Aa
continuing burning sensation--at wits end with pain
I am female and 53. On 2/12/02 I suffered intense burning, some numbness & weakness on left side from scalp to foot. exams since then shows weakness on left side. Had MRI 2 weeks after that and did show possible two mini-strokes in past. Current Dr. said no big deal.
3/8/ I woke to tremors in head and neck, nausea, migrating severe sharp pains and burning patches, mostly in left side but some in right. Went to VA and they counseled me about psych meds but saw no doctor.
on 3/9 went back with weakness in left arm and burning patches in body. After all day there (included CT scan) and was told I was OK and go home. Was called by my counselor who told me they felt I had a TIA, but again with VA no follow up.
since episode on 2/12 I have sharp burning sensation, mostly on left side, but also some patches on right. it flucuates in intensity becoming more frequent and happens every day now.
The VA is still trying to blame everything on FMS and psychiatric problems saying it is somatic but many of the problems i believe are not somatic as recent MRI, eye exam(atrophy both optic nerves & cataracts, etc.) show there are continuing problems.
1) what can cause the burning sensation in body along nerve paths?
2) why do these sensations migrates to different parts of the body or flucuates?
3) could this be just residue of stroke-like symptoms on 2/12?
4) what could flare up the nerves in the body like this (don't have diabetis, nor drink, or do drugs)?
5) could episode on 2/12 started some kind of flare up in the nerves?
thank you very much.
3/8/ I woke to tremors in head and neck, nausea, migrating severe sharp pains and burning patches, mostly in left side but some in right. Went to VA and they counseled me about psych meds but saw no doctor.
on 3/9 went back with weakness in left arm and burning patches in body. After all day there (included CT scan) and was told I was OK and go home. Was called by my counselor who told me they felt I had a TIA, but again with VA no follow up.
since episode on 2/12 I have sharp burning sensation, mostly on left side, but also some patches on right. it flucuates in intensity becoming more frequent and happens every day now.
The VA is still trying to blame everything on FMS and psychiatric problems saying it is somatic but many of the problems i believe are not somatic as recent MRI, eye exam(atrophy both optic nerves & cataracts, etc.) show there are continuing problems.
1) what can cause the burning sensation in body along nerve paths?
2) why do these sensations migrates to different parts of the body or flucuates?
3) could this be just residue of stroke-like symptoms on 2/12?
4) what could flare up the nerves in the body like this (don't have diabetis, nor drink, or do drugs)?
5) could episode on 2/12 started some kind of flare up in the nerves?
thank you very much.
Hi Patches great to hear from you again! Sorry things aren't going too well for you I hope you get answers soon.I have finally gotten a dx, it seems I have a tumour on my spine at neck level. I'm waiting to get it "removed". I think i'm pretty lucky as at least I know what i'm dealing with. Keep your chin up Patches you have a lot of people rooting for you! Take care and keep on posting!! _________________________________________________________________ Alfie, Iread your posting with great interest, youv'e obviously had a lot to deal with too! You obviously have a great deal of courage and guys like you really help us ,as you show that if you keep going you will "get there"! Good luck to you and thankyou! If I can get through my "crisis" and come out as strong as you seem I'll do ok!! Keep well my friend, ANNE
I'm not sure if my story will help - but you never know.
I have a spinal AVM-F- aterio-venous malformation fistula. Arteries and veins are supposed to do their "communicating" at the capillary level and not at the large-size level for reasons of blood pressure - high in arteries; low in veins. An AVM is where a large artery and a large vein connect, by-passing the capillary level. Not good. This causes the spine to swell, which in turn caused my symptoms. Evidently, only 100 cases are diagnosed a year. Mine was caught at an early stage - many people are diagnosed too late and end up paralyzed to some degree! I was lucky in my city - the neurologist who landed me as his patient has written a chapter on this and the neurology radiologist had recently read-up on how to do an MRI to find it!
It started with very cold toes and feet which would not warm up. They felt like when you play out in the cold for a long time - and when you go in to warm up, you get that "burning sensation" as you thaw? I had that all the time. Then, my left leg was not as powerful as it normally was. It didn't hurt, I could just tell it was different. I described it as, remember in your school days, some kid would come up behind you and knock your knee in from behind with theirs? Well, not the feeling of it being bent, but the few seconds of weakness following...that's what my leg had all the time.
Eventually both legs became weak, and my rear end felt numb/cold - as if I had been sitting on cold stone for a long time - only it was like that all the time. And, yes, it affected urination and bowel movements.
I cried a lot, thinking MS or myasthenias gravis, or, even Lupus, for I had an aunt who died from Lupus. All tests for these things said no. Also, neurology tests all came back normal, too. No diabetes, no circulatory problems, nothing.
Finally, a first MRI was done and they at first thought a possible tumor on my spine. The next day they decided on a second MRI with dye and were able to see the AVM.
An angiogram was performed, through which they shot "medical superglue" to the intersection of the artery and vein. This was done only when they were positive they could do it perfectly, for if the glue was not done right - they could have paralyzed me. The angiogram/embolization (superglue) was performed March 19, approximately one month after beginning going to the doctor about my symptoms. I"m a teacher, so I used my spring break time to recoup, and returned to teaching April 8th.
