Igenex kit that will be sent off. I think Lyme is highly unlikely, but am searching for anything that might cause this incredible nervous system mess I'm in. I still am in awe sometimes that it's not all my neck, but what do I know? I just still have no relief of the neck or arm pain since my ACDF and all this neuro junk is unrelenting....hopefully, one day someone will have some ideas for me and can help provide me some relief.
Again, let us know how things go for you. What great news! Mona
neckpatient
02-01-2008, 02:16 AM
Wohoo - sounds pretty good. I haven't been on much this week, and come on to find this good news from you and Mrs Braveheart - other post. Ok got your new handle and just wondering why you called yourself the Hittman anyway! Sure sounded more ominious lol. Sounds like a good day for you! This is a much better journey to be on.......
Braveheart07
02-01-2008, 10:12 AM
Hey Neckpatient--
Thanks for the prayers, and good Karma---
This prognosis definitely answers the question of left sided weakness, with right sided herniated/bulging discs...there are still issues with my neck to be dealt with.
As far as my "new handle"---apparently "the hittman" didn't read the rules of the board sufficiently enough.."Braveheart07" is a wiser man or it----my wife jumped on to say "thanks" to my "board Dr.s"...I've mentioned to her how supportive, and knowledgeable you guys are...(The name "Hittman" is a nickname given to me a long time ago, based partially on my last name...)
Anyway---I hope you have nothing but good news, and pain free days coming your way......you are very deserving of that to say the least...
Thanks again,
Doug
Thanks for the prayers, and good Karma---
This prognosis definitely answers the question of left sided weakness, with right sided herniated/bulging discs...there are still issues with my neck to be dealt with.
As far as my "new handle"---apparently "the hittman" didn't read the rules of the board sufficiently enough.."Braveheart07" is a wiser man or it----my wife jumped on to say "thanks" to my "board Dr.s"...I've mentioned to her how supportive, and knowledgeable you guys are...(The name "Hittman" is a nickname given to me a long time ago, based partially on my last name...)
Anyway---I hope you have nothing but good news, and pain free days coming your way......you are very deserving of that to say the least...
Thanks again,
Doug
Braveheart07
02-01-2008, 10:37 AM
Hey Mona--
I had a feeling I may have confused you with Marcia on the surgery issue--sorry...I know you were facing the Lyme testing...it may be a remote possibility, but if it's negative, at least you can rule it out and move on. You are now 1 step closer to finding the cause of all this junk. It may be more than one thing.I am curious--have you ever taken a Statin medication for cholesterol ?? They have all kinds of unexplainable side effects. I think that may be what has caused some/most of my problems--there is plenty of data on the web---I can't mention the sites,(the hittman made that mistake), but I'm sure a seasoned researcher like you can find it............ It sounded like you really liked this last Dr...I would pick her brain as much as possible, she (it was a "she" right?) sounded like a caring person that would try to work with you, not just write a script to help you cope. I haven't been going through this stuff nearly as long as you have, and a certainly understand being negative, and depressed. I can tell you what worked for my "depression"....I really haven't been out of the house too much since this started (Sept.)..I haven't seen the sun in so long, I thought I may be Vitamin D deficient, so I took 2 400mg tabs, and honestly it worked right from the start..(I have samples of Lexapro my doctor gave me UNOPENED in my kitchen---I really don't need more pills with more side effects)...It may help with your mood, which sometimes is a huge struggle, and allow you to continue searching. Whatever you do, DON'T GIVE UP !---THERE IS AN ANSWER OUT THERE... In the mean time, you'll be in my thoughts and prayers....
Thanks for all of your help......I hope I can return the favor....
Doug
I had a feeling I may have confused you with Marcia on the surgery issue--sorry...I know you were facing the Lyme testing...it may be a remote possibility, but if it's negative, at least you can rule it out and move on. You are now 1 step closer to finding the cause of all this junk. It may be more than one thing.I am curious--have you ever taken a Statin medication for cholesterol ?? They have all kinds of unexplainable side effects. I think that may be what has caused some/most of my problems--there is plenty of data on the web---I can't mention the sites,(the hittman made that mistake), but I'm sure a seasoned researcher like you can find it............ It sounded like you really liked this last Dr...I would pick her brain as much as possible, she (it was a "she" right?) sounded like a caring person that would try to work with you, not just write a script to help you cope. I haven't been going through this stuff nearly as long as you have, and a certainly understand being negative, and depressed. I can tell you what worked for my "depression"....I really haven't been out of the house too much since this started (Sept.)..I haven't seen the sun in so long, I thought I may be Vitamin D deficient, so I took 2 400mg tabs, and honestly it worked right from the start..(I have samples of Lexapro my doctor gave me UNOPENED in my kitchen---I really don't need more pills with more side effects)...It may help with your mood, which sometimes is a huge struggle, and allow you to continue searching. Whatever you do, DON'T GIVE UP !---THERE IS AN ANSWER OUT THERE... In the mean time, you'll be in my thoughts and prayers....
Thanks for all of your help......I hope I can return the favor....
