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Nearly Four Months, No Answers
Up until mid January of 2005, I was a healthy male of 35 years with no prior major illnesses. Around December of 2004, I first noticed some "twinge"-like sensations in my left temple and I experienced periodic eye strain. I visited an optometrist, who found nothing other than myopia (-1.50 in both eyes). She did off-handedly mention "scarring" in the back of my right eye, as though from a past trauma.
In mid January, the twinge sensations continued and I had a CT scan (w/o contrast) done, which proved negative. A week later, I awoke to my alarm clock and when I suddenly shot my neck forard to look at it, I immediately experienced sensations of whiplash --sudden stiffness in the neck with pain when trying to turn to the left or right. The stiffness continued for a couple days and gradually wore off, but was soon replaced by tingling in the finger tips of both hands and the toes on both feet, plus tinnitis.
I had an MRI done of the cervical spine which found a "small central disc herniation at c3-4 without evidence of cord compression; a "minimal diffuse disc bulge without compression" at c4-5; and a "minute central disc protrusion without compression" at c5-6. This was likely all due to a few moderate car accidents. The doctor, however, did NOT believe these neck injuries could be causing my tingling in my toes. Still, he recommended an epidural steroid injection in my neck.
As the days progressed, so did my worsening symptoms. Soon after being prescribed a weeklong, tapered dose of Prednisone, (my story continued below)
In mid January, the twinge sensations continued and I had a CT scan (w/o contrast) done, which proved negative. A week later, I awoke to my alarm clock and when I suddenly shot my neck forard to look at it, I immediately experienced sensations of whiplash --sudden stiffness in the neck with pain when trying to turn to the left or right. The stiffness continued for a couple days and gradually wore off, but was soon replaced by tingling in the finger tips of both hands and the toes on both feet, plus tinnitis.
I had an MRI done of the cervical spine which found a "small central disc herniation at c3-4 without evidence of cord compression; a "minimal diffuse disc bulge without compression" at c4-5; and a "minute central disc protrusion without compression" at c5-6. This was likely all due to a few moderate car accidents. The doctor, however, did NOT believe these neck injuries could be causing my tingling in my toes. Still, he recommended an epidural steroid injection in my neck.
As the days progressed, so did my worsening symptoms. Soon after being prescribed a weeklong, tapered dose of Prednisone, (my story continued below)
Hi folks:
Just a short note to say "hang in there, you aren't alone." I am experiencing similar problems, and like you, was very healthy before and never had medical problems. Before I got sick, I only saw my doctor about once a year for my check up. I have had three MRI's, two EMGs, an EEG, an Evoked Potential and a psychiatric evaluation. All tests were normal but my ANA is slightly elevated and I have a history of low B12 and Pernicious Anemia in my family. Although they insist my B12 levels are normal, I get a monthly oral injection and take the slow release 1000 mcg metholcobyline (spelled incorrectly) on a daily basis.
My four extremities are more affected then anything, although the dizziness is more evident when I am around anything with noise, hum or vibrations. My body feels like a tuning fork as it seems to vibrate internally. When we are driving and go around a sharp curve, I have to close my eyes, so I don't do any highway driving. I can't go down steep hills or even look at spiral staircases and I don't know why.
The burning in my fingers, toes and hands can fluctuate from either being cold and numb or hot and burning. Sometimes it feels like the top of my hand is on fire for no reason. Usually my fingers feel like they are thawing out after being in a snowbank. The tops of my fingers feel like sharp pins being stuck under the nails, or like they are being squeezed in a vice.
I had footdrop back in the fall of 2001 and I still have walking problems as the sole of my left foot is usually very sore and tender. I find myself walking on the outside of that foot or on my toes to avoid the pain. I have custom made insoles but they don't help much.
The weirdest thing about all this is that even when I am just lying in bed, I feel like my body is split in two, with the right side feeling somewhat normal and the left side, tight, sore and always in pain. The physiotherapist thought that I had taken a stroke as my mouth is still twisted a bit from the bout of Bell's Palsy back in the 1980's and sometimes I slur or stutter.
As for the tingling, it affects my tongue and lips as well and my nervous system is hyperactive. Therefore, I have to lead a sheltered life away from the hustle and bustle of everyday activities that other people take for normal. I just retired this week after working for 40 years. I am female, age 58 with four children. I have no reason to want to feel like this and the psychiatrist ruled in my favour as I don't have anxiety, stress or any addictions, relationship problems, etc. I am healthy in all other aspects but I am bothered by urinary incontince now, which is very annoying.
I have a history of allergies and neuralgia like pain for the past 15 years. I have had various episodes in the past where my foot would just give out on me and I couldn't walk for a week or more. I hadn't hurt myself and never understood why. However, the last episode must have affected the sole of my left foot as it as the arch is much higher then my right one. This caused me to be off balance and when I encounter any change in slope, I go sideways. I can lift 25 pound weights and yet somedays I can't even lift the milk container as the nerve pain shoots down my wrist.
My neuro suspects a lesion on my Upper Motor Neuron, but nothing yet has showed up in the clinical tests. I have to go back for a checkup in August and he stated he will probably order another MRI at that time. So, after three years I don't have a diagnosis or label for my condition either. So, I try to cope with the weird symptoms and find that exercise in the pool and with the Arthritis Society is the best therapy. The hot tub is good to loosen up the stiffness. I need to rock my body to get out of the driver's seat. I have left sided weakness, similar to what a stroke victim would have, but they tell me I didn't have a stroke. That was quite a worry since my mother died of a ruptered artery in her brain when she was only 48. It seems that a grand aunt of hers died the same way and now my first cousin, on her side had to have brain surgery to repair a weak artery in her brain. I don't have headaches or high blood pressure but sometimes I get strong shooting pains in the same left area of my head, but they don't last longer then a few minutes but when they hit, you instinctively flinch, so I am a little worried about that.
