Aa
first neuro apointment was yesterday
Well I finally had that first dreaded visit with the Neurologist. First I have to say he was very friendly, and seems very compitent, a little in a hurry but he did listen and wrote every single symptom down. He did the complete neurological exam, said my left side was definantly the weaker of the two. During the exam he kept going back and checking my eyes, he did this several times then would go on to something else, then back to the eyes again. But he never said what he was looking at and I forgot to ask when the exam was over and we were just talking. After the exam he sat down with me and explained that YES i do have peripheral neuropathy, all three flavors (his words) Motor, Sensory and Autonomic. He wants to do a Electomyogram (and I assume this also involves a nerve conduction velocity test) so he can find out what part of the nerves are damaged, either the axon or the myelin. He said at this point he feels that whatever is going on is just in the peripheral nerves and not in the central nerves, but also admitted that he would know more once he has these test results. Then we could go from there to determine what the next step would be to a diagnosis.
At the end of our meeting I did ask him about MS and told him 4 other doctors had mentioned the possibility, and he seemed very reluctant to even discuss that possibility at this time. He just kept saying lets get the results from the EMG, see what part of the nerves are damaged, then we will know more and together we will find what is causing the damage. I got the feeling he just did NOT want to any "possibles". So I am scheduled to have the EMG Feb 5th on all four extremities, both legs and both arms.
In the meantime he wants to try to reduce the amount of headaches I am having, and prescribed two meds, Axert and Effexor XR. The Axert I am to take when I have a headache comming on and the Effexor XR I will be taking everyday. He said the Effexor will also help with the fatigue and boost my energy level.
Any information about the EMG or nerve conduction velocity test, OR the Axert or Effexor would be greatly appreciated!!!!
I guess my BIG question right now would be.....IF the EMG shows that it is the myelin that is damaged, could the damage be from MS? If I understood him right, he said if the test showed the axons damaged, there was nothing that could be done, but if it was the myelin, there was further treatment available.
So, I am back to waiting!!!! Still in Limbo-land!!!
Lisa
At the end of our meeting I did ask him about MS and told him 4 other doctors had mentioned the possibility, and he seemed very reluctant to even discuss that possibility at this time. He just kept saying lets get the results from the EMG, see what part of the nerves are damaged, then we will know more and together we will find what is causing the damage. I got the feeling he just did NOT want to any "possibles". So I am scheduled to have the EMG Feb 5th on all four extremities, both legs and both arms.
In the meantime he wants to try to reduce the amount of headaches I am having, and prescribed two meds, Axert and Effexor XR. The Axert I am to take when I have a headache comming on and the Effexor XR I will be taking everyday. He said the Effexor will also help with the fatigue and boost my energy level.
Any information about the EMG or nerve conduction velocity test, OR the Axert or Effexor would be greatly appreciated!!!!
I guess my BIG question right now would be.....IF the EMG shows that it is the myelin that is damaged, could the damage be from MS? If I understood him right, he said if the test showed the axons damaged, there was nothing that could be done, but if it was the myelin, there was further treatment available.
So, I am back to waiting!!!! Still in Limbo-land!!!
Lisa
I'm about to go to bed, but I needed to clarify something here for everyone. The nerve conduction studies WILL differentiate between myelin damage and damage to the core nerve fiber, the axon. Right now I can't give you specifics, but damage to the myelin will show a slowed conduction time and a very characteristic wave form to the signal.
Damage to the axon itself is more like to show complete or near complete (super slow) block of the signal conduction. Each form of damage has its characteristics.
Peripheral nerves also have a myelin sheath. If he finds demyelination on the NCV it would not be due to MS. The NCV only tests the peripheral nerves. Damage to the myelin can be repaired. Damage to the axon of a peripheral nerve may -depending on the cause - slowly heal. But, once the axon (which is the actual nerve fiber itself) dies, that's it. We don't know how to bring it back, because the cell which maintains the axon dies also.
Heather is correct. If he suspects the neuropathy is due to MS, which he apparently doesn't, he would do evoked potentials to see if the signal from the sensory nerves are reaching the brain and if they are slower than normal.
Autonomic neuropathy is hard to test, but there are sophisticated ways of doing it.
There is also a form of demyelination that occurs in the peripheral nervous system called Chronic Inflammatory Demyelinating Polyradiculopathy or CIDP. You can see all three flavors of neuropathy occurring in the same person in some forms of CIDP. Many forms of CIDP respond well to different treatments.
