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Will Your Neuro Exam Get Worse If You Are Worse?
OK this is how my visit went and then I have several questions if you don't mind.
The nurse asked me question and I told her about my new symptoms that I have added to my list (we showed the picture of the eye deviation). I also discussed with her, my old symptoms and how I feel they have slowly, and steadily declined. She did a quick exam. She asked me if I felt if my problems are worse than they were last year. My husband and I both said, they have gotten worse. She said she needed to talk to the neuro and they would be back in. They always ask me if I work..and I said no..I'm a housewife/domestic goddess.
My neuro came back in and said he wanted to change rooms (we were in an office, rather than an exam room). We went down the hall and he repeated the exam she did. Almost everything she had me do, I re-did for him. He then asked me what symptom am I most bothered by. I told him it's hard to just pick one, but the one that I have everyday without fail is, spasticity (muscle tightness), and muscle spasms, and weakness. I then told him my balance issues are getting worse and I feel like I'm always falling over.
He then asked if the Baclofen helps. I said yes, but I can still feel a difference between the left side that is messed up and the right side. Some days it only takes the edge off. I also told him I feel that my right leg is sometimes involved, but not to the extent as the left. I talked with him how symptoms come and go, and how I feel my walking has declined. I reminded him how I use to be able to walk fine in 2007, then I would have these episodes. In Oct. of 2008 I developed a limp that has never left, but I could still walk some distance without feeling the leg will give. In 2009, I need a cane to walk distances. If I go to the store, or a mall, I have to have it, otherwise the left leg feels like it will give.
He then asked what my local neuro thought. I told him, my local neuro thought my symptoms and exam abnormalities fit perfectly with MS..but...She wishes I had more evidence on MRI, rather than my non-specific lesions. He said that he agrees with that statement. I told him that she performed an EMG in her office on my last visit, and how everything was very normal. She had made the statement that I wasn't even borderline on my levels and that it must be coming from the central nervous system. He mad no comment to this.
So..this is treatment idea.
First, he says that he believes my symptoms are stable from last year because my neuro exam was similar to last year. He said that if my symptoms were worse..my exam would be worse. That even though my exam is abnormal..it's not worse than last year. Second, he wants to run a blood test to see if I have a mitochondria disease. I looked up some things about these diseases, but the thought runs through my head..wouldn't that show up on an EMG, especially if it is a disease that weakens muscle tissue and robs energy from it. Third, he wants to just keep treating my symptoms. If something pops up, there should be a pill for it. And last but not least (my favorite), he doesn't really see the need for me to keep coming out this distance. My local neuro should be able to handle things. He will touch bases with her on what should be done.
I asked about re-testing for MS, and another MRI of the brain and spine...He said maybe of the brain, but he felt that the spine shouldn't be repeated ( ok..even though I have new symptoms that would point to a spinal lesion). As for MS..he said I would be atypical...and that was all he said. He said lets see what this blood test reveals, all the mimics have been eliminated, I just don't know really what more we can do for you except treat your symptoms. So I guess if I was an atypical case of MS..that means no treatment!..just more pills for symptoms.
So my questions are:
Does your exam have to change (get worse) if you are getting worse, when it's already abnormal to begin with? I feel like I'm worse than last year...and I know I've developed new abnormalities on exam. ( tremors, nystagmus).
If you have a mitochondria disease..wouldn't that show up on an EMG?
Am I getting the brush off...what should I do? My local neuro said she would DX unless a specialist back her up on her theory. Should I put her on the spot and tell her I want answers rather than just another pill?
Does anyone know a neuro that can think outside that box?
The nurse asked me question and I told her about my new symptoms that I have added to my list (we showed the picture of the eye deviation). I also discussed with her, my old symptoms and how I feel they have slowly, and steadily declined. She did a quick exam. She asked me if I felt if my problems are worse than they were last year. My husband and I both said, they have gotten worse. She said she needed to talk to the neuro and they would be back in. They always ask me if I work..and I said no..I'm a housewife/domestic goddess.
My neuro came back in and said he wanted to change rooms (we were in an office, rather than an exam room). We went down the hall and he repeated the exam she did. Almost everything she had me do, I re-did for him. He then asked me what symptom am I most bothered by. I told him it's hard to just pick one, but the one that I have everyday without fail is, spasticity (muscle tightness), and muscle spasms, and weakness. I then told him my balance issues are getting worse and I feel like I'm always falling over.
He then asked if the Baclofen helps. I said yes, but I can still feel a difference between the left side that is messed up and the right side. Some days it only takes the edge off. I also told him I feel that my right leg is sometimes involved, but not to the extent as the left. I talked with him how symptoms come and go, and how I feel my walking has declined. I reminded him how I use to be able to walk fine in 2007, then I would have these episodes. In Oct. of 2008 I developed a limp that has never left, but I could still walk some distance without feeling the leg will give. In 2009, I need a cane to walk distances. If I go to the store, or a mall, I have to have it, otherwise the left leg feels like it will give.