I am amazed that so many people worldwide suffer with many of the same symptoms and yet nobody can identify why. Don't let them classify you as it being "all in your head" and get you hooked on antidepressants. I would much rather be in control of my life and endure the pain, then to be doped up and sleeping half the time. Please hang in there and continue to update us on your progress. Personally, I have accepted that this just may be the way it is for me the rest of my life. If it doesn't progress any further, I think that I will be able to handle it if I continue in being pro-active about my health and take a positive attitude towards it all.
Good luck and all the best with your future.
The Canadian
Just a short note to say "hang in there, you aren't alone." I am experiencing similar problems, and like you, was very healthy before and never had medical problems. Before I got sick, I only saw my doctor about once a year for my check up. I have had three MRI's, two EMGs, an EEG, an Evoked Potential and a psychiatric evaluation. All tests were normal but my ANA is slightly elevated and I have a history of low B12 and Pernicious Anemia in my family. Although they insist my B12 levels are normal, I get a monthly oral injection and take the slow release 1000 mcg metholcobyline (spelled incorrectly) on a daily basis.
My four extremities are more affected then anything, although the dizziness is more evident when I am around anything with noise, hum or vibrations. My body feels like a tuning fork as it seems to vibrate internally. When we are driving and go around a sharp curve, I have to close my eyes, so I don't do any highway driving. I can't go down steep hills or even look at spiral staircases and I don't know why.
The burning in my fingers, toes and hands can fluctuate from either being cold and numb or hot and burning. Sometimes it feels like the top of my hand is on fire for no reason. Usually my fingers feel like they are thawing out after being in a snowbank. The tops of my fingers feel like sharp pins being stuck under the nails, or like they are being squeezed in a vice.
I had footdrop back in the fall of 2001 and I still have walking problems as the sole of my left foot is usually very sore and tender. I find myself walking on the outside of that foot or on my toes to avoid the pain. I have custom made insoles but they don't help much.
The weirdest thing about all this is that even when I am just lying in bed, I feel like my body is split in two, with the right side feeling somewhat normal and the left side, tight, sore and always in pain. The physiotherapist thought that I had taken a stroke as my mouth is still twisted a bit from the bout of Bell's Palsy back in the 1980's and sometimes I slur or stutter.
As for the tingling, it affects my tongue and lips as well and my nervous system is hyperactive. Therefore, I have to lead a sheltered life away from the hustle and bustle of everyday activities that other people take for normal. I just retired this week after working for 40 years. I am female, age 58 with four children. I have no reason to want to feel like this and the psychiatrist ruled in my favour as I don't have anxiety, stress or any addictions, relationship problems, etc. I am healthy in all other aspects but I am bothered by urinary incontince now, which is very annoying.
I have a history of allergies and neuralgia like pain for the past 15 years. I have had various episodes in the past where my foot would just give out on me and I couldn't walk for a week or more. I hadn't hurt myself and never understood why. However, the last episode must have affected the sole of my left foot as it as the arch is much higher then my right one. This caused me to be off balance and when I encounter any change in slope, I go sideways. I can lift 25 pound weights and yet somedays I can't even lift the milk container as the nerve pain shoots down my wrist.
My neuro suspects a lesion on my Upper Motor Neuron, but nothing yet has showed up in the clinical tests. I have to go back for a checkup in August and he stated he will probably order another MRI at that time. So, after three years I don't have a diagnosis or label for my condition either. So, I try to cope with the weird symptoms and find that exercise in the pool and with the Arthritis Society is the best therapy. The hot tub is good to loosen up the stiffness. I need to rock my body to get out of the driver's seat. I have left sided weakness, similar to what a stroke victim would have, but they tell me I didn't have a stroke. That was quite a worry since my mother died of a ruptered artery in her brain when she was only 48. It seems that a grand aunt of hers died the same way and now my first cousin, on her side had to have brain surgery to repair a weak artery in her brain. I don't have headaches or high blood pressure but sometimes I get strong shooting pains in the same left area of my head, but they don't last longer then a few minutes but when they hit, you instinctively flinch, so I am a little worried about that.
I am amazed that so many people worldwide suffer with many of the same symptoms and yet nobody can identify why. Don't let them classify you as it being "all in your head" and get you hooked on antidepressants. I would much rather be in control of my life and endure the pain, then to be doped up and sleeping half the time. Please hang in there and continue to update us on your progress. Personally, I have accepted that this just may be the way it is for me the rest of my life. If it doesn't progress any further, I think that I will be able to handle it if I continue in being pro-active about my health and take a positive attitude towards it all.
Good luck and all the best with your future.
The Canadian
Uhh..I don't know where to start. Let's start 9 years ago when I started having 1st symptoms ( maybe not connected to this)I was 21 then.I had a cold and some weird temperature 37.5 which wouldn't go away for years ( I think I have it even now sometimes). Prior to cold I had really bad muscle pain in my shoulder and arm.It all went away but the temperature remained.After that I started feeling dizzy but only when I would lie down...it was a feeling like somebody was rocking a boat.My scalp was tinling..actually the left half and it would last for weeks and go away.I would get episodes of this tingling and dizziness for years but i learned how to manage them by doing some simple exercises for neck and shoulders and they would quickly go away.
Nine years have passed since then and this didn't cause many problems to me until January this year.I had dizziness again although not so severe and by doing exercises i managed to make it go away.But, this is where the real problem starts...after that I started feeling tingling in my right heel and fingers. it only happned during day i would never feel that at night.Just tingling...no pain..no loss of feeling..no problem walking or anything.Sometimes I would have like hot/cold needles and pins sensation but just sometimes. I went to my neuro who did all the neuro checks and told me I should take sth for calming down since everything was ok. I started taking antidepressants but it wouldn't go away.it spread to my right heel. i decided not to panick..let it all pass.And it kinda did..at least it became less present. In the meanwhile I did some blood checks ( OK ),X ray of spine and neck ( OK, with minor degenerations which could cause my dizziness), went to 2 different neuros a couple of times and they both said it was all just in my head.Then the twitching started..first in my fingers, then calves and feet.Clearly visible I could see the muscles under my skin..then spread to neck, eye, etc. I started taking some magnesium and it got better. Now I have minor twitches but I have them every day.Then, five weeks ago started having strange sensations on my tongue...first like sth cold was on it...then...it was burning, tingling etc.Now..the twictes are not so present, neither the tingling but the tongue thing is driving me crazy. I don't know what to do. During the day it sometimes gets better and I almost feel like everything is normal again but then it gets worse. Sometimes it hepls when I take a tranquilizer sometimes it doesn't. I don't know what to do. Please help. I'm terrified of MS although my neuro said it was unlikely.