The finding that Effexor and Effexor XR are useful in treating migraine disease is fairly new. When I tried to go off my Effexor I had a return of migraines, which we had only suspected I had. The other thing that they are finding with Effexor is a reduction in the post-menopausal hot flashes. This makes sense because both migraines and hot flashes are phenomena of vascular change or instability. I love my Effexor. Sorry I don't know anything about the other drug.
Quix
Damage to the axon itself is more like to show complete or near complete (super slow) block of the signal conduction. Each form of damage has its characteristics.
Peripheral nerves also have a myelin sheath. If he finds demyelination on the NCV it would not be due to MS. The NCV only tests the peripheral nerves. Damage to the myelin can be repaired. Damage to the axon of a peripheral nerve may -depending on the cause - slowly heal. But, once the axon (which is the actual nerve fiber itself) dies, that's it. We don't know how to bring it back, because the cell which maintains the axon dies also.
Heather is correct. If he suspects the neuropathy is due to MS, which he apparently doesn't, he would do evoked potentials to see if the signal from the sensory nerves are reaching the brain and if they are slower than normal.
Autonomic neuropathy is hard to test, but there are sophisticated ways of doing it.
There is also a form of demyelination that occurs in the peripheral nervous system called Chronic Inflammatory Demyelinating Polyradiculopathy or CIDP. You can see all three flavors of neuropathy occurring in the same person in some forms of CIDP. Many forms of CIDP respond well to different treatments.
The finding that Effexor and Effexor XR are useful in treating migraine disease is fairly new. When I tried to go off my Effexor I had a return of migraines, which we had only suspected I had. The other thing that they are finding with Effexor is a reduction in the post-menopausal hot flashes. This makes sense because both migraines and hot flashes are phenomena of vascular change or instability. I love my Effexor. Sorry I don't know anything about the other drug.
Quix
Ok I can see from your post that I have confused ya'll as much as I am confused...lol...I will try my best to explain better. In October I had 4 weeks of a sensory neuropathy affect my entire left side. It felt like a bad sunburn, with no visual redness. When that left, two more areas came up on my right side, but much milder than on the left, and only stayed for a few days each time. Also in the neuro exam it is obvious that the muscles on the left side are much weaker than on the right. Also in the exam when he had me stand with feet together, head back and eyes closed I was swaying everywhere and didnt even realize it. I just knew my two daughter were laughing at me. It wasnt until later when I ask them why they busted out laughing so hard that i found out that I was swaying like a drunk woman on to much wiskey!!!
Other symptoms I am having include vertigo, not room spinning but it feels like my entire body is spinning. Kinda like when you are a kid and you and a friend hold hands and spin in cirlces then let go and you are falling all over the place and unable to keep your balance. When this happens I also experence nausea along with it. Basicly feel like I am going to puke and faint at the same time. This can happen when I stand up to quickly or even when I am just sitting and driving.
Another symptoms that I have been having for many many years, is my stomach clinching up in knots. Feels like someone has thier hand sqeezing my stomach, then letting go....over and over and over again....or squeezing and not letting go for long periods of time. When this happens the only thing that will give some relief from the nausea is vomiting. This usually last anywhere from a week to several weeks at a time.
Also urinary retention, and extremely frequent urination as frequently as every 20 to 30 minutes. Never feeling like my bladder is empty. Resulting in urinary tract infections, bladder infections and kidney infections. Also my liver enzymes were a little to high.
I have pins and needle sensations all the time in both feet. Wake every single night several times a night with either one or both hands and arms to the elbow with pins and needles and most of the time completely paralized where I cant move my fingers or feel anything that I touch. All I can feel is the pain from the pins and needles. This has been happening for years but it started with just an occasional episode and has progressed to every night. When this does happen it only last about 15 to 20 minutes and starts getting better.
Also since October I have been having a redness come over the left side of my face. It started happening occasionly when I would wake during the night, but now happens when I am awake also.
One year ago I was working 3 jobs, over 100 hours each week!!!! Now because of the constant fatigue I am down to just one job and I usually take one of my daughter to work with me to help me get thru the day. I do alot of driving and with the dizziness that has become scary at times. Also I am bending and lifting alot, causeing the vertigo to happen several times a day. The doctor ask me if I have had any falls from losing my balance and so far I have been lucky and have not had any, but i do get off balance alot.
I lose my words when I am trying to talk, forget what I am saying, forget things that have just been told to me, forget what I went into a room to get.I hear things all jumbled up that people are saying, and constantly asking people what they said because I can hear that they are saying something but alot of the time it sound like they are mumbling.
Back to the neuro exam.....bright lights of any kind bother my eyes....headlights on an oncomming vehicle at night while driving, bright sunlight, a flash on a camera if it pointed at me....so when the doctor shined his light in my eyes I reacted to the light, I dont know if that is why he kept trying it or not. He never said anything about my eyes later.