He then asked what my local neuro thought. I told him, my local neuro thought my symptoms and exam abnormalities fit perfectly with MS..but...She wishes I had more evidence on MRI, rather than my non-specific lesions. He said that he agrees with that statement. I told him that she performed an EMG in her office on my last visit, and how everything was very normal. She had made the statement that I wasn't even borderline on my levels and that it must be coming from the central nervous system. He mad no comment to this.
So..this is treatment idea.
First, he says that he believes my symptoms are stable from last year because my neuro exam was similar to last year. He said that if my symptoms were worse..my exam would be worse. That even though my exam is abnormal..it's not worse than last year. Second, he wants to run a blood test to see if I have a mitochondria disease. I looked up some things about these diseases, but the thought runs through my head..wouldn't that show up on an EMG, especially if it is a disease that weakens muscle tissue and robs energy from it. Third, he wants to just keep treating my symptoms. If something pops up, there should be a pill for it. And last but not least (my favorite), he doesn't really see the need for me to keep coming out this distance. My local neuro should be able to handle things. He will touch bases with her on what should be done.
I asked about re-testing for MS, and another MRI of the brain and spine...He said maybe of the brain, but he felt that the spine shouldn't be repeated ( ok..even though I have new symptoms that would point to a spinal lesion). As for MS..he said I would be atypical...and that was all he said. He said lets see what this blood test reveals, all the mimics have been eliminated, I just don't know really what more we can do for you except treat your symptoms. So I guess if I was an atypical case of MS..that means no treatment!..just more pills for symptoms.
So my questions are:
Does your exam have to change (get worse) if you are getting worse, when it's already abnormal to begin with? I feel like I'm worse than last year...and I know I've developed new abnormalities on exam. ( tremors, nystagmus).
If you have a mitochondria disease..wouldn't that show up on an EMG?
Am I getting the brush off...what should I do? My local neuro said she would DX unless a specialist back her up on her theory. Should I put her on the spot and tell her I want answers rather than just another pill?
Does anyone know a neuro that can think outside that box?
Quix isn't currently active on the forum, though she may read your message.
If you do decide to post the message, please be aware that these boards are public, meaning anyone anywhere can read them. If you feel comfortable with that, you may consider starting a new post (this one's a little old and might not get the attention you deserve).
If you do decide to post the message, please be aware that these boards are public, meaning anyone anywhere can read them. If you feel comfortable with that, you may consider starting a new post (this one's a little old and might not get the attention you deserve).
Hello Quix,
I just wrote a very long story to you and tried to send it as a message on your profile but the site won't let me. Keeps saying it's too long. Is there another way I can get my story to you? I truly believe you would be interested to hear it and feel that others can benefit as well. Should I just post it here? It's a real doozy...(Another unhappy, frustrated MS limbo-lander)
Please advise. Thanks so much
Maria
I just wrote a very long story to you and tried to send it as a message on your profile but the site won't let me. Keeps saying it's too long. Is there another way I can get my story to you? I truly believe you would be interested to hear it and feel that others can benefit as well. Should I just post it here? It's a real doozy...(Another unhappy, frustrated MS limbo-lander)
Please advise. Thanks so much
Maria
Quix- LOL ..I know it's not funny, but I do get a kick out of it when you get fired up.
"Can my lesions be seen with MS?" I brought this very question up to my GP. She thought they could. I even admitted to her that I have been on the internet searching for any clues to what I have, not just MS. I told her I feel there should be a repeat of some of my test and another MRI of the brain and spine, because I feel like there is damage that should be pick up on by now. Whether someone will order this, I'm not sure.
I explained to her how I felt like I wasn't heard at CC...how he thought my symptoms were better (even though I'm on meds to prevent the symptom)...how I've added new symptoms and how in 2007 I went from walking..2008 walking with a limp..2009 needing a cane for longer distances. I also added the fear of what will I be like in the near future if this is what I've become in 3 short years. My GP said I had every right to be frustrated and that she was frustrated for me. She said I had a right to know what is going on and these neuros aren't listening to me.
I mentioned NYU as well and that's when she said let's try something local and then will go from there. I have to do something, but I do feel better knowing that I do have some doctors backing me up. My GP said," I think you have MS. Your opthamologist thinks you have MS. You will probably have a uro-gyn on board when we have these test result in from the test they will run. We can't be all wrong!!" Did I mention I love my GP?
twopack- Xenia from Cleveland was a tiring trip, and I didn't even stop to see the Rock N Roll Hall of Fame. I did try OSU in 2008, but they wouldn't let me in the front door. I've heard it's a wonderful place though, but I guess my lesions didn't even qualify me for a visit.
I'm sorry your going through this too, but hopefully you'll get some answers when you go to Green. Don't you wish that you could have went to one doctor and get diagnosed, rather than have to go to another? Hopefully, you won't be in limbo for very long. I'll cross my fingers for you.