Nine years have passed since then and this didn't cause many problems to me until January this year.I had dizziness again although not so severe and by doing exercises i managed to make it go away.But, this is where the real problem starts...after that I started feeling tingling in my right heel and fingers. it only happned during day i would never feel that at night.Just tingling...no pain..no loss of feeling..no problem walking or anything.Sometimes I would have like hot/cold needles and pins sensation but just sometimes. I went to my neuro who did all the neuro checks and told me I should take sth for calming down since everything was ok. I started taking antidepressants but it wouldn't go away.it spread to my right heel. i decided not to panick..let it all pass.And it kinda did..at least it became less present. In the meanwhile I did some blood checks ( OK ),X ray of spine and neck ( OK, with minor degenerations which could cause my dizziness), went to 2 different neuros a couple of times and they both said it was all just in my head.Then the twitching started..first in my fingers, then calves and feet.Clearly visible I could see the muscles under my skin..then spread to neck, eye, etc. I started taking some magnesium and it got better. Now I have minor twitches but I have them every day.Then, five weeks ago started having strange sensations on my tongue...first like sth cold was on it...then...it was burning, tingling etc.Now..the twictes are not so present, neither the tingling but the tongue thing is driving me crazy. I don't know what to do. During the day it sometimes gets better and I almost feel like everything is normal again but then it gets worse. Sometimes it hepls when I take a tranquilizer sometimes it doesn't. I don't know what to do. Please help. I'm terrified of MS although my neuro said it was unlikely.
Hi Anci:
Sorry to hear about your 9-year-old issues. How long have you been seeing this neuro? How many second opinions have you tried? Was a brain and spine MRI performed to determine if there were any lesions?
Do you notice a loss of taste sensation along with your tongue tingling issues?
Sorry to hear about your 9-year-old issues. How long have you been seeing this neuro? How many second opinions have you tried? Was a brain and spine MRI performed to determine if there were any lesions?
Do you notice a loss of taste sensation along with your tongue tingling issues?
...and just a couple more questions for you: have you seen a urologist regarding that aspect of your sensation loss? Did you experience an intense burning sensation in your lower back/groin area prior to your loss of sensation in the bladder?
I saw a urologist a couple months back but unfortunately it was after the episodes of burning pain which, I believe, are somehow responsible for the ultimate sensation loss in that area. He couldn't find anything wrong, either.
Curiouser and curiouser...
I saw a urologist a couple months back but unfortunately it was after the episodes of burning pain which, I believe, are somehow responsible for the ultimate sensation loss in that area. He couldn't find anything wrong, either.
Curiouser and curiouser...
Let me ask you about a couple more things. This is kind of strange, but do you ever feel as though you lack the ability to sense when you need to use the bathroom (urinate)? I can go a large portion of the day without using the bathroom, then when I "remember" to use the bathroom I find that I had to go quite a bit, but didn't sense it like I used to be able to. Another thing, do you ever wake up in the middle of the night short of breath? I do this all the time.
I will say that I have to agree with you about the frustration of losing a sense. I have been fortunate enough not to lose my sense of smell (not yet anyways) but my sense of taste, like yours, waxes/wanes. I also notice that my entire "basket" of symptoms fluctuates all together. The taste thing comes and goes along with the lack of sensation, tinnitus, blurry vision, and shortness of breath. It sucks when you can't enjoy a good beer, a slice of pizza, a piece of cake, or anything else. Everything just feels like mush in your mouth. I find that if I breathe just right when I'm eating I can taste a little bit, but that's about it most of the time. Most of the time, my sense of taste goes from about a 99% loss, down to about a 60% loss.
My own theory is that this problem is caused by a small chemical imbalance that is effecting our sensory perception. Thyroid disorders, although that's not what we have, can cause problems with taste/smell, and thyroid is all about chemicals. Certain medications also effect taste/smell, as well as sensation, especially antidepressants, and antidepressants are all about chemicals and neurotransmitters. In the meantime, I'm going to try and get my Primary doctor to refer me to an endocrinologist, even though he's convinced that an endocrine problem is not the culprit. Even my neurologist told me that he knows of nothing neurological that can cause the loss of taste. What else could it be? There's obviously something wrong and it's not in our heads. After all, if we have symptoms of something, how could it be nothing?
I will say that I have to agree with you about the frustration of losing a sense. I have been fortunate enough not to lose my sense of smell (not yet anyways) but my sense of taste, like yours, waxes/wanes. I also notice that my entire "basket" of symptoms fluctuates all together. The taste thing comes and goes along with the lack of sensation, tinnitus, blurry vision, and shortness of breath. It sucks when you can't enjoy a good beer, a slice of pizza, a piece of cake, or anything else. Everything just feels like mush in your mouth. I find that if I breathe just right when I'm eating I can taste a little bit, but that's about it most of the time. Most of the time, my sense of taste goes from about a 99% loss, down to about a 60% loss.
My own theory is that this problem is caused by a small chemical imbalance that is effecting our sensory perception. Thyroid disorders, although that's not what we have, can cause problems with taste/smell, and thyroid is all about chemicals. Certain medications also effect taste/smell, as well as sensation, especially antidepressants, and antidepressants are all about chemicals and neurotransmitters. In the meantime, I'm going to try and get my Primary doctor to refer me to an endocrinologist, even though he's convinced that an endocrine problem is not the culprit. Even my neurologist told me that he knows of nothing neurological that can cause the loss of taste. What else could it be? There's obviously something wrong and it's not in our heads. After all, if we have symptoms of something, how could it be nothing?