After I returned home from the hospital, I immediately went online to read up more on Spinal AVMs (there are also brain AVMs). I'm a very lucky lady, evidently. AVMs are associated with aneuryisms. Many people are now wheel-chair bound. I walk with a limp and I have that burning sensation you mention. My toes still get cold, but prior to the angiogram, I had gotten to the point where I could only walk or stand for 10 -15 min. at a time, before collapsing in bed or on a chair. I'm definitely better than that, now!
Now, with every step I take - I feel that "buzzing-burning" in my feet and legs. I've also had sporadic sensations of an "electrical zap" in my left leg...not really visible, but noticeable to me. I read online that it could take up to three months for spine swelling to go down. I'm hoping my buzzing/burning will subside with it. Also, I was told the angiogram/superglue procedure could result in one of three outcomes: arrest my symptoms at the point they were before the procedure (obviously not the case), cure it 100%, or cure it to a percentage. I guess untill the spine swelling is down, I won't know for sure.
I'm scheduled for yet another MRI May 14, the doctor said get used to them - I'll be having several in my lifetime, now. For this condition can reappear - the artery or vein could "detour" and do it again. Oh joy.
One more thing. A colleague who had breast cancer and had her lymph nodes removed under an arm - when I told her about this burning sensation I have now - she pointed out that after the under arm surgery, her upper arm was numb for a time, the underneath part. Eventually, the nerves started coming back to "life" and she had the same feeling - that "electrical zap" feeling. So, with that, I'm thinking positive that I'm still healing and I'll be ok.
What made me add to this forum and this topic is the fact that AVMs are pretty "rare" and many doctors never even see one case in their whole career. I was just lucky to be in the right place at the right time - and, I think, to be very "in tune" with my body - knowing things weren't right.
Maybe this this all has nothing to do with your situation, but maybe someone else will recognize similar symptoms and it will relate to them!
Thanks for listening.
Alfie
I have a spinal AVM-F- aterio-venous malformation fistula. Arteries and veins are supposed to do their "communicating" at the capillary level and not at the large-size level for reasons of blood pressure - high in arteries; low in veins. An AVM is where a large artery and a large vein connect, by-passing the capillary level. Not good. This causes the spine to swell, which in turn caused my symptoms. Evidently, only 100 cases are diagnosed a year. Mine was caught at an early stage - many people are diagnosed too late and end up paralyzed to some degree! I was lucky in my city - the neurologist who landed me as his patient has written a chapter on this and the neurology radiologist had recently read-up on how to do an MRI to find it!
It started with very cold toes and feet which would not warm up. They felt like when you play out in the cold for a long time - and when you go in to warm up, you get that "burning sensation" as you thaw? I had that all the time. Then, my left leg was not as powerful as it normally was. It didn't hurt, I could just tell it was different. I described it as, remember in your school days, some kid would come up behind you and knock your knee in from behind with theirs? Well, not the feeling of it being bent, but the few seconds of weakness following...that's what my leg had all the time.
Eventually both legs became weak, and my rear end felt numb/cold - as if I had been sitting on cold stone for a long time - only it was like that all the time. And, yes, it affected urination and bowel movements.
I cried a lot, thinking MS or myasthenias gravis, or, even Lupus, for I had an aunt who died from Lupus. All tests for these things said no. Also, neurology tests all came back normal, too. No diabetes, no circulatory problems, nothing.
Finally, a first MRI was done and they at first thought a possible tumor on my spine. The next day they decided on a second MRI with dye and were able to see the AVM.
An angiogram was performed, through which they shot "medical superglue" to the intersection of the artery and vein. This was done only when they were positive they could do it perfectly, for if the glue was not done right - they could have paralyzed me. The angiogram/embolization (superglue) was performed March 19, approximately one month after beginning going to the doctor about my symptoms. I"m a teacher, so I used my spring break time to recoup, and returned to teaching April 8th.
After I returned home from the hospital, I immediately went online to read up more on Spinal AVMs (there are also brain AVMs). I'm a very lucky lady, evidently. AVMs are associated with aneuryisms. Many people are now wheel-chair bound. I walk with a limp and I have that burning sensation you mention. My toes still get cold, but prior to the angiogram, I had gotten to the point where I could only walk or stand for 10 -15 min. at a time, before collapsing in bed or on a chair. I'm definitely better than that, now!
Now, with every step I take - I feel that "buzzing-burning" in my feet and legs. I've also had sporadic sensations of an "electrical zap" in my left leg...not really visible, but noticeable to me. I read online that it could take up to three months for spine swelling to go down. I'm hoping my buzzing/burning will subside with it. Also, I was told the angiogram/superglue procedure could result in one of three outcomes: arrest my symptoms at the point they were before the procedure (obviously not the case), cure it 100%, or cure it to a percentage. I guess untill the spine swelling is down, I won't know for sure.
I'm scheduled for yet another MRI May 14, the doctor said get used to them - I'll be having several in my lifetime, now. For this condition can reappear - the artery or vein could "detour" and do it again. Oh joy.
