Aa
No lesions, now what?
HI All,
So 2 weeks have passed, after my internist said that I probably have MS. Went to a neurologist, had a MRI, all the while waiting to hear the results. Kept waiting, I finally called, asking if they had the results in. The receptionist said that yes they were in, the doctor had read them and she actually told me that the report said "with in normal findings." I was so furious with her, they said they would call me to set up a appointment when the results were in, and they did not. I do not even want to go back to this doctor or his office.
Now what, go back to my internist? He is very knowledgable about this, as his own wife has MS, so I know he knows very well what is going on with me and my symptoms.
I am at my witts end, I have been on medical leave due to my symptoms, and my leave will be up in 1 and 1/2 weeks, yet I still cannot walk that well and have no energy at all. I am very worried, scared and feel that doctors, except my internist, feel that I am making all of this up, or that they are not taking me seriously.
What is your advice? Go to a differernt neurologist? Go to a MS specialist?
So 2 weeks have passed, after my internist said that I probably have MS. Went to a neurologist, had a MRI, all the while waiting to hear the results. Kept waiting, I finally called, asking if they had the results in. The receptionist said that yes they were in, the doctor had read them and she actually told me that the report said "with in normal findings." I was so furious with her, they said they would call me to set up a appointment when the results were in, and they did not. I do not even want to go back to this doctor or his office.
Now what, go back to my internist? He is very knowledgable about this, as his own wife has MS, so I know he knows very well what is going on with me and my symptoms.
I am at my witts end, I have been on medical leave due to my symptoms, and my leave will be up in 1 and 1/2 weeks, yet I still cannot walk that well and have no energy at all. I am very worried, scared and feel that doctors, except my internist, feel that I am making all of this up, or that they are not taking me seriously.
What is your advice? Go to a differernt neurologist? Go to a MS specialist?
I am a 34 year old mother of twins and I started with optic neuritis in my right eye along with lack of sensation and movement on the right side of my body. I lost almost all of my vision in that eye and symptoms have waxed and waned. Now i have lost vision in my left eye and cannot feel my legs, I cannot walk. I have vertigo, numbness, memory trouble. ALL of my tests and scans have come back completely normal with multiple neurologists.
I'm sorry you've had to go on medical leave, but that's for the best, because you truly can't function right now in a work environment.
In my opinion, you do need a good neurologist, to work in conjunction with your internist. Please go back to Quix's lengthy post above--it contains extremely good explanations and advice.
Yes, some MSers are greatly bothered by cold, and some by both heat and cold. The big majority, though, suffer from heat-related problems. When the body temp goes up, some nerve conduction slows down and symptoms get worse. Usually this is just temporary, but it's dangerous, since permanent damage is also possible.
Please hang in there. I'm betting you do have MS, and if so, you need to be on a DMD.
ess
In my opinion, you do need a good neurologist, to work in conjunction with your internist. Please go back to Quix's lengthy post above--it contains extremely good explanations and advice.
Yes, some MSers are greatly bothered by cold, and some by both heat and cold. The big majority, though, suffer from heat-related problems. When the body temp goes up, some nerve conduction slows down and symptoms get worse. Usually this is just temporary, but it's dangerous, since permanent damage is also possible.
Please hang in there. I'm betting you do have MS, and if so, you need to be on a DMD.
ess
Hi All,
So I have taken a TEMPORARY disability from my job thru May. I am a teacher, and there is no way I can stand longer than 20 minutes without feeling as if I am going to collapse. My doc, bless his heart, still is saying MS. I am having extreme aching in my body when a snow storm is coming in, so much that I have to lay under warm blankets. Yuck, this is horrible. Traveling in the car for and hour has become difficult as well. I am fatigued and sore when the day is over. Keep having pins and needles in my feet and legs, now I have a feather like sensation in my left forearm, like someone is toucing me lightly with a feather, but nothing is there. My feet feel like I am walking on ice blocks, which is so uncomfortable. Then if I soak them in warm water, they then start to feel like they are burning.