I believe I can relate almost completely with your issue with sensing the need to urinate. The sensation, for me, has indeed changed. Like many of my other sensations, the feeling of needing to urinate has become muted.
This loss of sensation has not led me to any problems with "losing control" of my bladder, thankfully. I should also clarify that it is not a complete loss of sensation.
It's possible this is all due to some sort of chemical imbalance, but in my case the sudden onset of the symptoms occurring so close to the time of my neck injury seems very suspicious to me. Perhaps this is related to the 'Central sensitization' the doctor described to me in his/her answer above.
I am also scheduled to see a "taste and smell" specialist here in Cincinnati. Hopefully they can give me some answers. Good luck to you --please feel free to post any follow-up questions or comments...would be glad to share any information related to our similar illnesses.
This loss of sensation has not led me to any problems with "losing control" of my bladder, thankfully. I should also clarify that it is not a complete loss of sensation.
It's possible this is all due to some sort of chemical imbalance, but in my case the sudden onset of the symptoms occurring so close to the time of my neck injury seems very suspicious to me. Perhaps this is related to the 'Central sensitization' the doctor described to me in his/her answer above.
I am also scheduled to see a "taste and smell" specialist here in Cincinnati. Hopefully they can give me some answers. Good luck to you --please feel free to post any follow-up questions or comments...would be glad to share any information related to our similar illnesses.
Hi Rocket:
While I was in the hospital for a few days having neurological tests done, they took all kinds of bloodwork. In the records I have, some of the days in which I was tested showed elevated glucose levels, but they never indicated to me that this was a result of diabetes or hypglycemia.
For me, it's a loss of both taste and smell. I was particularly depressed today because they were painting a wall at work. Other employees sitting around me were complaining that the strong paint smell was giving them a headache...I, however, couldn't smell the paint at all. Of course, people who read this and don't understand what it's like to lose one's sense of smell don't understand how awful it is, or why I'd want to smell fresh paint.
While I was in the hospital for a few days having neurological tests done, they took all kinds of bloodwork. In the records I have, some of the days in which I was tested showed elevated glucose levels, but they never indicated to me that this was a result of diabetes or hypglycemia.
For me, it's a loss of both taste and smell. I was particularly depressed today because they were painting a wall at work. Other employees sitting around me were complaining that the strong paint smell was giving them a headache...I, however, couldn't smell the paint at all. Of course, people who read this and don't understand what it's like to lose one's sense of smell don't understand how awful it is, or why I'd want to smell fresh paint.
Cacklebunny,
I came across your list of symptoms, and it sounds almost exactly like what I'm dealing with! Nearly a year ago, i noticed one day that my sense of taste had declined sharply. Being that I don't usually have allergy problems, and that I didn't have a sore throat, stuffy nose, or anything of the sort, it really bothered me. My sense of smell remained highly intact. I noticed at the same time, that my sensation all over had been deadened, or didn't seem as sharp. I've had some of the burning senastions as well, spasms, twiches, and other things. My ears ring like crazy, especially at night when I get really tired. I've been to the doctor numerous times, had all kinds of bloodwork done, went to a neuro, the whole 9 yards, no diagnosis, no theories of what it might be, nothing. My personal theory is that it's metabolic. I have hypoglycemia and I really, really believe that it's something related to blood sugar/metabolism. I've lived like this for almost a year, and it really hasn't gotten worse. The taste thing is most noticeable as it seems to come and go like yours does. I wish I could offer more help as to saying what it might be, but maybe you should investigate taking a Glucose Tolerance Test to see if you might have a metabolic issue.
Take care,
Rocketsurgeon
I came across your list of symptoms, and it sounds almost exactly like what I'm dealing with! Nearly a year ago, i noticed one day that my sense of taste had declined sharply. Being that I don't usually have allergy problems, and that I didn't have a sore throat, stuffy nose, or anything of the sort, it really bothered me. My sense of smell remained highly intact. I noticed at the same time, that my sensation all over had been deadened, or didn't seem as sharp. I've had some of the burning senastions as well, spasms, twiches, and other things. My ears ring like crazy, especially at night when I get really tired. I've been to the doctor numerous times, had all kinds of bloodwork done, went to a neuro, the whole 9 yards, no diagnosis, no theories of what it might be, nothing. My personal theory is that it's metabolic. I have hypoglycemia and I really, really believe that it's something related to blood sugar/metabolism. I've lived like this for almost a year, and it really hasn't gotten worse. The taste thing is most noticeable as it seems to come and go like yours does. I wish I could offer more help as to saying what it might be, but maybe you should investigate taking a Glucose Tolerance Test to see if you might have a metabolic issue.
Take care,
Rocketsurgeon
Hi Seal:
No, it's not upsetting to hear; it's advice I've given others on this board who stand in our shoes.
I have tried to maintain a positive attitude and of course you understand how difficult that is.
Hopefully time will yield answers for us both, because it's the uncertainty and lack of diagnosis that is the most difficult aspect to endure.
No, it's not upsetting to hear; it's advice I've given others on this board who stand in our shoes.
I have tried to maintain a positive attitude and of course you understand how difficult that is.
Hopefully time will yield answers for us both, because it's the uncertainty and lack of diagnosis that is the most difficult aspect to endure.
Dear Cacklebunny,
Your symptoms and other's comments after reading this forum and others tells me that what I have experienced since 1985 with various symptoms of a neuropathy pain being the worst is something many, many folks suffer from.
There are so many possibilities causing your symptoms and mine because we are dealing with the CNS, BRAIN, PNS. If I may suggest that something that has helped me greatly. Positive Attitude. There are medical problems that are so deep and varied the great Drs. may never figure them out. Treat what symptoms you can, stay positive and be thankful for what you have and can do.