"Can my lesions be seen with MS?" I brought this very question up to my GP. She thought they could. I even admitted to her that I have been on the internet searching for any clues to what I have, not just MS. I told her I feel there should be a repeat of some of my test and another MRI of the brain and spine, because I feel like there is damage that should be pick up on by now. Whether someone will order this, I'm not sure.
I explained to her how I felt like I wasn't heard at CC...how he thought my symptoms were better (even though I'm on meds to prevent the symptom)...how I've added new symptoms and how in 2007 I went from walking..2008 walking with a limp..2009 needing a cane for longer distances. I also added the fear of what will I be like in the near future if this is what I've become in 3 short years. My GP said I had every right to be frustrated and that she was frustrated for me. She said I had a right to know what is going on and these neuros aren't listening to me.
I mentioned NYU as well and that's when she said let's try something local and then will go from there. I have to do something, but I do feel better knowing that I do have some doctors backing me up. My GP said," I think you have MS. Your opthamologist thinks you have MS. You will probably have a uro-gyn on board when we have these test result in from the test they will run. We can't be all wrong!!" Did I mention I love my GP?
twopack- Xenia from Cleveland was a tiring trip, and I didn't even stop to see the Rock N Roll Hall of Fame. I did try OSU in 2008, but they wouldn't let me in the front door. I've heard it's a wonderful place though, but I guess my lesions didn't even qualify me for a visit.
I'm sorry your going through this too, but hopefully you'll get some answers when you go to Green. Don't you wish that you could have went to one doctor and get diagnosed, rather than have to go to another? Hopefully, you won't be in limbo for very long. I'll cross my fingers for you.
You say my neuro is a weenie? Ah so. And thus she is my ex.
Ever feel like you're tilting at windmills????????
Ever feel like you're tilting at windmills????????
You know how I feel about all this. "Waiting for the perfect lesion" is like ignoring a hurricane with atypical winds. The damage is the same, but by not recognizing it, they fail to warn the residents of the impending danger.
This makes me so mad, because the standard by which your diagnosis would be made is not "classic, big lesions" but lesions which are "consistent with MS." So the question is: "CAN" your MRI lesions be seen in MS?" If so, they are "consistent with MS".
Elaine had a ot of contact with Dr.'s Herbert and Kister of NYU. They actually have told their patients that lesions need be only consistent and that, with the proper history and physical, only one or two lesions would be needed for diagnosis. They did say that they would be hard-pressed to give the diagnosis in someone with repeated good images that were truly normal, but not if there at least one or some to see.
If the local contact fails, is there anyway you could get to NYC? You can contact Elaine (Monotreme) for any details you might like).
Twopack - your neuro is a weinie! She needs to grow a pair!
I can't emphasize enough the folly of expecting classic lesions in the face of a history and physical exam (plus rule-outs) that say "MS".
This whole mess enrages me!
Quix, the furious
This makes me so mad, because the standard by which your diagnosis would be made is not "classic, big lesions" but lesions which are "consistent with MS." So the question is: "CAN" your MRI lesions be seen in MS?" If so, they are "consistent with MS".
Elaine had a ot of contact with Dr.'s Herbert and Kister of NYU. They actually have told their patients that lesions need be only consistent and that, with the proper history and physical, only one or two lesions would be needed for diagnosis. They did say that they would be hard-pressed to give the diagnosis in someone with repeated good images that were truly normal, but not if there at least one or some to see.
If the local contact fails, is there anyway you could get to NYC? You can contact Elaine (Monotreme) for any details you might like).
Twopack - your neuro is a weinie! She needs to grow a pair!
I can't emphasize enough the folly of expecting classic lesions in the face of a history and physical exam (plus rule-outs) that say "MS".
This whole mess enrages me!
Quix, the furious
Sorry you are having such a hard time finding a doc with whatever it takes to risk actually committing the diagnosis to paper. If all my neuro needed was a note from a specialist, I'd be thinking of getting to know a forgery expert. JK......really.
You live in Xenia and go all the way up to Cleveland? Isn't there someone at OSU or in the Columbus area? There's a MS clinic in Green but they're scheduling new appointments about three months out. I'm going there next month. Come to think of it.....I'm going because my neuro retracted her MS diagnosis after thinking about it for two weeks. Instead of talking treatment as planned, she told me she had decided she wanted someone else to decide. I agree with her. Refer -obtain records - adios.
You live in Xenia and go all the way up to Cleveland? Isn't there someone at OSU or in the Columbus area? There's a MS clinic in Green but they're scheduling new appointments about three months out. I'm going there next month. Come to think of it.....I'm going because my neuro retracted her MS diagnosis after thinking about it for two weeks. Instead of talking treatment as planned, she told me she had decided she wanted someone else to decide. I agree with her. Refer -obtain records - adios.
