Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Nan, I'm glad you're back on the forum, but really sorry to hear you're still struggling. Have you been checked for heavy metals? The reason I ask is some of your symptoms sound similar to mine...in bed for days, difficult to hold head up, bothered by noise, feel like death, painful spots in neck and then a few days later somewhat better but nowhere near well. I don't have the pain you describe but I have weird, dull muscle aches. I've had all the convential blood and other tests for MS and everything else under the sun...all came back negative. Traditional docs didn't help me at all. I also considered Mayo but have read all over the internet that they know nothing about toxicity. When I did a heavy metals hair analysis through Doctor's Data Lab (by Mercola's office), we found out that I have very high mercury. I've chelated once and my vision and energy has improved dramatically although not 100% and I still have many other symptoms. Ask your Environmental doc what he thinks about a hair analysis. Oh, don't do it by blood though...my blood showed normal for heavy metals, yet hair and urine showed I was in the 90th percentile. Hang in there and much luck! Love, PH > > Sue, I wish I could really describe them. They started out like > complete fatigue and I would pass out for days. That is gone. Now > I get where I almost feel like there is no oxygen in my head like I > am being strangled, I start to feel a lot of pain, any movement or > noise is painful, and I just have to go to bed and wait it out for > days until it passes. I don't sleep, it is just like lying there > feeling like death. Then I can barely walk for weeks, I can't speak > right, it is so scary. Then I start to recover and after a few > months I notice I can go out and walk around at a normal level. I > can still barely hold my head up for long. I have a ton of " tender " > spots I have found on my neck and shoulders, but are more like > severely painful spots! I do not stay in bed much anymore, I have > been able to get up. But I am very careful about my activity. > Seems sort of extreme for fibromyalgia. Does that sound at all > familiar? I am so frustrated by not knowing what it is. And the > doctors have all said they have never heard anything like it. My > MRI is tomorrow, it was sch for today and they messed up. The neuro > said it sounds like MS attacks, but even he said he is not sure. > And I am really not describing what I have read about MS. I also > have an appt with the environmental medicine center next week which > is very pricey, but they say they treat women with implant illness, > so I will let you all know what they say. My husband is driving me > crazy trying to get me to go to the mayo clinic to try to get > someone to figure it out. Several doctors said fibro, several said > it is not. I totally went off the diet and back on sugar so I could > gain some weight. I feel like crap, but don't even have the energy > to go out and get fresh food. And I did finally gain some weight > back. I forgot the rashes! I have had outbreak after outbreak, all > over my neck and jawline, the neuro said he has no idea what it is. > Another trip to another doctor is just too much. I am going to PT > twice a week, and all the other stuff, it is just ridiculous. On the > better side, I have been able to walk a lot more, stretch a bit, > have more mental clarity, and the best is not having to stay in bed > for days. I had a slight attack a few days ago but caught it in > time so I was able to minimize it. ANY body have any attacks like > this? And Sue, yes mine at one point were like panic attacks with > bad heart beating and such, but most of the doctors said it is not > anxiety or panic (and I just had very bad anxiety at my last MRI and > it is nothing like what these attacks are so I am pretty confident > it is not that). Sorry so long! Love Nan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Nan, I'm glad you're back on the forum, but really sorry to hear you're still struggling. Have you been checked for heavy metals? The reason I ask is some of your symptoms sound similar to mine...in bed for days, difficult to hold head up, bothered by noise, feel like death, painful spots in neck and then a few days later somewhat better but nowhere near well. I don't have the pain you describe but I have weird, dull muscle aches. I've had all the convential blood and other tests for MS and everything else under the sun...all came back negative. Traditional docs didn't help me at all. I also considered Mayo but have read all over the internet that they know nothing about toxicity. When I did a heavy metals hair analysis through Doctor's Data Lab (by Mercola's office), we found out that I have very high mercury. I've chelated once and my vision and energy has improved dramatically although not 100% and I still have many other symptoms. Ask your Environmental doc what he thinks about a hair analysis. Oh, don't do it by blood though...my blood showed normal for heavy metals, yet hair and urine showed I was in the 90th percentile. Hang in there and much luck! Love, PH > > Sue, I wish I could really describe them. They started out like > complete fatigue and I would pass out for days. That is gone. Now > I get where I almost feel like there is no oxygen in my head like I > am being strangled, I start to feel a lot of pain, any movement or > noise is painful, and I just have to go to bed and wait it out for > days until it passes. I don't sleep, it is just like lying there > feeling like death. Then I can barely walk for weeks, I can't speak > right, it is so scary. Then I start to recover and after a few > months I notice I can go out and walk around at a normal level. I > can still barely hold my head up for long. I have a ton of " tender " > spots I have found on my neck and shoulders, but are more