What I am so confused about is I once was a person that did everything and I mean everything. Cooked, cleaned, laundry, full time job, mowed the yard, groceries, etc. Now I am lucky just to take out the trash and run the swiffer thru the kitchen. This is hard to deal with, yes I am a newbie, whining I guess, but boy do I feel lowsy.
Is it true that warm weather is a concern for MS. I have not had that, but cold weather really does a number on me. Anyone else with this?
So I have taken a TEMPORARY disability from my job thru May. I am a teacher, and there is no way I can stand longer than 20 minutes without feeling as if I am going to collapse. My doc, bless his heart, still is saying MS. I am having extreme aching in my body when a snow storm is coming in, so much that I have to lay under warm blankets. Yuck, this is horrible. Traveling in the car for and hour has become difficult as well. I am fatigued and sore when the day is over. Keep having pins and needles in my feet and legs, now I have a feather like sensation in my left forearm, like someone is toucing me lightly with a feather, but nothing is there. My feet feel like I am walking on ice blocks, which is so uncomfortable. Then if I soak them in warm water, they then start to feel like they are burning.
What I am so confused about is I once was a person that did everything and I mean everything. Cooked, cleaned, laundry, full time job, mowed the yard, groceries, etc. Now I am lucky just to take out the trash and run the swiffer thru the kitchen. This is hard to deal with, yes I am a newbie, whining I guess, but boy do I feel lowsy.
Is it true that warm weather is a concern for MS. I have not had that, but cold weather really does a number on me. Anyone else with this?
thanks quix that that info.
Since I last wrote, I went back to my internist, the one who suspects MS, and he said, even with the clear MRI and neurological exam, that he still suspects MS.
I was put on Prednisone for 10 days, the first 3 days were hell, but when I started tapering the dose, I noticed I was feeling better. Now that I am on my last day of the med, my only major complaint is still hand and leg weakness. I am being sent for water pool therapy for my lower legs, hoping to get some strength back, as I am normally very active and exercise.
I fully trust my internist, and feel comfortable with him. I will never go back to that neurologist. He actually told me that this is a disease I do not "want" to have. no duh! As if I want this.
When I read your post, I understand that a neurologist actually has to diagnosis the MS in order for MS drugs to be received through insurance? hopefuly I will not have to use those yet, but that is good to know.
Currently I am on a extended medical leave due to my leg issues, I am a teacher, and stand alot during the day. I so want to go back, but right now feel as if my life is leaving me, as I cannot do this job right now.
any thoughts?
You all have been great, and I so appreciate your information and help.
Since I last wrote, I went back to my internist, the one who suspects MS, and he said, even with the clear MRI and neurological exam, that he still suspects MS.
I was put on Prednisone for 10 days, the first 3 days were hell, but when I started tapering the dose, I noticed I was feeling better. Now that I am on my last day of the med, my only major complaint is still hand and leg weakness. I am being sent for water pool therapy for my lower legs, hoping to get some strength back, as I am normally very active and exercise.
I fully trust my internist, and feel comfortable with him. I will never go back to that neurologist. He actually told me that this is a disease I do not "want" to have. no duh! As if I want this.
When I read your post, I understand that a neurologist actually has to diagnosis the MS in order for MS drugs to be received through insurance? hopefuly I will not have to use those yet, but that is good to know.
Currently I am on a extended medical leave due to my leg issues, I am a teacher, and stand alot during the day. I so want to go back, but right now feel as if my life is leaving me, as I cannot do this job right now.
any thoughts?
You all have been great, and I so appreciate your information and help.
Hi, and a welcome from me, quite belatedly as I see you have been posting for a couple weeks now.
All I can say is that you should run, stumble or lurch away from that neurologist!
I have yet to hear of the open MRI machine that is powerful enough to consistently pick up MS lesions. I know they will develop one, but none of the neurologists I respect have any respect for the open machines with regard to picking up MS lesions.