Well, this is how things have gone so far:
My GP wanted to see me over the progress with my diagnosis, and with my current incontinence issues. Last year I developed, what the doctors are calling neurological symptoms with the bladder, plus I do have a prolapse bladder. My Gyn referred me to a urologist gynecologist for testing to help with this issue, and to find out whether or not it is neurological problems. My GP & Gyn is hoping that if it is neurological problems with my bladder, it might add more evidence to MS as the diagnosis.
My GP and I had a discussion over my lack of diagnosis and how all the mimics have been eliminated. She said she felt I did have MS. She asked how my appointment went with Cleveland and asked my opinion on why I felt my local neuro and Cleveland was not diagnosing. I told her I felt it was because of those non-typical lesions. I've been told by these doctors many times, that my exam, and symptoms fit perfectly with MS, so to me that is the only hang up.
They want to see bigger, typical lesions, in the typical places. I don't want to wait that long, if you know what I mean. If I'm already feeling this bad now, and experiencing problems walking now, what will I be like when I do fit the typical picture according to the MRI scan? This was my argument. I also said that my clinical case should have some standing.
My GP agreed that I shouldn't have to wait. Her idea was to ask a friend of hers (a neurologist) that she went to school with, to look at my medical case. According to my GP, she doesn't take new patients, even if she begs or pleads with her, but she might look at mine. She wants to get her opinion on my case. If she can DX, I can get medicine. If not, we then will look for an out of state place to go to.
I've notice that there is a big difference of opinion among doctors about lesions in general. I've had an internist, several radiologist, my GP, and several other doctors that I can't remember right now, tell me that my white matter lesions aren't normal to have. But then I had the neuros tell me, they are normal, and probably half the population has them. Those neuros don't even blink or even say anything, when I tell them that I had an MRI in 1999 and those lesions didn't exists, so why do I have them now. I guess it is a matter of opinion but I think all people should be looked at closely,that have any kind of lesions with an abnormal neuro exam, rather than brushing off the non typical lesions as nothing.
Take Care
My GP wanted to see me over the progress with my diagnosis, and with my current incontinence issues. Last year I developed, what the doctors are calling neurological symptoms with the bladder, plus I do have a prolapse bladder. My Gyn referred me to a urologist gynecologist for testing to help with this issue, and to find out whether or not it is neurological problems. My GP & Gyn is hoping that if it is neurological problems with my bladder, it might add more evidence to MS as the diagnosis.
My GP and I had a discussion over my lack of diagnosis and how all the mimics have been eliminated. She said she felt I did have MS. She asked how my appointment went with Cleveland and asked my opinion on why I felt my local neuro and Cleveland was not diagnosing. I told her I felt it was because of those non-typical lesions. I've been told by these doctors many times, that my exam, and symptoms fit perfectly with MS, so to me that is the only hang up.
They want to see bigger, typical lesions, in the typical places. I don't want to wait that long, if you know what I mean. If I'm already feeling this bad now, and experiencing problems walking now, what will I be like when I do fit the typical picture according to the MRI scan? This was my argument. I also said that my clinical case should have some standing.
My GP agreed that I shouldn't have to wait. Her idea was to ask a friend of hers (a neurologist) that she went to school with, to look at my medical case. According to my GP, she doesn't take new patients, even if she begs or pleads with her, but she might look at mine. She wants to get her opinion on my case. If she can DX, I can get medicine. If not, we then will look for an out of state place to go to.
I've notice that there is a big difference of opinion among doctors about lesions in general. I've had an internist, several radiologist, my GP, and several other doctors that I can't remember right now, tell me that my white matter lesions aren't normal to have. But then I had the neuros tell me, they are normal, and probably half the population has them. Those neuros don't even blink or even say anything, when I tell them that I had an MRI in 1999 and those lesions didn't exists, so why do I have them now. I guess it is a matter of opinion but I think all people should be looked at closely,that have any kind of lesions with an abnormal neuro exam, rather than brushing off the non typical lesions as nothing.
Take Care
I was wondering if you've gotten anywhere since you posted this? I was told years ago that the brain lesions I had at that time "weren't typical of MS" although I had many symptoms. Every neurologist seems to have a different opinion. The last two I've seen have told me that there is nothing "typical" of MS it is so variable. Today I have more lesions and haven't been told that since.
By the way, it is very highly recommended that a person be started on treatment at the first signs of MS so in my opinion in your situation to need to get a dx from whatever doc you can so you can get on treatment asap b/c the sooner the better.
I've wondered a lot about how lesions and disease progression are related. There are a lot of different opinions about this. But I know for a fact that the MS doc I have been seeing is one of the best- people come from all over the state to see him and some from other states as well and he has told me that my lesions could do anything.
By the way, it is very highly recommended that a person be started on treatment at the first signs of MS so in my opinion in your situation to need to get a dx from whatever doc you can so you can get on treatment asap b/c the sooner the better.