Doug
monarog
02-01-2008, 11:18 AM
Hi Doug and Mrs. Braveheart,
Thanks for the brainstorming...no, never any statins. Yes, I've read a bit about some of the side effects that can be pretty nasty. My dad, he's 79, had some immediate neurological side effects (mainly weakness) almost immediately when he started taking them years ago. Needless to say he stopped them right then. I am 46, up until all of this I was running long distance 3-4 days weekly, even did a couple of 50k races, mind you slowly, but did it! Anyhoo....appreciate any ideas. I have absolutely no history of running to docs, mental illness, anxiety and the like. Something physical is causing this, just need to get figured out! I blew the disc and just went downhill from there. I see the Doc again 2-18, I will ask her about the Rx you're talking about. Of course, when a person goes through all we're experiencing, depression is only normal - I told her before - I have no doubt that comes into play. But....it is a RESULT of feeling crummy, not the CAUSE.
Again, sure do appreciate ideas and support, everyone. I hope you start seeing some improvement early on in your therapy; I know that would really be encouraging to you and your family.
I like NP's idea about doing good for another after you've received such encouraging news...I think I'll try that on your behalf. Truly, I do believe the prayers and positive thoughts really do help!
Take good care. Mona
Thanks for the brainstorming...no, never any statins. Yes, I've read a bit about some of the side effects that can be pretty nasty. My dad, he's 79, had some immediate neurological side effects (mainly weakness) almost immediately when he started taking them years ago. Needless to say he stopped them right then. I am 46, up until all of this I was running long distance 3-4 days weekly, even did a couple of 50k races, mind you slowly, but did it! Anyhoo....appreciate any ideas. I have absolutely no history of running to docs, mental illness, anxiety and the like. Something physical is causing this, just need to get figured out! I blew the disc and just went downhill from there. I see the Doc again 2-18, I will ask her about the Rx you're talking about. Of course, when a person goes through all we're experiencing, depression is only normal - I told her before - I have no doubt that comes into play. But....it is a RESULT of feeling crummy, not the CAUSE.
Again, sure do appreciate ideas and support, everyone. I hope you start seeing some improvement early on in your therapy; I know that would really be encouraging to you and your family.
I like NP's idea about doing good for another after you've received such encouraging news...I think I'll try that on your behalf. Truly, I do believe the prayers and positive thoughts really do help!
Take good care. Mona
Braveheart07
02-01-2008, 08:07 PM
OK Mona--
I've got a new angle for you to try.....someone recently sent me links to sites that were full of medical research (not some snake oil website) that stated this combination of supplements can promote the release of your own stem cells from your bone marrow.(obviously, since Braveheart07 knows the rules of the board better than the hittman did---I can't post them) These cells can then become any cell in your body that may be depleted. If this is true---it is quite amazing...
L-Carnosine 500 mg.
Vitamin D3 1000mg.
Wild Blueberry Extract 1000mg.
Green Tea Extract 500 mg.
I read this research, and figured I had nothing to lose, and everything to gain----read the medical stuff yourself (again, not the snake oil promises-----of course you already know this).....If the Doc's can't find the answer-----let's find it ourselves !!!
I've got a new angle for you to try.....someone recently sent me links to sites that were full of medical research (not some snake oil website) that stated this combination of supplements can promote the release of your own stem cells from your bone marrow.(obviously, since Braveheart07 knows the rules of the board better than the hittman did---I can't post them) These cells can then become any cell in your body that may be depleted. If this is true---it is quite amazing...
L-Carnosine 500 mg.
Vitamin D3 1000mg.
Wild Blueberry Extract 1000mg.
Green Tea Extract 500 mg.
I read this research, and figured I had nothing to lose, and everything to gain----read the medical stuff yourself (again, not the snake oil promises-----of course you already know this).....If the Doc's can't find the answer-----let's find it ourselves !!!
monarog
02-02-2008, 10:19 AM
Yoo, hoo! Yes, I will look it up and probably end up at my local vitamin supplement store. Believe me, I am open to anything - already tried the acupuncture, osteopathic route. When a person is really fouled up, at least me, I am really open to ideas and trying things. Thanks for your kindness. We'll be in touch. Mona
fergie1
02-06-2008, 07:35 PM
Hi Mona, have you heard anything else about your blood work? I seen on here where you are heading back to the doc on the 18th. Is this when he is drawing the blood work for IGENEX? Just thought I would drop by and see if anything is new with you. Nothing here.
Jen
Jen
monarog
02-07-2008, 11:06 AM
Hi Jen...
I'll keep you posted. Yes, I go over my blood work with her on the 18th, if nothing is revealing, then I take the Igenex kit to the lab. The doc said that would take about 3 weeks for results....so mid March. Unless she can convince me otherwise with something in my current blood work, I think I will insist on the Igenex testing as well. I figure one more thing to rule out - it's a long shot; however, when I read the Lyme symptom list I have about 80% of those symptoms. I'll let you know what I find out on the 18th. Hope you're feeling okay. Also, hope you can get into an LLMD - one more thing for you to rule out as well. I'm sure my insurance won't cover it, ugh...more $. Take care Jen. Mona
I'll keep you posted. Yes, I go over my blood work with her on the 18th, if nothing is revealing, then I take the Igenex kit to the lab. The doc said that would take about 3 weeks for results....so mid March. Unless she can convince me otherwise with something in my current blood work, I think I will insist on the Igenex testing as well. I figure one more thing to rule out - it's a long shot; however, when I read the Lyme symptom list I have about 80% of those symptoms. I'll let you know what I find out on the 18th. Hope you're feeling okay. Also, hope you can get into an LLMD - one more thing for you to rule out as well. I'm sure my insurance won't cover it, ugh...more $. Take care Jen. Mona