One more thing. A colleague who had breast cancer and had her lymph nodes removed under an arm - when I told her about this burning sensation I have now - she pointed out that after the under arm surgery, her upper arm was numb for a time, the underneath part. Eventually, the nerves started coming back to "life" and she had the same feeling - that "electrical zap" feeling. So, with that, I'm thinking positive that I'm still healing and I'll be ok.
What made me add to this forum and this topic is the fact that AVMs are pretty "rare" and many doctors never even see one case in their whole career. I was just lucky to be in the right place at the right time - and, I think, to be very "in tune" with my body - knowing things weren't right.
Maybe this this all has nothing to do with your situation, but maybe someone else will recognize similar symptoms and it will relate to them!
Thanks for listening.
Alfie
thanks again for all your support. I have been continously struggling with the VA since last posting. It seems the easiest way to discredit someone is to label them psychosomatic, a mental case, or somehow blame us for not their not being able to figure out what is wrong with us. I have been very depressed (it did not help reading what that one person said to me) and finally wrote to head of VA. Not much good that has done as still fighting with about 'real' cause of my medical problems. They pretty much have told me that if I got such good care in WYomihg then I should go back there or if I stay here it might be good if I seek outside (the VA) medical help.
Lynda
Lynda
Hi Patches , haven't seen you posting for a while . How are you ? Hpoe that NED hasn't put you off I liked reading your posts . You make a lot of sense to some of us ! Keep well warmest regards ANNE
i am 29---- it is rough for me. since 1994, i have been seeing psychiatrists (the current one for four years)-- and yes, at times my anxiety presents as physical symptoms. i have been very ill lately... exhausted, painful popping behind my left eye, horrible nightmares, periods that last 30 days +, and no one will give me the time of day, because when the specialists speak w/ my family doctor, she says i have a history of somatoform pain!!!!!!!! i cannot even get a CAT SCAN or an MRI... so i changed family doctors (after being w/ the same woman for 2 years), and the new doctor called my old doctor w/o my permission. needless to say, he diagnosed me w/ 300.0 that is.... anxiety NOS----- not otherwise specified.
the truth is, you mention to a doctor that you see a shrink-- and you are already labeled, defined and diagnosed before the first test is done---- if it is done at all.
the truth is, you mention to a doctor that you see a shrink-- and you are already labeled, defined and diagnosed before the first test is done---- if it is done at all.
Dear all,
I would like to emphasize the fact that we overestimate physicians! People living in 2090 will laugh about medical treatment in the beginning of this century. It is not solely to blame the doctors, it is just reality.
I have worked for an ultrasound company producing echo scanners. I am an engineer and met many arrogant doctors all over the world who even don't know how to operate their instrument or to get the best out of it. They don't read the manual. Instead they are barking at people that their equipment is no good!
I have met doctors who were well-respected by their colleagues, but not because of their faked knowledge but because those doctors had a big mouth! Believe me, we have too much respect for doctors. Fortunately this is changing. Although old people are reluctant with arguing with doctors, young people do.
I had a bad experience with an orthopedist in Holland. He let me undress and left me half an hour alone, naked in the room. He complained a lot and was irritated I visited him on my own initiative. He simply didn't listen to what I ha to say.
When back in the waiting room, I told him loudly that he should take a course on social behaviour and all waiting patients applaused and raised their thums up! He was a real jerk and definitely not commited to help people.
It is as with teachers. Only 20% are good and devoted, the remaining just makes a living out of it.
I worked at the technical department of a hospital and knew my manager was afraid to be hospitalised himslef. He knew how much goes wrong every day!!
Many doctors don't learn in practice because they don't use feedback! If one doesn't return after a visit, the doctor believes the problem is solved but it may very well be that the patient is discouraged by the disappointments of not getting the right help.
How many doctors inform whether medicines helped? You see, there is no follow up.
As a technician, I have learned how to approach a technical problem but sometimes the standard procedures won't work. I don't give up and try it from a different, maybe unique, point of view until the problem is solved.
It seems to me that doctors in Holland just follow the procedures and give up a patient if they have ruled out most common diseases. They do not approach the problem form a unique point of view!
Why? Maybe because they do not have the time. Waiting lists in Holland are very long.
Investigation of rare cases is probably not interesting from the commercial point of view.
I am surprised that so many patients share so many symptoms on the Brain Tal Community site of Harvard and doctors not having a glue! There should be diagnostic centers for such cases where research is done but it is probably not commercially interesting!
So, that was my grief. If anyone is interested in my symptoms, please refer to http://neuro-mancer.mgh.harvard.edu/ubb/Forum1/HTML/003352.html
By the way, a reply for DELEMOSGAL who probably wanted to post something new:
I have the light burning sensation and tingling in my feet too. Indeed it bothers most when resting.
Also my GP recommended anti-depressants. I tried zoloft, deroxat and another but without result. The latter even aggrevated the symptoms. Be careful with anti-depressants. Although they can promote sleep, they can also disturb sleep!
Wishing you all a good Easter!
Rody
I would like to emphasize the fact that we overestimate physicians! People living in 2090 will laugh about medical treatment in the beginning of this century. It is not solely to blame the doctors, it is just reality.