I've wondered a lot about how lesions and disease progression are related. There are a lot of different opinions about this. But I know for a fact that the MS doc I have been seeing is one of the best- people come from all over the state to see him and some from other states as well and he has told me that my lesions could do anything.
Yep, it is ridiculous to say that someone is "improving" because they are responding to medication. What a brainless statement. I guess my response would be
what?
what?
-coldnhot..Thank you for the concern. I'm glad that you did find a doctor that was able to diagnose you...That keeps me hopeful that one day I'll find my doctor someday too.
That is wonderful that you are having some relief with Aricept. My father is on this drug because of previous strokes that he has suffered, and now he has some dementia. I believe a lot of neuros need to educate themselves to give the best possible medication out there to relieve MS symptoms. It seems that some patients will get the best, while others don't, because the neuros just don't know about the use for these drugs for these purposes.
Quix- As always, your a big help..Thank you! I've looked up some things about mitochondria disease and I'm currently awaiting my blood test results. They are suppose to be back this week. I thought an EMG might be abnormal but I'm not sure either. Mine last EMG was perfect and showed no abnormalities.
I'm so frustrated with trying to find a diagnosis, I could scream. The neuro at CC even said that he thought my symptoms must be getting better since I don't have migraines or seizures. My thought on this comment was..1. I never went to a neuro recently for migraines. 2. I'm on Topamax, that controls migraines and seizures, so wouldn't that indicate that the medication is working, rather than my symptoms improving?
Yes, I had a migraine back in 1999, and I told them of this, in my medical history. I woke up with slurred speech, weakness, left eye sluggish pupil response, and no gag reflex that lasted for days. The doctors ran a battery of test. The only thing that came back abnormal, was a EEG..which showed slowing over the temporal lobe..diagnosis, focal seizure.
As far as the seizures, I had one in 2007..tonic clonic, but when I went to my first neuro, he didn't believe I even had one, even though I lost control of my bladder during the episode. He even said the one prior episode in 1999 might have been a migraine episode..so your guess is as good as mine. All I know is, my GP put me on Topamax, and I haven't had any problems for a long time with migraines (since I can't remember) and seizures (since 2007).
That statement he made just doesn't make sense to me. I just shook my head and reminded him ..that was my medical history and not what brought me to him.
That is wonderful that you are having some relief with Aricept. My father is on this drug because of previous strokes that he has suffered, and now he has some dementia. I believe a lot of neuros need to educate themselves to give the best possible medication out there to relieve MS symptoms. It seems that some patients will get the best, while others don't, because the neuros just don't know about the use for these drugs for these purposes.
Quix- As always, your a big help..Thank you! I've looked up some things about mitochondria disease and I'm currently awaiting my blood test results. They are suppose to be back this week. I thought an EMG might be abnormal but I'm not sure either. Mine last EMG was perfect and showed no abnormalities.
I'm so frustrated with trying to find a diagnosis, I could scream. The neuro at CC even said that he thought my symptoms must be getting better since I don't have migraines or seizures. My thought on this comment was..1. I never went to a neuro recently for migraines. 2. I'm on Topamax, that controls migraines and seizures, so wouldn't that indicate that the medication is working, rather than my symptoms improving?
Yes, I had a migraine back in 1999, and I told them of this, in my medical history. I woke up with slurred speech, weakness, left eye sluggish pupil response, and no gag reflex that lasted for days. The doctors ran a battery of test. The only thing that came back abnormal, was a EEG..which showed slowing over the temporal lobe..diagnosis, focal seizure.
As far as the seizures, I had one in 2007..tonic clonic, but when I went to my first neuro, he didn't believe I even had one, even though I lost control of my bladder during the episode. He even said the one prior episode in 1999 might have been a migraine episode..so your guess is as good as mine. All I know is, my GP put me on Topamax, and I haven't had any problems for a long time with migraines (since I can't remember) and seizures (since 2007).
That statement he made just doesn't make sense to me. I just shook my head and reminded him ..that was my medical history and not what brought me to him.
You asked about the diagnosis of mitochondrial disease. The definitive diagnosis is made by some combination of DNA analysis (for those that are known to be genetic), muscle biopsy, blood or CSF lactate concentration, MRI and MRI Spectroscopy, and cardiac eval.
I think EMG might be abnormal, but it would be non-specific. I am not sure of this.
Quix
I think EMG might be abnormal, but it would be non-specific. I am not sure of this.
Quix
I just answered your very kind message to me, but I am soooo glad to see your post here. I would like you to please copy and paste this wonderful post of yours to a New Thread/Question. Sometimes when you introduce yourself on another person's question, all your information can be missed.
When you do re-post please add more white space (a double space between short paragraphs. Those of us with difficulty tracking with our eyes find that we loose opur place with large pieces of unbroken text.
To answer your questions.