What he did say....without question....was that I do definantly have peripheral neuropathy, sensory, motor and autonomic. It is affecting my skin, muscles and internal organs from what I understood from his explaination. Skin from the sunburn feeling, pins and needles, and redness on my face. Motor in my spastic very tight muscles. Autonomic including stomach, kidneys, bladder and my inablility to hold a normal body temp of 98.6. And Im sure I am not completely understanding all this correctly.
He said he was not doing this EMG thing to test for the neuropathy (that is a definant...without question...for sure thing). But he wants to find out what part of the nerves are being damaged, the axon or the myelin. He did say that at this point in time he does feel that this is in the periperal nerves and not in the central nerves. I dont know what has brought him to this conclusion, or if he is just not wanting to commit any further theories at this time without further testing.
I have tested negative for Lupus, RA, Limes, Thyroid, Diabetes, and any number of other things that blood test can show. CT scan was normal. The only thing my many blood and urine test came back positive for in October was urinary tract infection, bronchitis, and a strep infection.
I do not think this doctor will think about possible MS unless I have another major flair up like I had in October and he is the doctor treating me at the time. And also if this test he is wanting to do shows some type of myelin damage. From what I can understand, from what he said, the test will show how quickly the signals travel from point A to point B on the nerve, and this speed of travel I guess in some way will inform him whether it is damage to the axon or the myelin. I am really not sure about this, its very hard to understand.
But I do know that being a private pay patient, with no insurance, I CAN NOT afford to humor him at $900 each leg and arm that is tested unless I feel it is absolutely neccessary. He wanted to do the test ASAP....but I have to have time to accumulate that much money, so I ask for one month to get it together. This could be another reason he is not jumping towards an MRI without the absolute need for one. From what I understand they are an extreme expense even for those with insurance!!!
I hope this helps give a clearer picture of why I am so confused and not knowing what to do. I have decided to call the doctors office and get a copy of my records so I can read furture what he is thinking or at the least what he wrote on them.
Sorry this post is so long!!!!
Other symptoms I am having include vertigo, not room spinning but it feels like my entire body is spinning. Kinda like when you are a kid and you and a friend hold hands and spin in cirlces then let go and you are falling all over the place and unable to keep your balance. When this happens I also experence nausea along with it. Basicly feel like I am going to puke and faint at the same time. This can happen when I stand up to quickly or even when I am just sitting and driving.
Another symptoms that I have been having for many many years, is my stomach clinching up in knots. Feels like someone has thier hand sqeezing my stomach, then letting go....over and over and over again....or squeezing and not letting go for long periods of time. When this happens the only thing that will give some relief from the nausea is vomiting. This usually last anywhere from a week to several weeks at a time.
Also urinary retention, and extremely frequent urination as frequently as every 20 to 30 minutes. Never feeling like my bladder is empty. Resulting in urinary tract infections, bladder infections and kidney infections. Also my liver enzymes were a little to high.
I have pins and needle sensations all the time in both feet. Wake every single night several times a night with either one or both hands and arms to the elbow with pins and needles and most of the time completely paralized where I cant move my fingers or feel anything that I touch. All I can feel is the pain from the pins and needles. This has been happening for years but it started with just an occasional episode and has progressed to every night. When this does happen it only last about 15 to 20 minutes and starts getting better.
Also since October I have been having a redness come over the left side of my face. It started happening occasionly when I would wake during the night, but now happens when I am awake also.
One year ago I was working 3 jobs, over 100 hours each week!!!! Now because of the constant fatigue I am down to just one job and I usually take one of my daughter to work with me to help me get thru the day. I do alot of driving and with the dizziness that has become scary at times. Also I am bending and lifting alot, causeing the vertigo to happen several times a day. The doctor ask me if I have had any falls from losing my balance and so far I have been lucky and have not had any, but i do get off balance alot.
I lose my words when I am trying to talk, forget what I am saying, forget things that have just been told to me, forget what I went into a room to get.I hear things all jumbled up that people are saying, and constantly asking people what they said because I can hear that they are saying something but alot of the time it sound like they are mumbling.
Back to the neuro exam.....bright lights of any kind bother my eyes....headlights on an oncomming vehicle at night while driving, bright sunlight, a flash on a camera if it pointed at me....so when the doctor shined his light in my eyes I reacted to the light, I dont know if that is why he kept trying it or not. He never said anything about my eyes later.