like > severely painful spots! I do not stay in bed much anymore, I have > been able to get up. But I am very careful about my activity. > Seems sort of extreme for fibromyalgia. Does that sound at all > familiar? I am so frustrated by not knowing what it is. And the > doctors have all said they have never heard anything like it. My > MRI is tomorrow, it was sch for today and they messed up. The neuro > said it sounds like MS attacks, but even he said he is not sure. > And I am really not describing what I have read about MS. I also > have an appt with the environmental medicine center next week which > is very pricey, but they say they treat women with implant illness, > so I will let you all know what they say. My husband is driving me > crazy trying to get me to go to the mayo clinic to try to get > someone to figure it out. Several doctors said fibro, several said > it is not. I totally went off the diet and back on sugar so I could > gain some weight. I feel like crap, but don't even have the energy > to go out and get fresh food. And I did finally gain some weight > back. I forgot the rashes! I have had outbreak after outbreak, all > over my neck and jawline, the neuro said he has no idea what it is. > Another trip to another doctor is just too much. I am going to PT > twice a week, and all the other stuff, it is just ridiculous. On the > better side, I have been able to walk a lot more, stretch a bit, > have more mental clarity, and the best is not having to stay in bed > for days. I had a slight attack a few days ago but caught it in > time so I was able to minimize it. ANY body have any attacks like > this? And Sue, yes mine at one point were like panic attacks with > bad heart beating and such, but most of the doctors said it is not > anxiety or panic (and I just had very bad anxiety at my last MRI and > it is nothing like what these attacks are so I am pretty confident > it is not that). Sorry so long! Love Nan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Nan, How about addressing hormones, such as estrogen and progesterone? You may want to read (if you think you can absorb it) this e-book on natural hormone replacement therapy. He said a few things in this that caught my eye, such as: " The brain is highly sensitive to progesterone. In fact, progesterone is found in brain cells at levels twenty times higher than in the blood serum. " " Because cortisol is made by the body from progesterone, a decline in progesterone levels will result in a decline in cortisol levels as well. " " Progesterone, the " feel good " hormone, is the first hormone to decline and drops 120 times more rapidly than estrogen. " " The female hormones affect every cell in the body, including the brain. It is the female hormones which stimulate the brain to produce seratonin, dopamine, and neurohormones that elevate our moods. " Seriously, the doctors you see are not going to be intelligent enough to figure this one out, if it's the hormones. They will look at test results and lab values and dismiss them as normal if they are even close to being in range. I just posted something today called, " Patients Don't Lie--Thyroid Lab Tests Do " . You can also include other hormone tests in there as well. Nan, I'd SUGGEST trying some hormone replacement therapy, starting with progesterone....as that will help balance things if you are depleted in that or have estrogen dominance (not meaning too much estrogen, but rather, too little progesterone!) It can't hurt and it may help. You can get a progesterone cream over the counter. I use LifeFlo Progesta-care and it has definitely made me " feel good. " http://www.americasnutrition.com/progpum2ozli.html I wish you wellness. You deserve some reprieve from your suffering. But I am not convinced that the MD's you see are going to be able to fix you. I just hate to see you tossed around on this medical merry go round from hell that doctors put us on. Maybe they can find some answers...there's always that possibility, but I don't have alot of hope in them, based on what I've seen and heard over the last decade. Patty > > Sue, I wish I could really describe them. They started out like > complete fatigue and I would pass out for days. That is gone. Now > I get where I almost feel like there is no oxygen in my head like I > am being strangled, I start to feel a lot of pain, any movement or > noise is painful, and I just have to go to bed and wait it out for > days until it passes. I don't sleep, it is just like lying there > feeling like death. Then I can barely walk for weeks, I can't speak > right, it is so scary. Then I start to recover and after a few > months I notice I can go out and walk around at a normal level. I > can still barely hold my head up for long. I have a ton of " tender " > spots I have found on my neck and shoulders, but are more like > severely painful spots! I do not stay in bed much anymore, I have > been able to get up. But I am very careful about my activity. > Seems sort of extreme for fibromyalgia. Does that sound at all > familiar? I am so frustrated by not knowing what it is. And the > doctors have all said they have never heard anything like it. My > MRI is tomorrow, it was sch for today and they messed up. The neuro > said it sounds like MS attacks, but even he said he is not sure. > And I am really not describing what I have read about MS. I also > have an appt with the environmental medicine center next week which > is very pricey, but they say they treat women with implant illness, > so I will let you all know what they say. My husband is driving me > crazy trying to get me to go to the mayo clinic to try to get > someone to figure it out. Several doctors said fibro, several said > it is not. I totally went off the diet and back on sugar so I could > gain some weight. I feel like crap, but don't even have the energy > to go out and get fresh food. And I did