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Full body neuropathy/Vasculitis? Please help me w/ my daughter ASAP - Printable Version

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Full body neuropathy/Vasculitis? Please help me w/ my daughter ASAP - desperatemother - 03-07-2014 12:36 AM

James,

My daughter started having head pressure along with her temporal artery popping out in July of 2013. I know its a senile disease to have temporal arthritis, but then most of the ones on her head started popping out along with lots of burning/fire sensations. She couldn't use most chemically shampoos nor put a lot of pressure with towels or anything for that matter. It wasn't constant and seemed to correlate more to what she would eat, or stress. Doctors didn't listen and dismissed them as migraines and/or tension headaches. Especially since she mentions stressed. They did take the blood test for temporal arthritis anyway and it came back negative. She was referred to a psychiatrists constantly because of her history of depression and anxiety. One day she had the worst burning yet, she said her arteries felt like they were going to explode. Her heart was skipping beats. After that she could not sleep on neither one of the sides of her head without feeling like the opposite side was getting any blood, she would wake up with headaches, extreme confusion and dizziness, bloodshot eyes, etc. She was stuck to sleeping with her head straight. Then the burning and popping veins started happening in her hips. She went to the doctor yet again and complained of hip pain, he sent her to have a pelvic ultrasound which showed nothing of course. But you could visibly see the veins popping out when her hips would hurt. The burning then started in her arms for a few months. Throughout this whole time, she lost 25lbs and she was already at 110lbs for her 5'6 flame. At this point doctors kept telling her if she gained weight the pain would go away. That the pain was from everything pushing together because of no fatty protection. She then started eating anything and everything even if it would give her pain because the thought it was temporary. Not only did she just end up losing more weight at a faster rate, but she started having face, jaw, chest, back, everywhere pain- even spine and teeth/gums- but she kept insisting most of it was in her veins. She started not being able lay on neither one of her sides without the OPPOSITE side of her body's muscles hurting like they were being deprived of oxygen and feeling short of breath. You could visibly see veins popping out but doctors said it was to be expected because of how thin she is. He ended up hospitalizing her for malnutrition (which they were surprised her nutritional blood work came back subnormal) but they ran a bunch of stomach test to see why she was losing weight, including injecting IV iodine contrast to see if her stomach was pressing against before a cat scan an artery ( they were worried there was no fatty layer between) well that came out fine. But after that she woke up with a tachycardia which hasn't gone away, and complete numbness. She did tell me she fell asleep that night on her side though her blood flow problem. In the hospital she was also under a lot of stress because of the diet they had her on plus all the meds, like megace to "stimulate appetite". That was a few weeks ago that she awoke with complete numbness, and since then hasn't been able to feel. On top of all of this, she was diagnosed with Type 2 diabetes. Who knows how long she's had it, but it couldn't have been good for her nerves, especially all the potatoes and white rice she was constantly eating for calories. Now she also can't lift her arms above her head or sit crisis-crossed without tingling and arm muscle pain (through numbness). She complains of her eyesight getting darker, when her vision used to start getting dark she'd go back to only eating potatoes to help it clear up, she has a nosebleed every morning, dizziness, night sweats, she can't concentrate at all, memory problems, she says she can feel pressure on her blood vessels just with a journal in her lap, she can't sleep at night because there's no more positions where she feels like she's getting adequate blood flow, she wears ear plugs at night and says she can hear her stomach gurgle when she moves her hip, or sometimes arm or leg like it helps blood flow stagnant get through more, and when she swallows her spit it takes awhile to hear a gurgle sound (whatever that means) like nothing is working correctly-and she's going down fast. She touched something hot a week ago and her thumb is still COMPLETELY numb like the nerves aren't even regenerating. She can only eat potatoes without veins popping out/vein pain all-over inflammation. She still eats meats to survive though they all give her problems now. We're finally scheduled for a vasculitis biopsy late next weekend I'm afraid it'll come back negative since the inflammation doesn't seem to stay constant and in one place I'm also now afraid its to late. She can't even turn her neck without having problems I want to know what's the reason she can't sleep on neither side without getting blood flow and if that would be permanent. It's gotten to where its not much better on her back, she can't find a way to position at all anymore, without things being affected. Are the nerves dead? How can she tolerate food without making things even worse. (I honestly don't think she has any wiggle room for any worsening at all) - and fast. She had health problems before this to where she was able to tolerate less and less food and it just kept getting worse- She tried EVERYTHING. To make a matters worse, she can't tolerate most if not ALL supplements, they made her burning and pain worse when she could actually feel, especially herbs. And unfortunately even vitamin-c not even pure abscodic acid from multiple sources ( topioca, corn starch, corn dextrose, sago palm) nor buffered. She was able to tolerate only alma out of the herbs in little pieces until it started giving her problems, she seems to sensitive to things very quickly if she is able to tolerate I've bought very expensive and totally pure herbs and vitamins and they've all made her inflammation worse even simple vitamin-A and calcium, ext. Maybe everything causes a detox/healing reaction that her extremely weakened body can not handle. I can't believe it got to this point- when it gets to this point, do you think the nerve damage from severe vasculitus plus other inflammation is reversible? Will she ever be able to lay on her sides again, or tilt her head? Or is that pretty much permanent at this point? I don't know why her whole body went numb, she can't feel me touch her face, only that my hands are cold. She can't feel anyone pull her hair or at least it feels dull. What is there to do? Can the doctors even do anything to allow her nerves to signal ( I think that's why she needs to lay completely straight) again? Is it too late? Sorry, sorry please let me inside your knowledgeable head. I don't know what to do anymore, and I'm afraid there's nothing I can do. I'm desperate.