Hope this does not upset you.
Your symptoms and other's comments after reading this forum and others tells me that what I have experienced since 1985 with various symptoms of a neuropathy pain being the worst is something many, many folks suffer from.
There are so many possibilities causing your symptoms and mine because we are dealing with the CNS, BRAIN, PNS. If I may suggest that something that has helped me greatly. Positive Attitude. There are medical problems that are so deep and varied the great Drs. may never figure them out. Treat what symptoms you can, stay positive and be thankful for what you have and can do.
Hope this does not upset you.
I definitely sympathize with your plight, newcomer05. If you situation was like mine, then you were perfectly healthy and anxiety-free prior to the onset of your symptoms.
The unfortunate reality is that we are naturally going to encounter some level of anxiety when we suddenly experience serious symptoms. This almost inevitably leads to doctors suggesting the anxiety came first, which we both know isn't the case, as we have no history of anxiety. Still, it's difficult to convice doctors of that, especially once the suggestion is passed from one doctor to another in written consultation reports.
My suggestion is to obtain copies of all the consultation reports and lab work that has been performed on you, including any emergency room reports. You may be surprised to find that they are stating that your symptoms are being caused by anxiety or at least speculating as such. Once that ball gets rolling, it's kind of hard to stop it unless you go to a completely independent doctor who has no access to that history of files.
The unfortunate reality is that we are naturally going to encounter some level of anxiety when we suddenly experience serious symptoms. This almost inevitably leads to doctors suggesting the anxiety came first, which we both know isn't the case, as we have no history of anxiety. Still, it's difficult to convice doctors of that, especially once the suggestion is passed from one doctor to another in written consultation reports.
My suggestion is to obtain copies of all the consultation reports and lab work that has been performed on you, including any emergency room reports. You may be surprised to find that they are stating that your symptoms are being caused by anxiety or at least speculating as such. Once that ball gets rolling, it's kind of hard to stop it unless you go to a completely independent doctor who has no access to that history of files.
My timing seem to be coinciding with Cacklebunny. My issues were quite serious and got way worst after accupressue/chiropractic horror. I have trouble accepting this especially at age of 30 although I know I don't have a choice. Everyday is a struggle for me. So far all the specialists seem to think that everything is psychological (although it's been taken a tole). No one believe my symptoms and observation.
How do you go on with work/life?
How do you go on with work/life?
But Cackle--you have little choice but to wait things out right now. Keep a log of what's going on, and live your life right in the best, healthiest manner you can, trying not to focus on what could be wrong (as hard as that may be). I'm not saying give up on your search, but don't let it consume your life.
Please don't think I'm being Pollyanna-ish, but focusing on the negative, on illness and sickness, rarely helps bring positives into your life. I'm a 14 year cancer survivor with bilateral mastectomies, and if I worried about every pain I have (and at age 47 I have plenty) and thought about the possibility of metastatic disease or genetic diseases common in our family, I would curl up in a ball and wither away. I have a significant chance of late onset metastatic disease right now, but I barely give it a thought. What will be, will be. If I worry about the "what ifs", I can't think about the good things in life "right now". I live the best way I can, laugh a lot, love my dogs (and husband), work hard and play hard.
I wish you well, my friend, and hope that you find the answers you need, and soon.
Please don't think I'm being Pollyanna-ish, but focusing on the negative, on illness and sickness, rarely helps bring positives into your life. I'm a 14 year cancer survivor with bilateral mastectomies, and if I worried about every pain I have (and at age 47 I have plenty) and thought about the possibility of metastatic disease or genetic diseases common in our family, I would curl up in a ball and wither away. I have a significant chance of late onset metastatic disease right now, but I barely give it a thought. What will be, will be. If I worry about the "what ifs", I can't think about the good things in life "right now". I live the best way I can, laugh a lot, love my dogs (and husband), work hard and play hard.
I wish you well, my friend, and hope that you find the answers you need, and soon.
Thanks for your comments, Christie.
To answer your question, I neither drink nor smoke.
While I understand that some medical problems tend to reveal themselves over time, it's frustrating to observe sensations disappearing and not knowing if I'll ever regain them. Permanent nerve damage is a hard price to pay for waiting something out.
The lack of sensation throughout my body that is especially apparent in the lips, fingers, feet and groin area are particularly troubling. I understand tests like EMG's and Somatosensory evoked potentials don't pick up the fine loss of sense of touch...they instead test for loss in larger nerve fibers. So until those fibers are also affected, I guess this is all "subjective" losses to my doctors.
To answer your question, I neither drink nor smoke.
While I understand that some medical problems tend to reveal themselves over time, it's frustrating to observe sensations disappearing and not knowing if I'll ever regain them. Permanent nerve damage is a hard price to pay for waiting something out.
The lack of sensation throughout my body that is especially apparent in the lips, fingers, feet and groin area are particularly troubling. I understand tests like EMG's and Somatosensory evoked potentials don't pick up the fine loss of sense of touch...they instead test for loss in larger nerve fibers. So until those fibers are also affected, I guess this is all "subjective" losses to my doctors.
Hang in there until the doc answers and can perhaps give you some more directions to look in.
Something I've observed in 25 years as a nurse is that eventually, almost every serious illness will declare itself and a diagnosis WILL be established. Until that time, eat in a healthy manner, avoid drugs or alcohol (can't remember if you said you drank or not), don't smoke, and get plenty of exercise and rest. There is really little else to do until such a time as your syndrome becomes more recognizable.
And although this may sound stupid to many--a sincere prayer for acceptance and patience made daily to your favorite higher power may bring you some peace and help make the waiting easier. Can't hurt!
Something I've observed in 25 years as a nurse is that eventually, almost every serious illness will declare itself and a diagnosis WILL be established. Until that time, eat in a healthy manner, avoid drugs or alcohol (can't remember if you said you drank or not), don't smoke, and get plenty of exercise and rest. There is really little else to do until such a time as your syndrome becomes more recognizable.
