Aa
Undiagnosed...not taken seriously
Thank you for taking the time to answer my question.
Here is my history: About 6 months ago I began having toe and foot cramping in my right foot while driving. When holding the brake pedal for extended periods at a light it would become worse, and I began using the emergency brake to assist me in stopping and staying stopped. It felt like electricity was surging through my foot. In turn the muscles around my right pelvis/hip area became very tight and didn't have the strength to pick my leg up to move. I went to my GP who did an xray of the lumbar spine and many blood tests. Also got me in to see a neurologist the following Monday in order to rule out Guillaine Barre. Neurologist tested reflexes (no Guillaine Barre). Said that these things usually go away in a week. The only note he had was that my reflexes were hyperreflexive. Went back to my GP who sent my to physical therapy where they said I had very weak muscles (esp. right side) and scoliosis, tailbone was misaligned and pelvic tilt was off (no xray to support this and I am not overweight, live on 4 acres (therefore pretty active), and this came on suddenly). In the mean time, my symptoms begin manifesting. I have experienced severe dizziness 2-3 times (almost passing out), my foot continues to cramp while driving and twitches, I feet "internal" muscle twitches in my legs, feet, and under stress in my neck and shoulders/arms, and most prevalent is that I cannot walk for more than 20 minutes, especially on hard floors, without my foot freezing and my legs feeling extremely shaky, stiff and weak. The muscles in the groin/pelvic area (both sides) cramp with use. When I am active, it takes 2-3 days for my legs to stop aching and trembling. My GP has done a carotid artery ultrasound (normal), a brain MRI (normal), a halter test which was normal except a sometimes high heart rate, all blood tests have been normal (except high calcium/albumen once). I have seen a new neurologist twice. He did an MRI of lumbar spine (normal), says my physical exam is normal, and tried me on sinemet for dopa-responsive dystonia, which did not work. Now he tells me there is no more he can do, which in reading the information on this and other web sites, seems a bit off. After much money spent and not being believed, I guess, just want an idea of where to go, if anywhere. I'm ready to take my neuro's advice and "just live with it", but I'm only 29 and have many years ahead of me. Any GOOD neurologists in Sacramento, California area? What should I be getting tested for and with what tests?
Here is my history: About 6 months ago I began having toe and foot cramping in my right foot while driving. When holding the brake pedal for extended periods at a light it would become worse, and I began using the emergency brake to assist me in stopping and staying stopped. It felt like electricity was surging through my foot. In turn the muscles around my right pelvis/hip area became very tight and didn't have the strength to pick my leg up to move. I went to my GP who did an xray of the lumbar spine and many blood tests. Also got me in to see a neurologist the following Monday in order to rule out Guillaine Barre. Neurologist tested reflexes (no Guillaine Barre). Said that these things usually go away in a week. The only note he had was that my reflexes were hyperreflexive. Went back to my GP who sent my to physical therapy where they said I had very weak muscles (esp. right side) and scoliosis, tailbone was misaligned and pelvic tilt was off (no xray to support this and I am not overweight, live on 4 acres (therefore pretty active), and this came on suddenly). In the mean time, my symptoms begin manifesting. I have experienced severe dizziness 2-3 times (almost passing out), my foot continues to cramp while driving and twitches, I feet "internal" muscle twitches in my legs, feet, and under stress in my neck and shoulders/arms, and most prevalent is that I cannot walk for more than 20 minutes, especially on hard floors, without my foot freezing and my legs feeling extremely shaky, stiff and weak. The muscles in the groin/pelvic area (both sides) cramp with use. When I am active, it takes 2-3 days for my legs to stop aching and trembling. My GP has done a carotid artery ultrasound (normal), a brain MRI (normal), a halter test which was normal except a sometimes high heart rate, all blood tests have been normal (except high calcium/albumen once). I have seen a new neurologist twice. He did an MRI of lumbar spine (normal), says my physical exam is normal, and tried me on sinemet for dopa-responsive dystonia, which did not work. Now he tells me there is no more he can do, which in reading the information on this and other web sites, seems a bit off. After much money spent and not being believed, I guess, just want an idea of where to go, if anywhere. I'm ready to take my neuro's advice and "just live with it", but I'm only 29 and have many years ahead of me. Any GOOD neurologists in Sacramento, California area? What should I be getting tested for and with what tests?