I have worked for an ultrasound company producing echo scanners. I am an engineer and met many arrogant doctors all over the world who even don't know how to operate their instrument or to get the best out of it. They don't read the manual. Instead they are barking at people that their equipment is no good!
I have met doctors who were well-respected by their colleagues, but not because of their faked knowledge but because those doctors had a big mouth! Believe me, we have too much respect for doctors. Fortunately this is changing. Although old people are reluctant with arguing with doctors, young people do.
I had a bad experience with an orthopedist in Holland. He let me undress and left me half an hour alone, naked in the room. He complained a lot and was irritated I visited him on my own initiative. He simply didn't listen to what I ha to say.
When back in the waiting room, I told him loudly that he should take a course on social behaviour and all waiting patients applaused and raised their thums up! He was a real jerk and definitely not commited to help people.
It is as with teachers. Only 20% are good and devoted, the remaining just makes a living out of it.
I worked at the technical department of a hospital and knew my manager was afraid to be hospitalised himslef. He knew how much goes wrong every day!!
Many doctors don't learn in practice because they don't use feedback! If one doesn't return after a visit, the doctor believes the problem is solved but it may very well be that the patient is discouraged by the disappointments of not getting the right help.
How many doctors inform whether medicines helped? You see, there is no follow up.
As a technician, I have learned how to approach a technical problem but sometimes the standard procedures won't work. I don't give up and try it from a different, maybe unique, point of view until the problem is solved.
It seems to me that doctors in Holland just follow the procedures and give up a patient if they have ruled out most common diseases. They do not approach the problem form a unique point of view!
Why? Maybe because they do not have the time. Waiting lists in Holland are very long.
Investigation of rare cases is probably not interesting from the commercial point of view.
I am surprised that so many patients share so many symptoms on the Brain Tal Community site of Harvard and doctors not having a glue! There should be diagnostic centers for such cases where research is done but it is probably not commercially interesting!
So, that was my grief. If anyone is interested in my symptoms, please refer to http://neuro-mancer.mgh.harvard.edu/ubb/Forum1/HTML/003352.html
By the way, a reply for DELEMOSGAL who probably wanted to post something new:
I have the light burning sensation and tingling in my feet too. Indeed it bothers most when resting.
Also my GP recommended anti-depressants. I tried zoloft, deroxat and another but without result. The latter even aggrevated the symptoms. Be careful with anti-depressants. Although they can promote sleep, they can also disturb sleep!
Wishing you all a good Easter!
Rody
***@****
I've complained to my Oncologist about burning pain on the left side of my body, from the bottom of my feet to my shoulder. My complaints fell on deaf ears because in my medical history, I've stated that I've seen a therapist but for another matter, nothing to do with pain. So I was labeled. After over a year and a few blood test which is done every three months, my doc notice that my numbers were rising and finally believe that the burning pain exist and sent me to a Neurologist to treat me for Neuropathic pain. EMG was done and the doctor who did the test advised for a skin biopsy to rule out small fiber pathology. Now I'm recieving Neurontin 2400 mgs aday and for pain Duragesic 50 pain patch. Now my complaints are listen to and scheduled for different tests. After reading a few of the postings I see that I'm not the only one who is labeled before they are diagnosed with an illness. Now the best thing to do is to keep a copy of all of your medical records including tests.
Painful Left.
Painful Left.
Patches.....do you have an email address? I am going through much the same thing as you.....
I have no Insurance and now owe about 7000.00....tests they have done trying to find out what the problem is.
Mine is also mostly on the left side but do move around. It started in Oct. and I have it everyday. Somedays its not as bad as others.
Thanks.
I have no Insurance and now owe about 7000.00....tests they have done trying to find out what the problem is.
Mine is also mostly on the left side but do move around. It started in Oct. and I have it everyday. Somedays its not as bad as others.
Thanks.
I feel for patches, she's having some sort of problem and I get the feeling her doctors at the VA hospital have labeled her psychiatric and no longer take her seriously. Unfortunately, there are a lot of people out there who have symptoms but no diagnosis and doctors just don't take the time to figure it out. When a doctor doesn't know he (a lot of them, not all) blames the patient. Why doesn't he just admit that he DOESN'T KNOW! I think a big part of the problem is that they must rush their patients through as they only have a few minutes alloted for each one. There's not enough time to listen to the complaints and do a thorough investigation. Get this...my husband just had carpal tunnel surgery on both hands. I was there when he took the stitches out of the second hand. He had his little dictator machine and before even asking my husband any questions was already dictating his notes. He started saying the symptoms had resolved since the surgery but then stopped himself to ask my husband if they HAD resolved (they had). I myself had pain in my hands, my family doctor referred me to an orthopedic doctor. I was sent to hand therapy for tendonitis before any x-rays or any tests were taken. I went 3 times a week for a month with no improvement. Went back to the doctor who ordered a bone scan (still no x-ray which would have been cheap compared to a month of therapy and bone scan). The bone scan showed severe arthritis so then I finally had an xray which confirmed arthritis. Then blood tests were ordered and I had a positive ANA and elevated sed rate. So without any treatment I was put on a waiting list for the rhuematologist. I waited 3 months. Then I was tested extensively for lupus. No lupus, just arthritis and was told my family doctor could take care of me. He prescribed viox. I get the feeling these doctors like to send their patients on goose chases so lots of their friends can reap the financial rewards. Well, that's the end of my ranting.
the only mistake I made about the first nasty comment was to respond. Other than that, I feel I have been supported by so many of you and thank you very much.