And although this may sound stupid to many--a sincere prayer for acceptance and patience made daily to your favorite higher power may bring you some peace and help make the waiting easier. Can't hurt!
Your complex series of symptoms seem to be temporally related to the abrupt neck movement you described, so this is probably more than coincidence
It is possible that a sudden neck movement in the setting of a disc herniation could transiently 'ding' the spinal cord, and cause essentially a 'bruise' of the spinal cord - this may not nessarily be seen on the MRI. This could take up to several weeks to months to heal with a variety of symptoms such as tingling etc. Without objective evidence from tests (ie SEPs) though this is speculation
You should be encouraged by all the normal studies and the overwhelming evidence that your brain, spinal cord and nerves appear to be free of structural disease. Small nerve fibers are not evaluated by these tests however and some of your symptoms couldbe explained by this - a skin biopsy looking at epidermal nerve fiber density and morphology is a new and accurate method of looking at the small nerve fibers.
Quantitative Sensory Testing can also provide more objective evidence of sensory function and may point your doctors in another direction. Other causes of a painful peripheral neuropathy should be rules out also
It may be useful to look into whether you have 'Central sensitization' - an oversensitivity of the brain to peripheral stimuli, initiated by some painful event or condition. Medications to modulate central pain responses such as amitryptaline, effexor etc may help
While all this is going on, and investigations are ongoing, you should try to concentrate on living well (as suggested by another comment, and thinking positively - psychological rehabilitation from this problem will be as important as physical rehabilitation - you have been through a lot of worry - I reccomend a clinical psychologist while your tests or ongoing or time reveals an answer.
It is possible that a sudden neck movement in the setting of a disc herniation could transiently 'ding' the spinal cord, and cause essentially a 'bruise' of the spinal cord - this may not nessarily be seen on the MRI. This could take up to several weeks to months to heal with a variety of symptoms such as tingling etc. Without objective evidence from tests (ie SEPs) though this is speculation
You should be encouraged by all the normal studies and the overwhelming evidence that your brain, spinal cord and nerves appear to be free of structural disease. Small nerve fibers are not evaluated by these tests however and some of your symptoms couldbe explained by this - a skin biopsy looking at epidermal nerve fiber density and morphology is a new and accurate method of looking at the small nerve fibers.
Quantitative Sensory Testing can also provide more objective evidence of sensory function and may point your doctors in another direction. Other causes of a painful peripheral neuropathy should be rules out also
It may be useful to look into whether you have 'Central sensitization' - an oversensitivity of the brain to peripheral stimuli, initiated by some painful event or condition. Medications to modulate central pain responses such as amitryptaline, effexor etc may help
While all this is going on, and investigations are ongoing, you should try to concentrate on living well (as suggested by another comment, and thinking positively - psychological rehabilitation from this problem will be as important as physical rehabilitation - you have been through a lot of worry - I reccomend a clinical psychologist while your tests or ongoing or time reveals an answer.
Thanks for the comments, Spring. Strength in numbers, strength in numbers. :)
Just forgot to mention one more thing. My knee reflexes were so brisk they kicked the doctor. This was not my normal reaction in my other yearly checkups, so something happened somewhere in between to cause that.
Hi Spring,
Thanks for sharing your experience. Just wanted to ask -- have you found anything (besides narcotic pain relievers) that works for neuralgia? I am in constant pain, Advil and Tylenol are useless, and I am reluctant to start taking narcotics.
Thanks for sharing your experience. Just wanted to ask -- have you found anything (besides narcotic pain relievers) that works for neuralgia? I am in constant pain, Advil and Tylenol are useless, and I am reluctant to start taking narcotics.
Thanks, stss. One of the most frustrating aspects is my loss of sensation and sense of taste and smell. It seems especially my fingertips are losing sensation with each passing day. Some days they burn and I just can't seem to appreciate soft items vs. rough items....my whole tactile experience throughout my body seems greatly diminished.
Yet, nothing shows up on tests. From what I've been told EMG's and somatosensory evoked potential tests won't show "small-fiber" nerve loss...and I haven't been able to find out if there are any tests available to definitively measure the specific aspect of sensation that I've lost.
For all the technology we have nowadays (mapping DNA, genetic engineering, etc.) you'd think figuring this out would be pretty straightforward. But I guess when we suffer with something like this, we might as well be living in the 1800's. :(
Yet, nothing shows up on tests. From what I've been told EMG's and somatosensory evoked potential tests won't show "small-fiber" nerve loss...and I haven't been able to find out if there are any tests available to definitively measure the specific aspect of sensation that I've lost.
For all the technology we have nowadays (mapping DNA, genetic engineering, etc.) you'd think figuring this out would be pretty straightforward. But I guess when we suffer with something like this, we might as well be living in the 1800's. :(
Hi cacklebunny,
I'm going through something similar (and have been trying to get my question posted on here). For 3 months, I've had burning/stabbing pain, shivery sensations, and tingling going down my arms and legs, with some loss of control over my fingers. All the blood tests and MRIs have come back normal. Prior to this, I was in excellent health -- absolutely no problems. Now my life revolves around controlling my pain. I don't have any ideas for you (sorry!) but hang in there -- if you're persistent enough, I believe you'll get answers.
I'm going through something similar (and have been trying to get my question posted on here). For 3 months, I've had burning/stabbing pain, shivery sensations, and tingling going down my arms and legs, with some loss of control over my fingers. All the blood tests and MRIs have come back normal. Prior to this, I was in excellent health -- absolutely no problems. Now my life revolves around controlling my pain. I don't have any ideas for you (sorry!) but hang in there -- if you're persistent enough, I believe you'll get answers.
Disclaimer: I'm not an M.D. it's just a suggestion
Seeing a rheumatologist might be the best thing. Have you heard of Fibromyalgia? Many of your symptoms would be covered by it. Neurological symptoms, tingling, blurry and dry eyes, tense and stiff limbs, bowel and urinary problems, intense back pain, muscle twitches and nightime spasms and numbness are all symptoms plus Fibromyalgia can "come and go" like your symptoms seem to.