finally gain some weight > back. I forgot the rashes! I have had outbreak after outbreak, all > over my neck and jawline, the neuro said he has no idea what it is. > Another trip to another doctor is just too much. I am going to PT > twice a week, and all the other stuff, it is just ridiculous. On the > better side, I have been able to walk a lot more, stretch a bit, > have more mental clarity, and the best is not having to stay in bed > for days. I had a slight attack a few days ago but caught it in > time so I was able to minimize it. ANY body have any attacks like > this? And Sue, yes mine at one point were like panic attacks with > bad heart beating and such, but most of the doctors said it is not > anxiety or panic (and I just had very bad anxiety at my last MRI and > it is nothing like what these attacks are so I am pretty confident > it is not that). Sorry so long! Love Nan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Nan, How about addressing hormones, such as estrogen and progesterone? You may want to read (if you think you can absorb it) this e-book on natural hormone replacement therapy. He said a few things in this that caught my eye, such as: " The brain is highly sensitive to progesterone. In fact, progesterone is found in brain cells at levels twenty times higher than in the blood serum. " " Because cortisol is made by the body from progesterone, a decline in progesterone levels will result in a decline in cortisol levels as well. " " Progesterone, the " feel good " hormone, is the first hormone to decline and drops 120 times more rapidly than estrogen. " " The female hormones affect every cell in the body, including the brain. It is the female hormones which stimulate the brain to produce seratonin, dopamine, and neurohormones that elevate our moods. " Seriously, the doctors you see are not going to be intelligent enough to figure this one out, if it's the hormones. They will look at test results and lab values and dismiss them as normal if they are even close to being in range. I just posted something today called, " Patients Don't Lie--Thyroid Lab Tests Do " . You can also include other hormone tests in there as well. Nan, I'd SUGGEST trying some hormone replacement therapy, starting with progesterone....as that will help balance things if you are depleted in that or have estrogen dominance (not meaning too much estrogen, but rather, too little progesterone!) It can't hurt and it may help. You can get a progesterone cream over the counter. I use LifeFlo Progesta-care and it has definitely made me " feel good. " http://www.americasnutrition.com/progpum2ozli.html I wish you wellness. You deserve some reprieve from your suffering. But I am not convinced that the MD's you see are going to be able to fix you. I just hate to see you tossed around on this medical merry go round from hell that doctors put us on. Maybe they can find some answers...there's always that possibility, but I don't have alot of hope in them, based on what I've seen and heard over the last decade. Patty > > Sue, I wish I could really describe them. They started out like > complete fatigue and I would pass out for days. That is gone. Now > I get where I almost feel like there is no oxygen in my head like I > am being strangled, I start to feel a lot of pain, any movement or > noise is painful, and I just have to go to bed and wait it out for > days until it passes. I don't sleep, it is just like lying there > feeling like death. Then I can barely walk for weeks, I can't speak > right, it is so scary. Then I start to recover and after a few > months I notice I can go out and walk around at a normal level. I > can still barely hold my head up for long. I have a ton of " tender " > spots I have found on my neck and shoulders, but are more like > severely painful spots! I do not stay in bed much anymore, I have > been able to get up. But I am very careful about my activity. > Seems sort of extreme for fibromyalgia. Does that sound at all > familiar? I am so frustrated by not knowing what it is. And the > doctors have all said they have never heard anything like it. My > MRI is tomorrow, it was sch for today and they messed up. The neuro > said it sounds like MS attacks, but even he said he is not sure. > And I am really not describing what I have read about MS. I also > have an appt with the environmental medicine center next week which > is very pricey, but they say they treat women with implant illness, > so I will let you all know what they say. My husband is driving me > crazy trying to get me to go to the mayo clinic to try to get > someone to figure it out. Several doctors said fibro, several said > it is not. I totally went off the diet and back on sugar so I could > gain some weight. I feel like crap, but don't even have the energy > to go out and get fresh food. And I did finally gain some weight > back. I forgot the rashes! I have had outbreak after outbreak, all > over my neck and jawline, the neuro said he has no idea what it is. > Another trip to another doctor is just too much. I am going to PT > twice a week, and all the other stuff, it is just ridiculous. On the > better side, I have been able to walk a lot more, stretch a bit, > have more mental clarity, and the best is not having to stay in bed > for days. I had a slight attack a few days ago but caught it in > time so I was able to minimize it. ANY body have any attacks like > this? And Sue, yes mine at one point were like panic attacks with > bad heart beating and such, but most of the doctors said it is not > anxiety or panic (and I just had very bad anxiety at my last MRI and > it is nothing like what these attacks are so I am pretty confident > it is not that). Sorry so long! Love Nan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Oops, here is the link to the e-book on Natural Hormone Replacement Therapy: http://www.drhotze.com/EN/free_ebooks/408.html