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thanks, christie,
It is hard not to be caught up in new symptoms that could be life threatening and little to no answers. The doctor did respond to the one sided symptoms that i have had and also got verification from person at VA they thought I had a TIA a week and a half ago. The difference about my MRI is that all prior ones had no abnormalities and that in itself as alerted several medical people to my possible mini-strokes. The good doctor here also alerted me to homocysteine test which I did have done and my level was very high...45.9 where normal is below 12. The higher the level the more risk of strokes and heart attacks, plus it gives us dementia type symptoms and this is being treated by my brother who is naturopath as cannot get help from the VA. There is strong evidence that something is going on for the simple fact that I now have atrophy in both optic nerves, stroke-like symptoms, orthostatic changes in heart to include rapid heart beat, chest pains, etc; and so on, and these have been documented as more recent changes.
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thanks again, Concerned lady
1) How true that most medical that I have been through look at simple blood tests to see what may be wrong and many of us have normal blood test. We ae treated for our symptoms instead of their looking for the causes.
2) the sad fact is whether it is insurance or VA they tend to keep the tests down because it cost money but that should be the last thing they do in most of our cases;
3) I know for a fact the governmentis often sick as far as regulations of medications, medical treatment, etc. Everyone wants to spend less money and make greater profit at the expense of many of us;
4) also many of us do not know or understand some of the serious side effects we can get from medicine and a search on the Internet will often show a few when in reality there can be many depending on a person's own chemical makeup.I have also found it to be true that many do not realize the side effect of acid reducing drugs is that, like you said,
5) Braintalk is a great place to go but also want to say that it is also a forum where nasty comments, angry behavior should not be allowed. We are all searching for answers as so many of us do not have them. It is true that everything has causes. One can not just believe our bodies fall apart because there is nothing wrong?We all want to be well and healthy, and there is nothing wrong with us for seeking answers or treatment from doctors (and others) for that peace of mind.
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thanks, tamster
yes and other products as well. I just read an intersting article about SAMe which my brother wanted me to take. If one does not take it along with B12, and B6 (which I do have from him) it can cause the homocysteine levels to rise. This toxic by-product causes everything from strokes to heart attacks to difficulty in thinking.
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thanks, TerryLynn
I appreciate your kind words. You are so right about the VA and their treatment of me. It is rathe hard to be labeled when that is not the problem. I do not know of anyone who is not depressed because they are sick. it is just a by-product of not having the control we did when we were well. It is not just the VA because other doctors do the same thing. Not listening to patients, not caring enough to go the extra mile, etc.
The best doctor I had was years ago who had the courage to say he did not know what was wrong and at the same time, believed me and knew there was...he just did not know exactly, at that time, what it was. How true it is about your husband and his recent surgery and the doctor's response and how sad that you had to wait all that time to get a diagnosis. Then they wonder why we get frustrated.
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thanks so very much to all of you for support as that has really helped me to get through the comments that were not necessary. I try to be kind and considerate to others, I do not question their stating they are having problems, and sure would not get into diagnosing someone else as what is the cause of their problems. Do take care all of you and thanks ever so much again.
---------------------------------------------------------------
thanks, christie,
It is hard not to be caught up in new symptoms that could be life threatening and little to no answers. The doctor did respond to the one sided symptoms that i have had and also got verification from person at VA they thought I had a TIA a week and a half ago. The difference about my MRI is that all prior ones had no abnormalities and that in itself as alerted several medical people to my possible mini-strokes. The good doctor here also alerted me to homocysteine test which I did have done and my level was very high...45.9 where normal is below 12. The higher the level the more risk of strokes and heart attacks, plus it gives us dementia type symptoms and this is being treated by my brother who is naturopath as cannot get help from the VA. There is strong evidence that something is going on for the simple fact that I now have atrophy in both optic nerves, stroke-like symptoms, orthostatic changes in heart to include rapid heart beat, chest pains, etc; and so on, and these have been documented as more recent changes.
----------------------------------------------------------------
thanks again, Concerned lady
1) How true that most medical that I have been through look at simple blood tests to see what may be wrong and many of us have normal blood test. We ae treated for our symptoms instead of their looking for the causes.
2) the sad fact is whether it is insurance or VA they tend to keep the tests down because it cost money but that should be the last thing they do in most of our cases;
3) I know for a fact the governmentis often sick as far as regulations of medications, medical treatment, etc. Everyone wants to spend less money and make greater profit at the expense of many of us;
4) also many of us do not know or understand some of the serious side effects we can get from medicine and a search on the Internet will often show a few when in reality there can be many depending on a person's own chemical makeup.I have also found it to be true that many do not realize the side effect of acid reducing drugs is that, like you said,
5) Braintalk is a great place to go but also want to say that it is also a forum where nasty comments, angry behavior should not be allowed. We are all searching for answers as so many of us do not have them. It is true that everything has causes. One can not just believe our bodies fall apart because there is nothing wrong?We all want to be well and healthy, and there is nothing wrong with us for seeking answers or treatment from doctors (and others) for that peace of mind.