Best of luck to you. I hope you get some relief soon.
Seeing a rheumatologist might be the best thing. Have you heard of Fibromyalgia? Many of your symptoms would be covered by it. Neurological symptoms, tingling, blurry and dry eyes, tense and stiff limbs, bowel and urinary problems, intense back pain, muscle twitches and nightime spasms and numbness are all symptoms plus Fibromyalgia can "come and go" like your symptoms seem to.
Best of luck to you. I hope you get some relief soon.
A couple clarifications:
1. the "moderate car accidents" were scattered over the last 16 years...the most recent of which being more than five years ago.
2. The same week that I was on the Prednisone dose pack, I was also taking Flexeril and stopped taking both at the end of that week (the complete dose pack was taken).
1. the "moderate car accidents" were scattered over the last 16 years...the most recent of which being more than five years ago.
2. The same week that I was on the Prednisone dose pack, I was also taking Flexeril and stopped taking both at the end of that week (the complete dose pack was taken).
(continued from above)
The tingling degraded to heaviness and burning sensations throughout the arms and legs; I partially lost my sense of taste and smell; the lower-left side of my face and mouth twitched,tingled and "pulled"; the tip of my tongue burned/tingled; I lost sleep and weight with increased muscle twitching and being "jerked" awake; I felt burning pain behind my nose and pain in my eyes when I tried to look up,down,left or right, particularly in the morning; I had problems getting food down as my mouth felt dry; and sometimes I'd notice a strange, temporary redness on my left cheek that once or twice produced an itchy "blister" before disappearing almost as fast as it appeared; I developed lower-back pain that radiated into my prostate/bladder area, had difficulty making bowel movements and felt a frequent sensation of needing to urinate.
I was finally hospitalized for a few days to allow my doctor and the on-call neurologist to run a battery of tests. A lumbar puncture, brain MRI, EEG, EKG and a series of blood tests looking for Vitamin B12 deficiency, ANA/SED rate levels and deficiencies were performed. A Multiple Sclerosis profile was done on the CSF but it was normal (no O-bands). My protein, WBC and RBC levels were elevated (45, 17 and 13, respectively) but they had attributed this elevation to the fact that I had had the epidural steroid injection to my neck only two days prior to my spinal tap.
After being discharged from the hospital, the symptoms seemed to get worse. The burning sensations became more intense; my muscles in my legs and arms seemed to feel tight and would not relax; I'd have twitching throughout my body, including the head; and my vision began to worsen: my right eye developed an increase in floaters and I began to "see" my heartbeat pulse through my vision while I was at rest (an area of my vision would pulsate in time with my heartbeat); afterimages would linger in my sight; and I'd see tiny "boiling" disturbances of light when staring at the sky or other bright light.
Over the course of all this, I've had a lumbar spine MRI (negative); thoracic spine MRI (negative) three cervical spine MRI's, two of which were with contrast (negative except the aforementioned slipped discs); a second CT scan with contrast (negative); a second lumbar puncture (which showed normal protein and WBC levels this time); two brain MRI's with contrast (the latest of which was taken in late March --both were negative or "unremarkable"). A "rheumatological screen" was performed and came out negative; tests for Lyme Disease and heavy-metal poisoning also were negative (lead and mercury); a specific set of DNA tests for Sjorgren's Syndrome also turned out negative; A visual evoked potential test (normal --90 ms for each eye); a somatosensory evoked potential on my legs (normal);two EMG's (one for each side of my body --both normal).
I'm at a complete loss. I have never been sick on a scale like this before --in fact I was rarely sick before this and usually felt "invincible". Yet since the doctors can't seem to find the cause, and because nearly all my symptoms have been sensory-related, the inevitable suggestion has been that it's all psychosomatic. I am frustrated by this conclusion, especially when one considers my health history and normal psychological profile.
Right now, I'm being referred to a rheumatologist, though the neuro suggested it might be a waste of time. I saw an ENT who specializes in taste/smell disorders who gave me a "scratch-n-sniff" test. Of the 40 different smells, I was able to identify 33, which he said was abnormal. He couldn't find any physical reason why I've lost the taste/smell, but suggests it could be either neurologically based or related to an immune system disorder. I'm going to physical therapy for my disc bulges. Lastly, I've seen a neuro-opthalmologist who did not find optic neuritis or any abnormalities other than the floaters and the "beginnings of a cataract" in my right eye that hasn't yet reached my field of vision; and an ophthalmologist who specializes in "dry eye" disorders who did diagnose me with "blepharitis," which I'm being treated for. But I have a suspicion that whatever is causing my eye problems and other neurological symptoms is likely a more global problem. One thing that interested me about the brain MRI's was that in both cases, the doctors off-handedly noted a "prominent perivascular space in the left inferior basal ganglia." When I pressed my neurologist(s) about this, they said it's a normal occurrence and would have no bearing on the large array of symptoms I suffer from. I'm not clear, however, if such a "space" is normal for a man my age or if it typically signals something else going on.
I realize a diagnosis over the Internet is impossible, so any open speculation on my issue plus direction would be greatly appreciated. As of this writing, my taste/smell issues wax and wane but are never at normal levels; my sense of light touch is completely gone (the softness of petting a cat; being able to discern sharp objects vs. dull; near complete loss of sexual sensation but no problem maintaining erection.), though I can sense things by pressure, vibration and hot/cold; and my vision and tinnitus symptoms remain unchanged. I have not experienced the intense burning in my arms and legs in over a week, thankfully, but wonder if that lull is merely transient, as the neck pain, tingling in the hands/feet and face with muscle twitching in the arms/legs have again returned.