P.S. I don't know if this is of any significance, but her b12 blood levels read high though she does not supplement. She can not supplement because it makes her crazy stimulated and cause problems. I think she has heavy metal toxicity that it stirs up? After taking b12 5000mcgs methyl b12 is actually when the burning first started, along with digestive enzymes that contain ALA.
Sad


RE: Full body neuropathy/Vasculitis? Please help me w/ my daughter ASAP - James - 05-04-2014 10:22 PM

(03-07-2014 12:36 AM)desperatemother Wrote:  James,

My daughter started having head pressure along with her temporal artery popping out in July of 2013. I know its a senile disease to have temporal arthritis, but then most of the ones on her head started popping out along with lots of burning/fire sensations. She couldn't use most chemically shampoos nor put a lot of pressure with towels or anything for that matter. It wasn't constant and seemed to correlate more to what she would eat, or stress. Doctors didn't listen and dismissed them as migraines and/or tension headaches. Especially since she mentions stressed. They did take the blood test for temporal arthritis anyway and it came back negative. She was referred to a psychiatrists constantly because of her history of depression and anxiety. One day she had the worst burning yet, she said her arteries felt like they were going to explode. Her heart was skipping beats. After that she could not sleep on neither one of the sides of her head without feeling like the opposite side was getting any blood, she would wake up with headaches, extreme confusion and dizziness, bloodshot eyes, etc. She was stuck to sleeping with her head straight. Then the burning and popping veins started happening in her hips. She went to the doctor yet again and complained of hip pain, he sent her to have a pelvic ultrasound which showed nothing of course. But you could visibly see the veins popping out when her hips would hurt. The burning then started in her arms for a few months. Throughout this whole time, she lost 25lbs and she was already at 110lbs for her 5'6 flame. At this point doctors kept telling her if she gained weight the pain would go away. That the pain was from everything pushing together because of no fatty protection. She then started eating anything and everything even if it would give her pain because the thought it was temporary. Not only did she just end up losing more weight at a faster rate, but she started having face, jaw, chest, back, everywhere pain- even spine and teeth/gums- but she kept insisting most of it was in her veins. She started not being able lay on neither one of her sides without the OPPOSITE side of her body's muscles hurting like they were being deprived of oxygen and feeling short of breath. You could visibly see veins popping out but doctors said it was to be expected because of how thin she is. He ended up hospitalizing her for malnutrition (which they were surprised her nutritional blood work came back subnormal) but they ran a bunch of stomach test to see why she was losing weight, including injecting IV iodine contrast to see if her stomach was pressing against before a cat scan an artery ( they were worried there was no fatty layer between) well that came out fine. But after that she woke up with a tachycardia which hasn't gone away, and complete numbness. She did tell me she fell asleep that night on her side though her blood flow problem. In the hospital she was also under a lot of stress because of the diet they had her on plus all the meds, like megace to "stimulate appetite". That was a few weeks ago that she awoke with complete numbness, and since then hasn't been able to feel. On top of all of this, she was diagnosed with Type 2 diabetes. Who knows how long she's had it, but it couldn't have been good for her nerves, especially all the potatoes and white rice she was constantly eating for calories. Now she also can't lift her arms above her head or sit crisis-crossed without tingling and arm muscle