Joanne,
By large clinical institution I mean places like the Cleveland Clinic, Emory, Mayo, Johns Hopkins, Mass General. Whatever place is closest to where you live. I have to make a 3 hour drive to mine. It's worth it... and Rose? I'd roll up my sleeve or drop my drawersor get a big ole glass of water for B-12 any day of the week. Fires up your furnace. Good luck everyone.
Because...
Fellowship Rules
By large clinical institution I mean places like the Cleveland Clinic, Emory, Mayo, Johns Hopkins, Mass General. Whatever place is closest to where you live. I have to make a 3 hour drive to mine. It's worth it... and Rose? I'd roll up my sleeve or drop my drawersor get a big ole glass of water for B-12 any day of the week. Fires up your furnace. Good luck everyone.
Because...
Fellowship Rules
Joanne,
There isn't even an upper limit on some lab "normal" ranges. After the reading I have done, I would never want mine to dip lower than 600, and I'm much happier with it over 1000. If it hits 2000, that's fine with me.
I don't think you missed anything, but if your doctor didn't check at least your methylmalonic acid (MMA) to validate that B-12 result, you are getting inferior treatment in this area.
The lower edge of "normal" simply means that the majority of people are not seriously damaged by that low level of B-12. Many people are damaged below that level, and the level may not even be accurate. In some places, the lower edge of "normal" is considered 500.
When someone has neurological symptoms, it is important to check MMA (especially if the number is below 350) because frequently the MMA will become high (as a result of too little B-12 in the tissues) before the B-12 result drops to a level that would alarm many physicians.
You can either dance around with the physician to get proper testing, or you can just begin taking at least 1000 mcg B-12 (methylcobalamin is the most efficient form)and a B complex and hope that low B-12 is your cause. Keep it up. This is not a quick fix, but it's the real thing. If low B-12 is the problem, restoring your B-12 level will stop the damage and probably allow repairs. You should have B-12 and MMA tests after weeks on the vitamin to make sure it is getting through. Most people, even with severe malabsorption from pernicious anemia, can absorb enough with that dose to bring their level up nicely.
rose
There isn't even an upper limit on some lab "normal" ranges. After the reading I have done, I would never want mine to dip lower than 600, and I'm much happier with it over 1000. If it hits 2000, that's fine with me.
I don't think you missed anything, but if your doctor didn't check at least your methylmalonic acid (MMA) to validate that B-12 result, you are getting inferior treatment in this area.
The lower edge of "normal" simply means that the majority of people are not seriously damaged by that low level of B-12. Many people are damaged below that level, and the level may not even be accurate. In some places, the lower edge of "normal" is considered 500.
When someone has neurological symptoms, it is important to check MMA (especially if the number is below 350) because frequently the MMA will become high (as a result of too little B-12 in the tissues) before the B-12 result drops to a level that would alarm many physicians.
You can either dance around with the physician to get proper testing, or you can just begin taking at least 1000 mcg B-12 (methylcobalamin is the most efficient form)and a B complex and hope that low B-12 is your cause. Keep it up. This is not a quick fix, but it's the real thing. If low B-12 is the problem, restoring your B-12 level will stop the damage and probably allow repairs. You should have B-12 and MMA tests after weeks on the vitamin to make sure it is getting through. Most people, even with severe malabsorption from pernicious anemia, can absorb enough with that dose to bring their level up nicely.
rose
Rose
My B12 was at 286. Many references I have seen say that that is at the high end of the low/normal range. You made reference to 350, just curious if I missed something there. I don't know if they did a methylmalonic acid or homocysteine test. What would that look like on blood test results? What level is high? Thank you for your reply, any light that can be shed on this is appreciated.
Fellowship Rules
Thanks for the advice. I fully agree, and I am lucky to not need referrals for my insurance. In my area, there are limited resources, so far i have been going to the neurologists my GP has recommended, but, of course the notes in the file follow me (like "advised patient with bed rest will be better in 4-6 weeks"!) I don't know how much bearing those notes have, but I certainly question it. I am going to see if we even have a clincal institution for neurology in the area. Seems to me, this undiagnosed garbage is way too common as I look through these and other forums. What a shame...Hang in there.
My B12 was at 286. Many references I have seen say that that is at the high end of the low/normal range. You made reference to 350, just curious if I missed something there. I don't know if they did a methylmalonic acid or homocysteine test. What would that look like on blood test results? What level is high? Thank you for your reply, any light that can be shed on this is appreciated.