What he did say....without question....was that I do definantly have peripheral neuropathy, sensory, motor and autonomic. It is affecting my skin, muscles and internal organs from what I understood from his explaination. Skin from the sunburn feeling, pins and needles, and redness on my face. Motor in my spastic very tight muscles. Autonomic including stomach, kidneys, bladder and my inablility to hold a normal body temp of 98.6. And Im sure I am not completely understanding all this correctly.
He said he was not doing this EMG thing to test for the neuropathy (that is a definant...without question...for sure thing). But he wants to find out what part of the nerves are being damaged, the axon or the myelin. He did say that at this point in time he does feel that this is in the periperal nerves and not in the central nerves. I dont know what has brought him to this conclusion, or if he is just not wanting to commit any further theories at this time without further testing.
I have tested negative for Lupus, RA, Limes, Thyroid, Diabetes, and any number of other things that blood test can show. CT scan was normal. The only thing my many blood and urine test came back positive for in October was urinary tract infection, bronchitis, and a strep infection.
I do not think this doctor will think about possible MS unless I have another major flair up like I had in October and he is the doctor treating me at the time. And also if this test he is wanting to do shows some type of myelin damage. From what I can understand, from what he said, the test will show how quickly the signals travel from point A to point B on the nerve, and this speed of travel I guess in some way will inform him whether it is damage to the axon or the myelin. I am really not sure about this, its very hard to understand.
But I do know that being a private pay patient, with no insurance, I CAN NOT afford to humor him at $900 each leg and arm that is tested unless I feel it is absolutely neccessary. He wanted to do the test ASAP....but I have to have time to accumulate that much money, so I ask for one month to get it together. This could be another reason he is not jumping towards an MRI without the absolute need for one. From what I understand they are an extreme expense even for those with insurance!!!
I hope this helps give a clearer picture of why I am so confused and not knowing what to do. I have decided to call the doctors office and get a copy of my records so I can read furture what he is thinking or at the least what he wrote on them.
Sorry this post is so long!!!!
HEATHER IS CORRECT TO MY KNOWLEDGE AN EMG/NCS TEST THE NERVES OUTSIDE THE SPINAL CORD.
I HAVE HAD SEVERAL FOR 2 FAILED BACK SURGERIES AND THEY ARE DONE ON THE PARASPINAL MUSCLES AND THE LIMBS AND I ONCE ASK MY ELECTRO-MUSCULAR DOC AND SHE TOLD ME THAT THEY CAN DETECT PERIPHERIAL NEUROPATHY,RADICULOPATHY,CARPAL TUNNEL AND THEY CAN DETECT IF THE NERVES ARE NOT CONDUCTING TO THE MUSCLES.
THE EMG PART DETECTS IF THERE IS ANY MUSCLE DAMAGE AS IN MYOPATHY.
BUT I AGREE WITH HEATHER ITS NOT GONNA HURT TO HAVE IT DONE ,BUT I WOULD DEFINATLY TRY TO FUTHER THE TESTING FOR MS AND I WOULD DEFINATLY ASK ABOUT THE REPEATED VISUAL TESTING.
MANY TIMES ON FIRST TIME APPOINTMENTS OUR NEURO'S LEAVE US WITH MORE QUESTIONS WITHOUT ANSWERS.DO YOU HAVE A FOLLOW UP APPOINTMENT WITH HIM?
T-LYNN
I HAVE HAD SEVERAL FOR 2 FAILED BACK SURGERIES AND THEY ARE DONE ON THE PARASPINAL MUSCLES AND THE LIMBS AND I ONCE ASK MY ELECTRO-MUSCULAR DOC AND SHE TOLD ME THAT THEY CAN DETECT PERIPHERIAL NEUROPATHY,RADICULOPATHY,CARPAL TUNNEL AND THEY CAN DETECT IF THE NERVES ARE NOT CONDUCTING TO THE MUSCLES.
THE EMG PART DETECTS IF THERE IS ANY MUSCLE DAMAGE AS IN MYOPATHY.
BUT I AGREE WITH HEATHER ITS NOT GONNA HURT TO HAVE IT DONE ,BUT I WOULD DEFINATLY TRY TO FUTHER THE TESTING FOR MS AND I WOULD DEFINATLY ASK ABOUT THE REPEATED VISUAL TESTING.
MANY TIMES ON FIRST TIME APPOINTMENTS OUR NEURO'S LEAVE US WITH MORE QUESTIONS WITHOUT ANSWERS.DO YOU HAVE A FOLLOW UP APPOINTMENT WITH HIM?
T-LYNN
I may sound really stupid here but I did not know that Electromyography could "show" myelin damage, versus any damage from other sources. This is a complete mystery to me.