----------------------------------------------------------------
thanks, tamster
yes and other products as well. I just read an intersting article about SAMe which my brother wanted me to take. If one does not take it along with B12, and B6 (which I do have from him) it can cause the homocysteine levels to rise. This toxic by-product causes everything from strokes to heart attacks to difficulty in thinking.
-----------------------------------------------------------------
thanks, TerryLynn
I appreciate your kind words. You are so right about the VA and their treatment of me. It is rathe hard to be labeled when that is not the problem. I do not know of anyone who is not depressed because they are sick. it is just a by-product of not having the control we did when we were well. It is not just the VA because other doctors do the same thing. Not listening to patients, not caring enough to go the extra mile, etc.
The best doctor I had was years ago who had the courage to say he did not know what was wrong and at the same time, believed me and knew there was...he just did not know exactly, at that time, what it was. How true it is about your husband and his recent surgery and the doctor's response and how sad that you had to wait all that time to get a diagnosis. Then they wonder why we get frustrated.
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thanks so very much to all of you for support as that has really helped me to get through the comments that were not necessary. I try to be kind and considerate to others, I do not question their stating they are having problems, and sure would not get into diagnosing someone else as what is the cause of their problems. Do take care all of you and thanks ever so much again.
Dear Patches,
Stay on the internet. Don't worry about the previous comment. I don't believe that your symptoms are psychosomatic at all. You have plenty of evidence of physical problems, from chemical toxicities, to Vitamin B 12 deficiency, and others.
What does your brother think of "Chelation Therapy" 9oral, rather than intravenous), as a possible help for your situation?
Good luck to you and to everyone!
Sincerely, Concerned lady
http://cantbreathesuspectvcd.com
Stay on the internet. Don't worry about the previous comment. I don't believe that your symptoms are psychosomatic at all. You have plenty of evidence of physical problems, from chemical toxicities, to Vitamin B 12 deficiency, and others.
What does your brother think of "Chelation Therapy" 9oral, rather than intravenous), as a possible help for your situation?
Good luck to you and to everyone!
Sincerely, Concerned lady
http://cantbreathesuspectvcd.com
JXL, you called me "OVERconcerned lady"! You are probably right.
Actually, that's a pretty nifty "handle" for me! I am VERY concerned with:
1) our SICK medical system that treats SYMPTOMS instead of looking for, finding, and treating the CAUSES of the symptoms,
2) our SICK insurance system that is mostly out for their own PROFITS, at the expense of their customers' health & lives,
3) our SICK governmental "protective" (who are they really protecting?!) agencies like the FDA (Food & Drug Administration), that is in BED with drug companies and dangerous chemical companies, and the EPA (Environmental Protection Agency) that has had its own SICK BUILDINGS harming THEIR OWN EPA EMPLOYEES!
4) the SICK collusion between the FDA & drug companies, hiding behind the ridiculous "SMOKESCREEN" of "risk/benefit ratio" justification of selling killer drugs, having killer side effects, and questionable "benefits"
--like thalidomide,
vaccinations,
diet pill combinations,
"statin" drugs to lower cholesterol, which is needed to re-myelinate any de-myelinated nerve cells,
acid blocking gastric reflux (and anti-ulcer) drugs, that prevent the absorption of Vitamin B 12, B complex, calcium, other minerals and trace minerals, preventing the breakdown/digestion of proteins into amino acids, all leading to NERVE DAMAGE/PERIPHERAL NEUROPATHY, AND LATER, CENTRAL NERVOUS SYSTEM DAMAGE/BRAIN & SPINAL CORD, etc.),
5) For more info on all the above, go to the PN (Peripheral Neuropathy) forum over at http://www.braintalk.org
JXL, what are the neurologicl problems that you are looking to cure, by being on this board? Have you been told by docs to forget it, that it's all in your head, and there are no problems?
If so, it could have been true, but then again, most (there are a FEW notable exceptions) docs are either too brainwashed by their medical books and the AMA (American Medical Association), or too scared of their hospital politics & turf issues, or too lazy, or uncaring, or not interested in taking on a challenging case, to do the hard "Sherlock Holmes" medical detective work, to help one figure out what the heck one has!
EVERYTHING HAS ITS CAUSES. JIGSAW PUZZLES HAVE PIECES (CLUES).
Good luck to all! Keep on keepin' on!
And look into HOLISTIC HEALTH, while looking for better medical care of the "allopathic" type.
Sincerely, Concerned lady
http://cantbreathesuspectvcd.com
***@****
Actually, that's a pretty nifty "handle" for me! I am VERY concerned with:
1) our SICK medical system that treats SYMPTOMS instead of looking for, finding, and treating the CAUSES of the symptoms,
2) our SICK insurance system that is mostly out for their own PROFITS, at the expense of their customers' health & lives,
3) our SICK governmental "protective" (who are they really protecting?!) agencies like the FDA (Food & Drug Administration), that is in BED with drug companies and dangerous chemical companies, and the EPA (Environmental Protection Agency) that has had its own SICK BUILDINGS harming THEIR OWN EPA EMPLOYEES!