Fellowship Rules
Thanks for the advice. I fully agree, and I am lucky to not need referrals for my insurance. In my area, there are limited resources, so far i have been going to the neurologists my GP has recommended, but, of course the notes in the file follow me (like "advised patient with bed rest will be better in 4-6 weeks"!) I don't know how much bearing those notes have, but I certainly question it. I am going to see if we even have a clincal institution for neurology in the area. Seems to me, this undiagnosed garbage is way too common as I look through these and other forums. What a shame...Hang in there.
I'm tired, so maybe I've missed something. But what was your B-12 level? Some doctors do not know how to diagnose deficiency, and we continue to deteriorate because of their ignorance.
Especially if it was 350 or lower, with your symptoms, a methylmalonic acid (and optimally a homocysteine test as well) should have been done. If either or both are high, chances are your B-12 level was actually substantially lower than the test showed, and you should be treated immediately and then tested again.
If you get a hassle about proper testing, you might consider taking the B-12 daily in doses mentioned below, along with a B complex or multivitamin.
1000 - 2000 mcg oral B-12 per day should bring you up nicely. Methylcobalamin is an especially good type of B-12.
I was disabled because of physician ignorance. It is now a long hard road back (I don't know how far back I'll come) because a doctor didn't properly diagnose me or send me to someone who would. All I needed was a harmless vitamin in large doses. I was months from death.
rose
Especially if it was 350 or lower, with your symptoms, a methylmalonic acid (and optimally a homocysteine test as well) should have been done. If either or both are high, chances are your B-12 level was actually substantially lower than the test showed, and you should be treated immediately and then tested again.
If you get a hassle about proper testing, you might consider taking the B-12 daily in doses mentioned below, along with a B complex or multivitamin.
1000 - 2000 mcg oral B-12 per day should bring you up nicely. Methylcobalamin is an especially good type of B-12.
I was disabled because of physician ignorance. It is now a long hard road back (I don't know how far back I'll come) because a doctor didn't properly diagnose me or send me to someone who would. All I needed was a harmless vitamin in large doses. I was months from death.
rose
Thank you for taking the time to read this reply. I spent many, many years in the "undiagnosed" bin with the "do not take seriously" attachment secured with a paper clip on the front of the folder. I went from doc to doc to doc to doc and none of them took my complaint seriously. For clarification, these were all "private practice" so-called "specialists" alias "neurologists". Then... I turned to the big dogs. Neurosurgeons. The good doc was affiliated with one of those nice large clinical institutions, recognized that I had a serious problem and sent me to a colleague of his inside who dealt with my kind of problem.
The reason why I am plugging this type of care is simple. "Private practice" doctors are often "outsiders" looking "in" when tit come to new techniques. "Clinical" doctors, who work and teach, have to be up-to-date on EVERYTHING. They attend seminars, etc... because the medical students need to be shown these things.
I realize that a lot of insurance companies require a referral. I couldn't get one, so I stepped out of the ring, paid for the visit, and made it into a place where the insurance company had numerous participating doctors. Referrals that don't happen for you via a private practice doc means the private practice doc has no connections and knows no one inside the institution.
I want you all to have the end result that you're plugging for. Sometimes you have to go out on a limb to get proper care and I want to see you obtain it. 29 is too young.
Thanks for your attention because...
Fellowship Rules
The reason why I am plugging this type of care is simple. "Private practice" doctors are often "outsiders" looking "in" when tit come to new techniques. "Clinical" doctors, who work and teach, have to be up-to-date on EVERYTHING. They attend seminars, etc... because the medical students need to be shown these things.
I realize that a lot of insurance companies require a referral. I couldn't get one, so I stepped out of the ring, paid for the visit, and made it into a place where the insurance company had numerous participating doctors. Referrals that don't happen for you via a private practice doc means the private practice doc has no connections and knows no one inside the institution.
I want you all to have the end result that you're plugging for. Sometimes you have to go out on a limb to get proper care and I want to see you obtain it. 29 is too young.
Thanks for your attention because...
Fellowship Rules
I went to him because of a three day migraine headache at the pleadings of my husband. I have had several physicians tell me that your face is not suppose to go numb after neck adjustments, yet the chiropractor told me it was normal.