I have had numerous Nerve Conduction Studies and EMG's over the course of my life. Even when I had carpal tunnel syndrome, my tests showed nothing wrong. No damage, no impingement and lo and behold, my orthopedist, knowing me quite well, due to a car accident in 1980, totally ignored these negative findings and well ahead with surgery on both hands.
When he opened up the left palm, he found that the nerve bundle going through the wrist was so tight and so pinched off, that he said it was no wonder my hand bothered me so badly. When he operated on the right hand 5 weeks later, he said the right was worse than the left. So why then, did the EMG's and the NVC studies all come back normal? This is what he told me..."It is not unusual for these tests to MISS actual compression in the nerve bundle." He said that because of my physical complaints, he just knew that he would find problems when he operated. So you see, while these may be good tests, this lady does NOT put much stock in them. Certainly I would NOT depend on them to tell a doctor whether I had damage from myelin destruction or nerve compression. Geeesshhhhhh! But humor the doctor, go through the testing.
I personally do not think if he even suspects MS that he should be worrying with the EMG's. More information can be gained by abnormal Evoked Potentials. EVP's. Especially if he suspects MS. Or the Baier testing... Has he done any hearing tests? Frequently people with MS will have some hearing loss, usually on one side. Which I do have. This testing was done with a "tuning fork" (I think that's what it is called) and other testing.
It really seems that you have had doctor's that are running in the opposite direction when it comes to discussing the possibility of MS. Is there any reason for them to think that you do NOT have MS? I know that you have probably posted test results before, but I must admit that I cannot remember each individual that posts and what testing they have had.
I rather suspect during your examination that he found a problem with your eyes. Either Nystagnus (rapid eye movement-a shaking back and forth of the eye muscles) or Marcus Gunn pupil (A pupil that responds by constricting more to an indirect than to a direct light.) These are both common in someone with MS, but can also be present with several neurological problems. What did your doctor say about your eyes?
Lisa, please help me out, by giving me a quick overview of the testing you have done thus far and the symptoms you suffer from. Like I said, you have probably posted this before, but this Lady is brain dead this morning.
Your doctor visit probably left you confused and you must have come away from it with more questions that answers. Am I right?
Heather
I have had numerous Nerve Conduction Studies and EMG's over the course of my life. Even when I had carpal tunnel syndrome, my tests showed nothing wrong. No damage, no impingement and lo and behold, my orthopedist, knowing me quite well, due to a car accident in 1980, totally ignored these negative findings and well ahead with surgery on both hands.
When he opened up the left palm, he found that the nerve bundle going through the wrist was so tight and so pinched off, that he said it was no wonder my hand bothered me so badly. When he operated on the right hand 5 weeks later, he said the right was worse than the left. So why then, did the EMG's and the NVC studies all come back normal? This is what he told me..."It is not unusual for these tests to MISS actual compression in the nerve bundle." He said that because of my physical complaints, he just knew that he would find problems when he operated. So you see, while these may be good tests, this lady does NOT put much stock in them. Certainly I would NOT depend on them to tell a doctor whether I had damage from myelin destruction or nerve compression. Geeesshhhhhh! But humor the doctor, go through the testing.
I personally do not think if he even suspects MS that he should be worrying with the EMG's. More information can be gained by abnormal Evoked Potentials. EVP's. Especially if he suspects MS. Or the Baier testing... Has he done any hearing tests? Frequently people with MS will have some hearing loss, usually on one side. Which I do have. This testing was done with a "tuning fork" (I think that's what it is called) and other testing.
It really seems that you have had doctor's that are running in the opposite direction when it comes to discussing the possibility of MS. Is there any reason for them to think that you do NOT have MS? I know that you have probably posted test results before, but I must admit that I cannot remember each individual that posts and what testing they have had.
I rather suspect during your examination that he found a problem with your eyes. Either Nystagnus (rapid eye movement-a shaking back and forth of the eye muscles) or Marcus Gunn pupil (A pupil that responds by constricting more to an indirect than to a direct light.) These are both common in someone with MS, but can also be present with several neurological problems. What did your doctor say about your eyes?
Lisa, please help me out, by giving me a quick overview of the testing you have done thus far and the symptoms you suffer from. Like I said, you have probably posted this before, but this Lady is brain dead this morning.
Your doctor visit probably left you confused and you must have come away from it with more questions that answers. Am I right?
Heather
We have been worried about you. I just read over your post and will get back with you as soon as i can get a couple cups of coffee in me. It deserves my complete attention. Hope others will chime in before that, but I promise I will get back with you honey.
Heather
Heather
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