4) the SICK collusion between the FDA & drug companies, hiding behind the ridiculous "SMOKESCREEN" of "risk/benefit ratio" justification of selling killer drugs, having killer side effects, and questionable "benefits"
--like thalidomide,
vaccinations,
diet pill combinations,
"statin" drugs to lower cholesterol, which is needed to re-myelinate any de-myelinated nerve cells,
acid blocking gastric reflux (and anti-ulcer) drugs, that prevent the absorption of Vitamin B 12, B complex, calcium, other minerals and trace minerals, preventing the breakdown/digestion of proteins into amino acids, all leading to NERVE DAMAGE/PERIPHERAL NEUROPATHY, AND LATER, CENTRAL NERVOUS SYSTEM DAMAGE/BRAIN & SPINAL CORD, etc.),
5) For more info on all the above, go to the PN (Peripheral Neuropathy) forum over at http://www.braintalk.org
JXL, what are the neurologicl problems that you are looking to cure, by being on this board? Have you been told by docs to forget it, that it's all in your head, and there are no problems?
If so, it could have been true, but then again, most (there are a FEW notable exceptions) docs are either too brainwashed by their medical books and the AMA (American Medical Association), or too scared of their hospital politics & turf issues, or too lazy, or uncaring, or not interested in taking on a challenging case, to do the hard "Sherlock Holmes" medical detective work, to help one figure out what the heck one has!
EVERYTHING HAS ITS CAUSES. JIGSAW PUZZLES HAVE PIECES (CLUES).
Good luck to all! Keep on keepin' on!
And look into HOLISTIC HEALTH, while looking for better medical care of the "allopathic" type.
Sincerely, Concerned lady
http://cantbreathesuspectvcd.com
***@****
sorry you feel that way, JXL. I am not overly concerned about your commments.....we all have to deal with something, even the ignorance of others. Perhaps you should try to post early mornings so you can get on. You just have to be persistent and keep trying.
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Concerned lady, thanks very, very much. I try to remember that everyone comes from a different place and sometimes they cannot withhold nasty or angry remarks. It is easy if we don't feel good but that does not excuse rudeness.
I know for a fact that my symptoms are not psychosomatic for the simple reason that eventually the problems show up on some test. We are not all gifted (tongue in cheek) with bizarre symptoms.
My brother does not think that I am healthy at the moment for Chelation therapy and is trying to get my body up to handling it but thanks for the thought.
----------------------------------------------------------------
thanks, zoltanvarga,
we all have things we have to deal with and we all seek answers. I have often found those who have not accepted their disability to have anger or bitterness issues. We have to stay within our limitations but that does not mean we cannot express ourselves or be concerned about new issues that may be popping up for all of us. I have found that if I get on early in the morning and keep trying that I can post which means anyone else can if they are patient enough. It serves no purpose to attack or alienate others if we are having difficulty in dealing with our own issues. Thanks, Ann, ever so much.
----------------------------------------------------------------
Concerned lady, thanks very, very much. I try to remember that everyone comes from a different place and sometimes they cannot withhold nasty or angry remarks. It is easy if we don't feel good but that does not excuse rudeness.
I know for a fact that my symptoms are not psychosomatic for the simple reason that eventually the problems show up on some test. We are not all gifted (tongue in cheek) with bizarre symptoms.
My brother does not think that I am healthy at the moment for Chelation therapy and is trying to get my body up to handling it but thanks for the thought.
----------------------------------------------------------------
thanks, zoltanvarga,
we all have things we have to deal with and we all seek answers. I have often found those who have not accepted their disability to have anger or bitterness issues. We have to stay within our limitations but that does not mean we cannot express ourselves or be concerned about new issues that may be popping up for all of us. I have found that if I get on early in the morning and keep trying that I can post which means anyone else can if they are patient enough. It serves no purpose to attack or alienate others if we are having difficulty in dealing with our own issues. Thanks, Ann, ever so much.
I agree with concerned lady don't listen to jxl he obviously has never suffered from any of our worrying symptoms. People like him make me so mad!!If posting on this forum helps then you go girl!! Warmest regards Anne By the way jxl if pathces' postinga annoy you so much stay away from them she's hurting no one & setting her own mind at ease so lay off!!!
If I am active and walking my feet do not bother me too much, but if I am sitting still or lying in bed I get tingling and my toes cramp all the time. I was told I had something called poly-neuropathy. The doctor gave me some kind of anti-depressant and said its not that I am depressed but it also works on the nerves in the body. It has not helped and I am tired of my feet feeling this way. Has anyone had this problem?
9 posts already this year. No i cant change my opinion on this one. Thats 9 posts on a site thats very difficult to post on. So i bet you've probaly tried 900 times.IMO you have mis-used this forum. Sorry, but thats my opinion. Im not gonna argue w/ you and "overconcerned lady" anymore. Dont waste a reply because i wont be back to see it. I gonna go live my life and be happy that im healthy, perhaps you should do the same...bye.