Now, NO physcian's office should be run in such a way that the "receptionist" should remember that the doctor mentioned that "your" MRI was "within normal range." Your medical info is right out there being discussed.
That isn't even a phrase that is even appropriate to use with an MRI. As far as I see it, you have no information. Your MRI was done on a (probably) substandard machine and the doctor hasn't even discussed the results with you. Do you even know if it was done using MS MRI Protocol? What you need to do is to obtain the disc and the report from the place that did the imaging - not the neurologist. Usually somewhere on the report it will mention that the imaging was done wuing the MS Protocol. Then go back to your PCP who knows a thing or two about MS and ask to be sent to someone else. At the same time, ask the internist what the results showed. If they showed a lesion, then you do have some information.
However, I am concerned that the radiologist may have said your MRI was "within normal range for your age". There is this misguided idea that is bery common among radiologists and neurologists that a few lesions is normal for a person over about 40. while very small subcortical lesions are more and more common as we age, no one should see a lesion in a person with neurologic symptoms and immediately assume that lesion is merely due to age. After all, they went looking for lesions. How is it okay when they find one to say, "Oh, that's normal". The normal age-related little lesions DON'T CAUSE SYMPTOMS!
Now, the rheumatologist you mentioned in a prior post was absolutely off-the-wall when he said that MS could be excluded by the blood tests the we send looking for autoimmune diseases. Deb, I think, told you that was wrong - and she is soooo right! There are NO blood tests that we can send that will diagnose or exclude MS. Period.
An Internist is trained to take care of all aspects of an adult, regular care, preventative, high BP, diabetes, infections, GERD, etc. They are primary care docs. Neurologists are Specialists dealing only with diseases of the Nervous Systems, both peripheral and central. An MS specialist is someone who has taken an interest in MS and devotes most of his patient time to MS. Unfortunately, they are not tru Sub-Specialists because they have no formal training in MS. They don't have to have ANY real training in MS at all. Maybe they just read a good article, or reference a good textbook to find answers. A couple areas in the country do now have fellowships in MS, but there is no certification available yet.
So, we hope that all doctors who call themselves MS Specialists really are. We hope they study hard and read all there is to read on the disease, but there is nothing to guarantee this. Some here have found that their internist really knows a lot about the disease. Your internist has a reason to stay up on the MS info. That's great! Some general neuros know a great deal. Unfortunately for us, we sometimes have to kiss a lot of grogs before finding our prince.
Your gut feeling that this neuro you saw is running loose ship is likely correct. We need to have good faith in the physician that will help us through this disease. Who can diagnose MS? Typically, it is left to the neurologist. A few insurance companies will not cover the MS meds unless the diagnosis is verified by a neurologist. Also, in people with MS who have their MS care through a primary care doc, a very low percentage (less than half) make it onto one of the DMDs. So, we usually recommend looking for a good MS neuro.
Your doctor should take you seriously. You will know when you find one that does. Leave any doctor that suggests this is all made up or that you are "stressed".
Your pattern of symptoms really does suggest MS. What you need is to make sure that the rule out of mimics has been very thorough. Things like the autoimmune rule-out that was negative with your MS-ignorant Rheumie. Also things like a CBC, ANA, B12, Lyme, VDRL, HIV, ACE, are other things that should have been sent.
The other thing you need is a thorough neuro exam. If you got a lengthy, head-to-toe exam from this other neuro, then request the clinic records from him and look it over. This is where I would start. Your internist might be able to do the complete neuro exam. Certainly they are all taught to in training.
So, the info that you need is:
Did any lesions show on this pitiful open-MRI? If it was "negative" (didn't show nothin') then you need that repeated on a decent machine, a 1.5T with updated software or a 3T - using Protocol.
What did the neuro's clinical exam show? Depending on this and on the results of the MRI, you probably need an MRI with and without contrast of the cervical and thoracic spinal cord - using MS Protocol.