pain (through numbness). She complains of her eyesight getting darker, when her vision used to start getting dark she'd go back to only eating potatoes to help it clear up, she has a nosebleed every morning, dizziness, night sweats, she can't concentrate at all, memory problems, she says she can feel pressure on her blood vessels just with a journal in her lap, she can't sleep at night because there's no more positions where she feels like she's getting adequate blood flow, she wears ear plugs at night and says she can hear her stomach gurgle when she moves her hip, or sometimes arm or leg like it helps blood flow stagnant get through more, and when she swallows her spit it takes awhile to hear a gurgle sound (whatever that means) like nothing is working correctly-and she's going down fast. She touched something hot a week ago and her thumb is still COMPLETELY numb like the nerves aren't even regenerating. She can only eat potatoes without veins popping out/vein pain all-over inflammation. She still eats meats to survive though they all give her problems now. We're finally scheduled for a vasculitis biopsy late next weekend I'm afraid it'll come back negative since the inflammation doesn't seem to stay constant and in one place I'm also now afraid its to late. She can't even turn her neck without having problems I want to know what's the reason she can't sleep on neither side without getting blood flow and if that would be permanent. It's gotten to where its not much better on her back, she can't find a way to position at all anymore, without things being affected. Are the nerves dead? How can she tolerate food without making things even worse. (I honestly don't think she has any wiggle room for any worsening at all) - and fast. She had health problems before this to where she was able to tolerate less and less food and it just kept getting worse- She tried EVERYTHING. To make a matters worse, she can't tolerate most if not ALL supplements, they made her burning and pain worse when she could actually feel, especially herbs. And unfortunately even vitamin-c not even pure abscodic acid from multiple sources ( topioca, corn starch, corn dextrose, sago palm) nor buffered. She was able to tolerate only alma out of the herbs in little pieces until it started giving her problems, she seems to sensitive to things very quickly if she is able to tolerate I've bought very expensive and totally pure herbs and vitamins and they've all made her inflammation worse even simple vitamin-A and calcium, ext. Maybe everything causes a detox/healing reaction that her extremely weakened body can not handle. I can't believe it got to this point- when it gets to this point, do you think the nerve damage from severe vasculitus plus other inflammation is reversible? Will she ever be able to lay on her sides again, or tilt her head? Or is that pretty much permanent at this point? I don't know why her whole body went numb, she can't feel me touch her face, only that my hands are cold. She can't feel anyone pull her hair or at least it feels dull. What is there to do? Can the doctors even do anything to allow her nerves to signal ( I think that's why she needs to lay completely straight) again? Is it too late? Sorry, sorry please let me inside your knowledgeable head. I don't know what to do anymore, and I'm afraid there's nothing I can do. I'm desperate.

P.S. I don't know if this is of any significance, but her b12 blood levels read high though she does not supplement. She can not supplement because it makes her crazy stimulated and cause problems. I think she has heavy metal toxicity that it stirs up? After taking b12 5000mcgs methyl b12 is actually when the burning first started, along with digestive enzymes that contain ALA.
Sad

This sounds a lot more like some form of neuropathy. There are many forms of neuropathy and different causes.

Did anything show up abnormal in her lab tests such as abnormal white blood cell counts, CRP or SED rate? Did any of the doctors happen to do an MRI?