We have become very tired of the waste basket diagnosis of "complex" migraine to answer ongoing neurologic deficits.
The diagnosis of uveitis is likely correct as it is fairly simple to diagnose form the signs on the eye exam. There are many reports in the MS literature about uveitis and iritis as some of the visual problems in MS. Too bad not that many neurologists and neuro-ophthalmologists seem to have learned this.
The research "specialist" you saw in 2006 who dismissed "nonspecific" lesions was D.U.M.B. - a Doctor with Unexplained Medical Beliefs. see the following recent thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/DUMB---Disorders-in-Doctors-/show/1116530
When the clinical data is sufficient, the MRI need only show lesions "consistent" with MS, NOT lesions that are "classic" for MS. We constantly rale against these numbskulls!
I am so glad that you made you way to a doctor that Listened to you, Looked at you and THOUGHT with his big-boy brain! This is what we want for everyone!
Actually significant cognitive problems are common even when the other physical symptoms of MS are not that severe - and common in RRMS.
You also make a point that the use of the best MRI machine around is important for those who do not present classically and are not being diagnosed. I used to say that this meant a higher powered MRI machine like a 3T, but a lot of the power in the resolution of the machine is in the software and the "receiving" unit, so that a 1.5T with great software can be better than a ho-hum 3T machine.
I do agree with every thing that you say except that I would say that there ARE cases of "typical MS". That is why so many mediocre neuros reject those who have "atypical" features - whether they be symptoms or MRI lesions.
I'm sorry that your symptoms seem to be escalating with little reprieve and that you are having the breathing problems associated with spasticity of the chest wall and weakening breathing strength. Are you under the care of a pulmonologist? If not, I would recommend an evaluation to see if there is any type of help for your problems.
The determination of whether a person is transitioning from RRMS to SPMS should be made on the basis of symptom behavior. It is NOT an MRI assessment. I recently wrote an answer about this. I'll see if I can find it and bump up the discussion. Just so you know, to "bump up" a discussion means to add a comment to the bottom of it. This "bumps" it to the top of the first page. You need to check at the top of the first page right at the top of all of the discussions for the drop-down box that can let you choose to see the threads listed by "Last post" or by "Date Started". You all probably want to choose "Last Post" so you always can see the most recent comments by everyone.
Never worry about long answers. Sometimes we have a lot to say. (and I always have a lot to say. I am the President and Founder of the support group for people who talk too much - ON-AND-ON-ANON) More info is better than less.
I'm sure Slightlybroken doesn't mind that you feel concern for her.
I hope to see you with your own Discussion where we can talk further.
Quix
When you do re-post please add more white space (a double space between short paragraphs. Those of us with difficulty tracking with our eyes find that we loose opur place with large pieces of unbroken text.
To answer your questions.
We have become very tired of the waste basket diagnosis of "complex" migraine to answer ongoing neurologic deficits.
The diagnosis of uveitis is likely correct as it is fairly simple to diagnose form the signs on the eye exam. There are many reports in the MS literature about uveitis and iritis as some of the visual problems in MS. Too bad not that many neurologists and neuro-ophthalmologists seem to have learned this.
The research "specialist" you saw in 2006 who dismissed "nonspecific" lesions was D.U.M.B. - a Doctor with Unexplained Medical Beliefs. see the following recent thread:
http://www.medhelp.org/posts/Multiple-Sclerosis/DUMB---Disorders-in-Doctors-/show/1116530
When the clinical data is sufficient, the MRI need only show lesions "consistent" with MS, NOT lesions that are "classic" for MS. We constantly rale against these numbskulls!
I am so glad that you made you way to a doctor that Listened to you, Looked at you and THOUGHT with his big-boy brain! This is what we want for everyone!
Actually significant cognitive problems are common even when the other physical symptoms of MS are not that severe - and common in RRMS.
You also make a point that the use of the best MRI machine around is important for those who do not present classically and are not being diagnosed. I used to say that this meant a higher powered MRI machine like a 3T, but a lot of the power in the resolution of the machine is in the software and the "receiving" unit, so that a 1.5T with great software can be better than a ho-hum 3T machine.
I do agree with every thing that you say except that I would say that there ARE cases of "typical MS". That is why so many mediocre neuros reject those who have "atypical" features - whether they be symptoms or MRI lesions.
I'm sorry that your symptoms seem to be escalating with little reprieve and that you are having the breathing problems associated with spasticity of the chest wall and weakening breathing strength. Are you under the care of a pulmonologist? If not, I would recommend an evaluation to see if there is any type of help for your problems.
The determination of whether a person is transitioning from RRMS to SPMS should be made on the basis of symptom behavior. It is NOT an MRI assessment. I recently wrote an answer about this. I'll see if I can find it and bump up the discussion. Just so you know, to "bump up" a discussion means to add a comment to the bottom of it. This "bumps" it to the top of the first page. You need to check at the top of the first page right at the top of all of the discussions for the drop-down box that can let you choose to see the threads listed by "Last post" or by "Date Started". You all probably want to choose "Last Post" so you always can see the most recent comments by everyone.