What blood tests have been sent and what are the results? You might need some more.
This is where I would have you start. Also, you can show any of these answers to your internist.
Quix, MD
All I can say is that you should run, stumble or lurch away from that neurologist!
I have yet to hear of the open MRI machine that is powerful enough to consistently pick up MS lesions. I know they will develop one, but none of the neurologists I respect have any respect for the open machines with regard to picking up MS lesions.
Now, NO physcian's office should be run in such a way that the "receptionist" should remember that the doctor mentioned that "your" MRI was "within normal range." Your medical info is right out there being discussed.
That isn't even a phrase that is even appropriate to use with an MRI. As far as I see it, you have no information. Your MRI was done on a (probably) substandard machine and the doctor hasn't even discussed the results with you. Do you even know if it was done using MS MRI Protocol? What you need to do is to obtain the disc and the report from the place that did the imaging - not the neurologist. Usually somewhere on the report it will mention that the imaging was done wuing the MS Protocol. Then go back to your PCP who knows a thing or two about MS and ask to be sent to someone else. At the same time, ask the internist what the results showed. If they showed a lesion, then you do have some information.
However, I am concerned that the radiologist may have said your MRI was "within normal range for your age". There is this misguided idea that is bery common among radiologists and neurologists that a few lesions is normal for a person over about 40. while very small subcortical lesions are more and more common as we age, no one should see a lesion in a person with neurologic symptoms and immediately assume that lesion is merely due to age. After all, they went looking for lesions. How is it okay when they find one to say, "Oh, that's normal". The normal age-related little lesions DON'T CAUSE SYMPTOMS!
Now, the rheumatologist you mentioned in a prior post was absolutely off-the-wall when he said that MS could be excluded by the blood tests the we send looking for autoimmune diseases. Deb, I think, told you that was wrong - and she is soooo right! There are NO blood tests that we can send that will diagnose or exclude MS. Period.
An Internist is trained to take care of all aspects of an adult, regular care, preventative, high BP, diabetes, infections, GERD, etc. They are primary care docs. Neurologists are Specialists dealing only with diseases of the Nervous Systems, both peripheral and central. An MS specialist is someone who has taken an interest in MS and devotes most of his patient time to MS. Unfortunately, they are not tru Sub-Specialists because they have no formal training in MS. They don't have to have ANY real training in MS at all. Maybe they just read a good article, or reference a good textbook to find answers. A couple areas in the country do now have fellowships in MS, but there is no certification available yet.
So, we hope that all doctors who call themselves MS Specialists really are. We hope they study hard and read all there is to read on the disease, but there is nothing to guarantee this. Some here have found that their internist really knows a lot about the disease. Your internist has a reason to stay up on the MS info. That's great! Some general neuros know a great deal. Unfortunately for us, we sometimes have to kiss a lot of grogs before finding our prince.
Your gut feeling that this neuro you saw is running loose ship is likely correct. We need to have good faith in the physician that will help us through this disease. Who can diagnose MS? Typically, it is left to the neurologist. A few insurance companies will not cover the MS meds unless the diagnosis is verified by a neurologist. Also, in people with MS who have their MS care through a primary care doc, a very low percentage (less than half) make it onto one of the DMDs. So, we usually recommend looking for a good MS neuro.
Your doctor should take you seriously. You will know when you find one that does. Leave any doctor that suggests this is all made up or that you are "stressed".
Your pattern of symptoms really does suggest MS. What you need is to make sure that the rule out of mimics has been very thorough. Things like the autoimmune rule-out that was negative with your MS-ignorant Rheumie. Also things like a CBC, ANA, B12, Lyme, VDRL, HIV, ACE, are other things that should have been sent.
The other thing you need is a thorough neuro exam. If you got a lengthy, head-to-toe exam from this other neuro, then request the clinic records from him and look it over. This is where I would start. Your internist might be able to do the complete neuro exam. Certainly they are all taught to in training.