I have been diagnosed in past so that statment is mote. I am sorry that you feel the way that you do but doubt that 'a lot of others' would agree with you, more like agree with me. This site is not people looking for diagnosis but those who would like answers to medical problems they are dealing with. I am sorry that you feel the way you do, but to be honest, I am not affected by your attitude. I would like to think that you are just frustrated as I am about finding some answers and that you have chosen to put me down because of that frustation. This is not the place to do that as this clinic forum is for those seek answers and not to be attacked by someone else. Thanks but I am not offended, just appauled that on a wonderful site like this people are subjected to nasty statments or attitudes.
Sorry to offend you Patches, but i bet a WHOLE lot of people read my post and agreed you post far to often.It seems to me (maybe im wrong) that this site is more geared towards people who have already been dx and are seeking advice reguarding thier condition.In other words....you are not DX and the docs here certainly cannot dx you on the internet so why bother posting. The questions you are asking should be answered by your pcp.
Hi
JXL, I know basically what you are trying to say, but I think you put it rather strongly and rudely. Patches is looking for help. Sometimes just talking to a community of people (even internet people!) is therapuetic.
Patches, I am sorry you are having symptoms that are frightening to you. The trouble is, you can't rely totally on MRI and CT scans to pinpoint these symptoms. Did you know that if you gave 100 "normal" people an MRI, "abnormalities" will show up on about 80%? I spent a lot of time agonizing about something that showed up on mine, until a neurologist I happened to meet socially told me that. His advice? Anything life threatening GENERALLY has clear, convincing, and consistent evidence on MRI or CT. He said not to worry about most anything else unless of course, you are becoming more and more ill. Most vague and "odd" symptoms will eventually resolve (as mine did) if you don't focus on it.
If your weird symptoms are medical in origin, eventually there WILL be clear and strong medical evidence. Until then, there is not much you can do anyway, but eat healthily, don't drink or smoke, and enjoy your work and play. We are all only here for a brief time.
I hope you can try to resolve whether the B12 issue is contributing at all. It certainly could be.
Wishing you well,
christie
JXL, I know basically what you are trying to say, but I think you put it rather strongly and rudely. Patches is looking for help. Sometimes just talking to a community of people (even internet people!) is therapuetic.
Patches, I am sorry you are having symptoms that are frightening to you. The trouble is, you can't rely totally on MRI and CT scans to pinpoint these symptoms. Did you know that if you gave 100 "normal" people an MRI, "abnormalities" will show up on about 80%? I spent a lot of time agonizing about something that showed up on mine, until a neurologist I happened to meet socially told me that. His advice? Anything life threatening GENERALLY has clear, convincing, and consistent evidence on MRI or CT. He said not to worry about most anything else unless of course, you are becoming more and more ill. Most vague and "odd" symptoms will eventually resolve (as mine did) if you don't focus on it.
If your weird symptoms are medical in origin, eventually there WILL be clear and strong medical evidence. Until then, there is not much you can do anyway, but eat healthily, don't drink or smoke, and enjoy your work and play. We are all only here for a brief time.
I hope you can try to resolve whether the B12 issue is contributing at all. It certainly could be.
Wishing you well,
christie
Please be careful of the B-12. There is such a thing of overdosing on it. Alot of Dr.'s are not yet educated on small fiber nueropathy. Neurotin is a wonder ful help.
Give it a rest Patches. You seem to post far too often.Perhaps your symptoms are due to a mental disorder. With all of your symptoms, im sure the docs would have found a cause by now. You seem obsessed with your current condition. Try to relax and for gods sake stay off the internet. I would be willing to bet if you stayed off the internet and stopped thinking you so sick your symptoms may just go away. Dont be mad at this reply, just try to remember there are LOTS of other people who would like to post questions also.
Neurontin is a good drug for nerve pain as well as a psychiatric drug. They use it for a lot of things and I take 800 mg 4X a day, from my psychiatrist for depression, but my urologist wanted to give it to me for my interstitial cystitis and it also helps the back pain I have that's referred to my feet because of nerve damage following surgery at L5 S1. I've been wanting to ask a question here about that but the forum is always full when I check. I've seen you ask questions in the cardiology forum too. It very well could be your vitamin B-12 is causing your problems. Do you take shots for it? I would really look into that, are cataracts a part of that? A friend of mine was just having problems that looked like a brain tumor or MS but it just turned out she needed B-12 shots and she was told if she didn't keep her levels up it could affect her heart.
SOrry to hear about your symptoms. There is a condition of post stroke burning pain associated with a stroke in the part of the brain called the thalamus. The stroke itself consists of one side of the body becoming numb. Later on, symptoms of burning pain occur in th region of numbness. However, migrating burning sensations are less easily localizable to any one part of the nervous system and do not fit with any particular stroke syndrome. I recall our previous communications and your problems with B12 deficiency which this could also be possibly related to. Also, they could just be a painful peripheral neuropathy due to a multitude of diseases such as diabetes which can be evaluated with EMG. As for treatment, there is no known cure but you could try neurontin, elavil, or tegretol. Good luck.
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