Never worry about long answers. Sometimes we have a lot to say. (and I always have a lot to say. I am the President and Founder of the support group for people who talk too much - ON-AND-ON-ANON) More info is better than less.
I'm sure Slightlybroken doesn't mind that you feel concern for her.
I hope to see you with your own Discussion where we can talk further.
Quix
I was reading what slightlybroken wrote, what you told her & I feel for her. What she is going through sounds like went I went through. I'm seeing an MS specialist who has been able to treat problems that I have or have had that other neuros missed for yrs. I first saw a neuro @ 7 yrs ago & several months prior had what doc feels was most likely my 1st attack. My legs went numb for several weeks, couldn't stand no matter what I did.or sgot better but I never saw a doc about it. I ended up seeing neuro #1 when referred to him by my primary when he did an mri for back pain. this neuro s/ my leg issue was migraine & nothing else. MRI report s/ I had a few nonspecific white matter changes unusual for my age-@ 37 then. Dx list included possible MS but neuro told me MRI was normal, all I had wrong was AS I've had for years. Either b/f or after that had a problem with one eye, went to my primary who dx'ed me with "Uevitis"-today I wonder if it could have been optic neurotis. It was very painful and vision was blurry in it.
Fast forward to 2006, I moved,went to new primary for a small pitituitary tumore that was harmless but supposed to be checked that I'd never followed up on. My legs, one arm was weak, he did an MRI of my brain, I was suprised when he referred me to a neuro. This MRI showed white matter lesions ,possible dymylineating disease was listed in dx's given.He S/ MS. I didn't believe him, but called him back when at work one day I felt like I couldn't stand up. He put me in the hospital, gave me solu-medrol and the problems disappeared. I had also been having severe fatigue during this. He advised me to start a DMD. I rdecided not to but learned of a study being done by a specialist for those who had never been on one and were newly diagnosed. I decided to check into this and went to him only days after being in the hospital. He spent about 10 minutes with me, said I did not have MS, that my neuro exam was normal. Today I think maybe that was b/c only days before I had had the solu-medrol but I don't know. I felt good for several months then got hit me hard. I fell in a store and began having what I now know was severe spasticity in my legs and my left side had become very weak. I started to think I was imagining things.
I've AS for years so went to a reheumatologist. He thought there was a neuro problem or vascular so ref. me to a diff. neuro & vascular surgeon. I went to the vascular first and he did tests & s/ it was a neuro problem, then saw the neuro who said MS, and it was the last thing I ever expected due to what this specialist had said. I got my records from him and he had listed several neuro tests he had done while "examining me" that he never did and said in his report that all were negative. These were things like the babinski test, b/c never had me take my shoes off so couldn't have done it (this new neuro later told me this was positive and told me what it was). This doc examined me for over an hour, reviewed all records and much to my suprised came back to me and said he MS and told, me in great detail why. I protested telling him that the specialist said what he said. He s/ he has a lot of ms patients and he was sure of it anyway. I took his advice and began copaxone. After seeing him for over a year, he told me he felt like a specialist could better treat me than he could. and ref. me to the one I now see. The specialist that I see today is one that people told me repeatedly for a year, including nurses, I just had to see. So I finally went to see him, he said yes i had MS, assured me I wasn't crazy. I had lost a lot of my memory and several cognitive problems which to me seemed unusual b/c I just had RR ms and not PP and kept reading that a high % of ms patients have cognitive issues, only 5-10% have them bad enough to interfere with daily life and those are usually seen only in advanced cases. But I had a neuro/psych eval which showed no mental health issues but moderate to severe cognitive problems specific to ms. He put me on Aricept and all I can say about that is that I wish more docs knew about what a miracle drug that can be for someone with cognitive issues that need to be treated.
Let peope/docs if you can know how successful Aricept may be for ms patients. I know only a few small studies have been done to date and other docs don't seem infromed of this. I feel like I have been give a whole new brain. I was functioning like someone much older with dementia would except that at my age, no one got it.
It took me longer than I meant to but what I wanted to ask you when I read her post was do you believe this- I have concluded this after my experience and stories I've heard from a lot of others with ms, that even a lot of general neurologists don't know how to treat a patient with ms, unless it's very obvious from the start.
I also strongly believe that there is no such thing as "typical ms". My current doc said that he believes that there is no such thing as lesions "typical of ms" because it is such a variable disease, there are so many symptoms and no two cases area just alike.
It seems like it really does take a specialist. He did MRI's, uses machines that are 3 times more powerful than the commonly used ones and the one he did on me showed more and larger lesions than my other mri's and there was nothing said about "lesions not typical of ms".
I'm sorry this is so long. Most of this I probably should have written her and told her about but with you being a doc your better to tell her things like this if you feel this way also & would help her.