So, the info that you need is:
Did any lesions show on this pitiful open-MRI? If it was "negative" (didn't show nothin') then you need that repeated on a decent machine, a 1.5T with updated software or a 3T - using Protocol.
What did the neuro's clinical exam show? Depending on this and on the results of the MRI, you probably need an MRI with and without contrast of the cervical and thoracic spinal cord - using MS Protocol.
What blood tests have been sent and what are the results? You might need some more.
This is where I would have you start. Also, you can show any of these answers to your internist.
Quix, MD
My very first MRI, which was ordered by my GP to look for brain tumors, was negative for lesions. It was done on an open MRI--which is usually not strong enough to detect MS lesions. Usually these open machines are less than 1T. My neurologist told me that this MRI was completely bogus and ordered another MRI in a closed machine that was a 1.5T. Lesions showed up on this MRI.
You also need an MRI of the cervical area at least. I would ask for the disc, but I would think that the MS specialist will want to order a new MRI on a closed machine that is at least 1.5T. Even better is a 3T or higher. Lesions don't have to be big to cause problems, and they can hide out if MS protocol isn't used. An MS specialist should have access to the best MRI machines available in your area.
It is hard to say anything about the internist. There's some excellent ones out there, but they generally don't have the expertise that the MS specialist has who has seen many, many people MS and knows what works and what doesn't. However, there are some good doctors out there that aren't MS specialists. I see a regular neurologist and he's fantastic.
You also need an MRI of the cervical area at least. I would ask for the disc, but I would think that the MS specialist will want to order a new MRI on a closed machine that is at least 1.5T. Even better is a 3T or higher. Lesions don't have to be big to cause problems, and they can hide out if MS protocol isn't used. An MS specialist should have access to the best MRI machines available in your area.
It is hard to say anything about the internist. There's some excellent ones out there, but they generally don't have the expertise that the MS specialist has who has seen many, many people MS and knows what works and what doesn't. However, there are some good doctors out there that aren't MS specialists. I see a regular neurologist and he's fantastic.
I would say yes yes, get a copy of the disc....the films are so small that it is very hard to see details.
also, the MS specialist will want to look at it....and you need to keep it for your records.
I know that an open MRI does not give as good/clear of a picture....and if the magnet strength was low....or they did not follow MS protocol....then lesions may have been missed. I have read of people have an MRI on a 1.5 T magnet with no lesions showing and the next day had another MRI on a 3 T magnet where it showed multiple lesions.
So the quality of the MRI equipment and following MS protocol is very important....also a Cervical and Thoracic MRI may be needed.
Here is a link to the proper MS protocol for MRI's
http://www.mscare.org/cmsc/images/pdf/mriprotocol2009.pdf
good luck and God Bless!
also, the MS specialist will want to look at it....and you need to keep it for your records.
I know that an open MRI does not give as good/clear of a picture....and if the magnet strength was low....or they did not follow MS protocol....then lesions may have been missed. I have read of people have an MRI on a 1.5 T magnet with no lesions showing and the next day had another MRI on a 3 T magnet where it showed multiple lesions.
So the quality of the MRI equipment and following MS protocol is very important....also a Cervical and Thoracic MRI may be needed.
Here is a link to the proper MS protocol for MRI's
http://www.mscare.org/cmsc/images/pdf/mriprotocol2009.pdf
good luck and God Bless!
Thanks for the input everyone. I had a open MRI with and without contrast of the brain only.
The neurologist told me I needed to get the actually films, and he would be sent a copy of the disc. Should I ask for the disc when I go to see him, so that I can bring with me to the MS specialist?
I guess it takes a long time to get an actual diagnosis of MS.
Is an internest allowed to give this diagnosis, or does it have to come from a neurologist. I would like to stay with my internest, I trust him and believe in him.