Patty > > > > Sue, I wish I could really describe them. They started out like > > complete fatigue and I would pass out for days. That is gone. Now > > I get where I almost feel like there is no oxygen in my head like I > > am being strangled, I start to feel a lot of pain, any movement or > > noise is painful, and I just have to go to bed and wait it out for > > days until it passes. I don't sleep, it is just like lying there > > feeling like death. Then I can barely walk for weeks, I can't > speak > > right, it is so scary. Then I start to recover and after a few > > months I notice I can go out and walk around at a normal level. I > > can still barely hold my head up for long. I have a ton > of " tender " > > spots I have found on my neck and shoulders, but are more like > > severely painful spots! I do not stay in bed much anymore, I have > > been able to get up. But I am very careful about my activity. > > Seems sort of extreme for fibromyalgia. Does that sound at all > > familiar? I am so frustrated by not knowing what it is. And the > > doctors have all said they have never heard anything like it. My > > MRI is tomorrow, it was sch for today and they messed up. The > neuro > > said it sounds like MS attacks, but even he said he is not sure. > > And I am really not describing what I have read about MS. I also > > have an appt with the environmental medicine center next week which > > is very pricey, but they say they treat women with implant illness, > > so I will let you all know what they say. My husband is driving me > > crazy trying to get me to go to the mayo clinic to try to get > > someone to figure it out. Several doctors said fibro, several said > > it is not. I totally went off the diet and back on sugar so I > could > > gain some weight. I feel like crap, but don't even have the energy > > to go out and get fresh food. And I did finally gain some weight > > back. I forgot the rashes! I have had outbreak after outbreak, > all > > over my neck and jawline, the neuro said he has no idea what it > is. > > Another trip to another doctor is just too much. I am going to PT > > twice a week, and all the other stuff, it is just ridiculous. On > the > > better side, I have been able to walk a lot more, stretch a bit, > > have more mental clarity, and the best is not having to stay in bed > > for days. I had a slight attack a few days ago but caught it in > > time so I was able to minimize it. ANY body have any attacks like > > this? And Sue, yes mine at one point were like panic attacks with > > bad heart beating and such, but most of the doctors said it is not > > anxiety or panic (and I just had very bad anxiety at my last MRI > and > > it is nothing like what these attacks are so I am pretty confident > > it is not that). Sorry so long! Love Nan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Oops, here is the link to the e-book on Natural Hormone Replacement Therapy: http://www.drhotze.com/EN/free_ebooks/408.html Patty > > > > Sue, I wish I could really describe them. They started out like > > complete fatigue and I would pass out for days. That is gone. Now > > I get where I almost feel like there is no oxygen in my head like I > > am being strangled, I start to feel a lot of pain, any movement or > > noise is painful, and I just have to go to bed and wait it out for > > days until it passes. I don't sleep, it is just like lying there > > feeling like death. Then I can barely walk for weeks, I can't > speak > > right, it is so scary. Then I start to recover and after a few > > months I notice I can go out and walk around at a normal level. I > > can still barely hold my head up for long. I have a ton > of " tender " > > spots I have found on my neck and shoulders, but are more like > > severely painful spots! I do not stay in bed much anymore, I have > > been able to get up. But I am very careful about my activity. > > Seems sort of extreme for fibromyalgia. Does that sound at all > > familiar? I am so frustrated by not knowing what it is. And the > > doctors have all said they have never heard anything like it. My > > MRI is tomorrow, it was sch for today and they messed up. The > neuro > > said it sounds like MS attacks, but even he said he is not sure. > > And I am really not describing what I have read about MS. I also > > have an appt with the environmental medicine center next week which > > is very pricey, but they say they treat women with implant illness, > > so I will let you all know what they say. My husband is driving me > > crazy trying to get me to go to the mayo clinic to try to get > > someone to figure it out. Several doctors said fibro, several said > > it is not. I totally went off the diet and back on sugar so I > could > > gain some weight. I feel like crap, but don't even have the energy > > to go out and get fresh food. And I did finally gain some weight > > back. I forgot the rashes! I have had outbreak after outbreak, > all > > over my neck and jawline, the neuro said he has no idea what it > is. > > Another trip to another doctor is just too much. I am going to PT > > twice a week, and all the other stuff, it is just ridiculous. On > the > > better side, I have been able to walk a lot more, stretch a bit, > > have more mental clarity, and the best is not having to stay in bed > > for days. I had a slight attack a few days ago but caught it in > > time so I was able to minimize it. ANY body have any attacks like > > this? And Sue, yes mine at one point were like panic attacks with > > bad heart beating and such, but most of the doctors said it is not > > anxiety or panic (and I just had very bad anxiety at my last MRI > and > > it is nothing like what these attacks are so I am pretty confident > > it is not that). Sorry so long! Love Nan > > > Quote Link to comment Share on other sites More sharing options...
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