The two most likely possibilities in my mind were Lyme disease and lead poisoning due to my hikes in the woods/caves of Tennessee last year; a trip to New Orleans; and other nature-related hikes. I've lived in my 80-year-old house for one year and had been sanding paint off one wall back in November. Alas, these tests have come back negative (though I understand the tests aren't very reliable). I even threw out the long-shot possibility of toxoplasmosis or cat scratch disease to the neurologist since I have two indoor cats with claws. No one in my family has any history of neurological or immune system problems, but we do have a history of diabetes and heart disease (I am not diabetic). After three months and many tests and doctors, I feel no closer to finding any answers. At this point they are advising me to treat the individual symptoms instead of finding the source of all the problems, which to me makes no sense.
The tingling degraded to heaviness and burning sensations throughout the arms and legs; I partially lost my sense of taste and smell; the lower-left side of my face and mouth twitched,tingled and "pulled"; the tip of my tongue burned/tingled; I lost sleep and weight with increased muscle twitching and being "jerked" awake; I felt burning pain behind my nose and pain in my eyes when I tried to look up,down,left or right, particularly in the morning; I had problems getting food down as my mouth felt dry; and sometimes I'd notice a strange, temporary redness on my left cheek that once or twice produced an itchy "blister" before disappearing almost as fast as it appeared; I developed lower-back pain that radiated into my prostate/bladder area, had difficulty making bowel movements and felt a frequent sensation of needing to urinate.
I was finally hospitalized for a few days to allow my doctor and the on-call neurologist to run a battery of tests. A lumbar puncture, brain MRI, EEG, EKG and a series of blood tests looking for Vitamin B12 deficiency, ANA/SED rate levels and deficiencies were performed. A Multiple Sclerosis profile was done on the CSF but it was normal (no O-bands). My protein, WBC and RBC levels were elevated (45, 17 and 13, respectively) but they had attributed this elevation to the fact that I had had the epidural steroid injection to my neck only two days prior to my spinal tap.
After being discharged from the hospital, the symptoms seemed to get worse. The burning sensations became more intense; my muscles in my legs and arms seemed to feel tight and would not relax; I'd have twitching throughout my body, including the head; and my vision began to worsen: my right eye developed an increase in floaters and I began to "see" my heartbeat pulse through my vision while I was at rest (an area of my vision would pulsate in time with my heartbeat); afterimages would linger in my sight; and I'd see tiny "boiling" disturbances of light when staring at the sky or other bright light.
Over the course of all this, I've had a lumbar spine MRI (negative); thoracic spine MRI (negative) three cervical spine MRI's, two of which were with contrast (negative except the aforementioned slipped discs); a second CT scan with contrast (negative); a second lumbar puncture (which showed normal protein and WBC levels this time); two brain MRI's with contrast (the latest of which was taken in late March --both were negative or "unremarkable"). A "rheumatological screen" was performed and came out negative; tests for Lyme Disease and heavy-metal poisoning also were negative (lead and mercury); a specific set of DNA tests for Sjorgren's Syndrome also turned out negative; A visual evoked potential test (normal --90 ms for each eye); a somatosensory evoked potential on my legs (normal);two EMG's (one for each side of my body --both normal).
I'm at a complete loss. I have never been sick on a scale like this before --in fact I was rarely sick before this and usually felt "invincible". Yet since the doctors can't seem to find the cause, and because nearly all my symptoms have been sensory-related, the inevitable suggestion has been that it's all psychosomatic. I am frustrated by this conclusion, especially when one considers my health history and normal psychological profile.
Right now, I'm being referred to a rheumatologist, though the neuro suggested it might be a waste of time. I saw an ENT who specializes in taste/smell disorders who gave me a "scratch-n-sniff" test. Of the 40 different smells, I was able to identify 33, which he said was abnormal. He couldn't find any physical reason why I've lost the taste/smell, but suggests it could be either neurologically based or related to an immune system disorder. I'm going to physical therapy for my disc bulges. Lastly, I've seen a neuro-opthalmologist who did not find optic neuritis or any abnormalities other than the floaters and the "beginnings of a cataract" in my right eye that hasn't yet reached my field of vision; and an ophthalmologist who specializes in "dry eye" disorders who did diagnose me with "blepharitis," which I'm being treated for. But I have a suspicion that whatever is causing my eye problems and other neurological symptoms is likely a more global problem. One thing that interested me about the brain MRI's was that in both cases, the doctors off-handedly noted a "prominent perivascular space in the left inferior basal ganglia." When I pressed my neurologist(s) about this, they said it's a normal occurrence and would have no bearing on the large array of symptoms I suffer from. I'm not clear, however, if such a "space" is normal for a man my age or if it typically signals something else going on.
I realize a diagnosis over the Internet is impossible, so any open speculation on my issue plus direction would be greatly appreciated. As of this writing, my taste/smell issues wax and wane but are never at normal levels; my sense of light touch is completely gone (the softness of petting a cat; being able to discern sharp objects vs. dull; near complete loss of sexual sensation but no problem maintaining erection.), though I can sense things by pressure, vibration and hot/cold; and my vision and tinnitus symptoms remain unchanged. I have not experienced the intense burning in my arms and legs in over a week, thankfully, but wonder if that lull is merely transient, as the neck pain, tingling in the hands/feet and face with muscle twitching in the arms/legs have again returned.
The two most likely possibilities in my mind were Lyme disease and lead poisoning due to my hikes in the woods/caves of Tennessee last year; a trip to New Orleans; and other nature-related hikes. I've lived in my 80-year-old house for one year and had been sanding paint off one wall back in November. Alas, these tests have come back negative (though I understand the tests aren't very reliable). I even threw out the long-shot possibility of toxoplasmosis or cat scratch disease to the neurologist since I have two indoor cats with claws. No one in my family has any history of neurological or immune system problems, but we do have a history of diabetes and heart disease (I am not diabetic). After three months and many tests and doctors, I feel no closer to finding any answers. At this point they are advising me to treat the individual symptoms instead of finding the source of all the problems, which to me makes no sense.
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