I an sorry to hear about your face going numb. I do not have a clue as to why it would happen after a adjustment and must admit that I don't think they where connected. The doctor may have been at a lose for what to make of it. The nerves that service the face are located in the head without connection to the cervical spine, hence my lack understanding also. One chiropractor does not represent the whole of the profession as one bad mechanic represents the whole of the auto industry.Good Luck.
Well, thank you for your replies. I was never actually sent to a chiropractor. My GP sent me to physical therapy because my symptoms were of a lower back nature even though the xrays didn't show misalignments. He sent me with a presciption of "relieve pain". When I went in I told them I had no diagnosis, so the physical therapist did a physical exam and began adjusting things. I was not very happy and went right back to my GP and asked him if there was any reason for this adjusting based on xray. Getting that answer was like pulling teeth, but I eventually was told that the xrays did not support it. I am not having any more physical therapy until I am diagnosed medically. As far as MG, my husband actually heard a spot on the radio about it and was concerned about that. I don't think they have ruled that out in my case, but I'm pretty sure I have been dealing with a little incompetance in the area. Anyone know a good neurologist in the Sacramento, CA area? Thanks.
What was the reason for going to the Chiropractic Dr. in the first place?
Joanne,
"Just live with it". Something someone says when they don't have a idea of what to do next. Weak muscles will cause pelvic tilt. The thing that the PT doesn't know is that pelvic tilt and spinal misalighnment will cause irritation to the lumbar spinal roots. Irritation to the spinal cord may cause electrical imbalance throughtout the entire electrical system of the body. By checking the integrity of the spinal column the underlying cause to you problem may be found. There are many times when the cause of a problem is actually right under your nose. Without a lot of time and expense, a qualified chiropractor may be able to help you find the solution you are seeking. 29 is to young to "live with it". Try something conservative.You could call 1-800-874-1478 and ask them for help. Don't waste time and good luck!
"Just live with it". Something someone says when they don't have a idea of what to do next. Weak muscles will cause pelvic tilt. The thing that the PT doesn't know is that pelvic tilt and spinal misalighnment will cause irritation to the lumbar spinal roots. Irritation to the spinal cord may cause electrical imbalance throughtout the entire electrical system of the body. By checking the integrity of the spinal column the underlying cause to you problem may be found. There are many times when the cause of a problem is actually right under your nose. Without a lot of time and expense, a qualified chiropractor may be able to help you find the solution you are seeking. 29 is to young to "live with it". Try something conservative.You could call 1-800-874-1478 and ask them for help. Don't waste time and good luck!
I have received a couple of chiropractic treatments. Both times that that he adjusted my neck my face went numb. I was told that was normal. Within two weeks of the adjustments I was walking sideways into a wall. I have had endless neurological problems. I cannot feel my toes, I have lost my reflexes, I was diagnosed with MG and have some sort of other problem that cannot be diagnosed. All of this started within two weeks of my adjustments. I would never go to another chiro as long as I live.
Dear Joanne:
I am sorry that your having trouble with your body. I do not understand the difference in neurological exams: hyperreflexia versus normal? Did you have a postive Babinski? A normal exam and you still have muscle weakness? So, I am alittle confused. Everything has been normal (?) thus far, MRI, lab work, etc. Muscle cramping can be due to many things, but it sounds like most of the likely candidates have been ruled out with lab work, such as B12, Calcium, magnesium, etc. What have your CPK values been running when your in one of your cramping modes? What did the ischemic forearm test reveal? Is there a family history of muscle cramping? Most people can walk for 20 minutes, do you get fatigued or just get your symptoms? What did the EMG show? I think maybe going back to your neurologist and asking these questions might help.
Sincerely,
CCF Neuro MD
I am sorry that your having trouble with your body. I do not understand the difference in neurological exams: hyperreflexia versus normal? Did you have a postive Babinski? A normal exam and you still have muscle weakness? So, I am alittle confused. Everything has been normal (?) thus far, MRI, lab work, etc. Muscle cramping can be due to many things, but it sounds like most of the likely candidates have been ruled out with lab work, such as B12, Calcium, magnesium, etc. What have your CPK values been running when your in one of your cramping modes? What did the ischemic forearm test reveal? Is there a family history of muscle cramping? Most people can walk for 20 minutes, do you get fatigued or just get your symptoms? What did the EMG show? I think maybe going back to your neurologist and asking these questions might help.
Sincerely,
CCF Neuro MD
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