The neurologist told me I needed to get the actually films, and he would be sent a copy of the disc. Should I ask for the disc when I go to see him, so that I can bring with me to the MS specialist?
I guess it takes a long time to get an actual diagnosis of MS.
Is an internest allowed to give this diagnosis, or does it have to come from a neurologist. I would like to stay with my internest, I trust him and believe in him.
I would be upset too that your doctor has dropped you without giving you a hint as to what is causing all those problems.
I would find out the strength of the MRI machine that your MRI was performed on. If you don't know, call the center where you had it done. A weak machine is not good for detecting MS lesions. Was it an open MRI or closed? Was the MRI just of the brain? Plus, was MS protocol done? Too thick of slices will miss a lot of MS lesions--especially if it's in the early stages of MS. Did you have contrasting agent?
You deserve an explanation. Do see someone that can help you figure out what's wrong. MS does have a lot of mimics, some of which are actually worse. If your doctor has no interest in finding out what's wrong, then you need to find someone else. I would see an MS specialist.
I would find out the strength of the MRI machine that your MRI was performed on. If you don't know, call the center where you had it done. A weak machine is not good for detecting MS lesions. Was it an open MRI or closed? Was the MRI just of the brain? Plus, was MS protocol done? Too thick of slices will miss a lot of MS lesions--especially if it's in the early stages of MS. Did you have contrasting agent?
You deserve an explanation. Do see someone that can help you figure out what's wrong. MS does have a lot of mimics, some of which are actually worse. If your doctor has no interest in finding out what's wrong, then you need to find someone else. I would see an MS specialist.
I'm still very new to this forum, and still on the road to finding a diagnosis....
But, I think a doctor you are comfortable with is one of the best things you can have. If you are comfortable with your internist, I would ask him if *he* is comfortable being your main doctor. He might be, due to having the knowledge from his wifes MS.
In my opinion, talk to your internist. At the very least he can probably point you in the direction of a specialist that will be a better fit for you.
My first neurologist (I only saw her once, after my PCP had already ordered an MRI of my brain) saw nothing on the brain MRI and reluctantly agreed to a c-spine MRI due to the new symptom of vertigo. And to "rule out" MS.
Before I had that MRI done, I decided to switch to a new doctor because, while the neuro was nice enough, I did not feel I would be taken seriously, or be seen in a timely manner if I had an issue.
I'm really liking my new doctor, he is very pro-active and has told me that if this is not MS then he will keep trying to figure out what is wrong.
Good luck!
But, I think a doctor you are comfortable with is one of the best things you can have. If you are comfortable with your internist, I would ask him if *he* is comfortable being your main doctor. He might be, due to having the knowledge from his wifes MS.
In my opinion, talk to your internist. At the very least he can probably point you in the direction of a specialist that will be a better fit for you.
My first neurologist (I only saw her once, after my PCP had already ordered an MRI of my brain) saw nothing on the brain MRI and reluctantly agreed to a c-spine MRI due to the new symptom of vertigo. And to "rule out" MS.
Before I had that MRI done, I decided to switch to a new doctor because, while the neuro was nice enough, I did not feel I would be taken seriously, or be seen in a timely manner if I had an issue.
I'm really liking my new doctor, he is very pro-active and has told me that if this is not MS then he will keep trying to figure out what is wrong.
Good luck!
did you get a copy of the MRI on disc? if not...call the radiology dept and ask for one.
ask your internist for a name of a new neurologist...or call the National MS Society (they keep a list of doctors)
did you have MRI of Brain, Cervical and Thoracic spine?
you can have a clear brain MRI,....but lesions on the spine.
hope you find a good neurologist real soon.....best of luck.
ask your internist for a name of a new neurologist...or call the National MS Society (they keep a list of doctors)
did you have MRI of Brain, Cervical and Thoracic spine?
you can have a clear brain MRI,....but lesions on the spine.
hope you find a good neurologist real soon.....best of luck.
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