Would you agree with all of this? I have problems not listed in literature but have heard from others who have it that it is from ms- such as a lot of weight loss, trouble eating, bad reaction to not just heat but extreme cold, and then what a lot of others have- using a cane, balance, muscle,spasticity and eye problems. I also noticed it's hard for me to take a deep breathe, cough hard or sing & have spasticity under my ribcage & my PT s/ my diaphram muscles are very weak.
Lastly I do have one other question. My symptoms have been worsening, I seem to be having a very long relapse or either they have become permanent, I now walk with a cane and I wonder what determines when a person goes from RR to SPMS. My last MRI was in August, didn't say I had advanced ms and my next appt is in January with my doc and I know I need to discuss this with him but I want to learn what I can now about this prior to seeing him.
What are your thoughts on this? Is this typically determined by symptoms or MRI or anything else? The aricle on medhelp states lesion load isn't always correlated with disease progression & lesions don't nec determine symptoms.
. To me the fact that I've had to begin using a cane is unsettling, I knew walking was becoming more and more difficult but only when having a PT eval did I begin using the cane when the pt said it was really dangerous for me not to.I'd appreciate your input on this and sorry this is so long. I mainly set out to write out of concern for her.
Thanks
Fast forward to 2006, I moved,went to new primary for a small pitituitary tumore that was harmless but supposed to be checked that I'd never followed up on. My legs, one arm was weak, he did an MRI of my brain, I was suprised when he referred me to a neuro. This MRI showed white matter lesions ,possible dymylineating disease was listed in dx's given.He S/ MS. I didn't believe him, but called him back when at work one day I felt like I couldn't stand up. He put me in the hospital, gave me solu-medrol and the problems disappeared. I had also been having severe fatigue during this. He advised me to start a DMD. I rdecided not to but learned of a study being done by a specialist for those who had never been on one and were newly diagnosed. I decided to check into this and went to him only days after being in the hospital. He spent about 10 minutes with me, said I did not have MS, that my neuro exam was normal. Today I think maybe that was b/c only days before I had had the solu-medrol but I don't know. I felt good for several months then got hit me hard. I fell in a store and began having what I now know was severe spasticity in my legs and my left side had become very weak. I started to think I was imagining things.
I've AS for years so went to a reheumatologist. He thought there was a neuro problem or vascular so ref. me to a diff. neuro & vascular surgeon. I went to the vascular first and he did tests & s/ it was a neuro problem, then saw the neuro who said MS, and it was the last thing I ever expected due to what this specialist had said. I got my records from him and he had listed several neuro tests he had done while "examining me" that he never did and said in his report that all were negative. These were things like the babinski test, b/c never had me take my shoes off so couldn't have done it (this new neuro later told me this was positive and told me what it was). This doc examined me for over an hour, reviewed all records and much to my suprised came back to me and said he MS and told, me in great detail why. I protested telling him that the specialist said what he said. He s/ he has a lot of ms patients and he was sure of it anyway. I took his advice and began copaxone. After seeing him for over a year, he told me he felt like a specialist could better treat me than he could. and ref. me to the one I now see. The specialist that I see today is one that people told me repeatedly for a year, including nurses, I just had to see. So I finally went to see him, he said yes i had MS, assured me I wasn't crazy. I had lost a lot of my memory and several cognitive problems which to me seemed unusual b/c I just had RR ms and not PP and kept reading that a high % of ms patients have cognitive issues, only 5-10% have them bad enough to interfere with daily life and those are usually seen only in advanced cases. But I had a neuro/psych eval which showed no mental health issues but moderate to severe cognitive problems specific to ms. He put me on Aricept and all I can say about that is that I wish more docs knew about what a miracle drug that can be for someone with cognitive issues that need to be treated.
Let peope/docs if you can know how successful Aricept may be for ms patients. I know only a few small studies have been done to date and other docs don't seem infromed of this. I feel like I have been give a whole new brain. I was functioning like someone much older with dementia would except that at my age, no one got it.
It took me longer than I meant to but what I wanted to ask you when I read her post was do you believe this- I have concluded this after my experience and stories I've heard from a lot of others with ms, that even a lot of general neurologists don't know how to treat a patient with ms, unless it's very obvious from the start.
I also strongly believe that there is no such thing as "typical ms". My current doc said that he believes that there is no such thing as lesions "typical of ms" because it is such a variable disease, there are so many symptoms and no two cases area just alike.
It seems like it really does take a specialist. He did MRI's, uses machines that are 3 times more powerful than the commonly used ones and the one he did on me showed more and larger lesions than my other mri's and there was nothing said about "lesions not typical of ms".
I'm sorry this is so long. Most of this I probably should have written her and told her about but with you being a doc your better to tell her things like this if you feel this way also & would help her.
Would you agree with all of this? I have problems not listed in literature but have heard from others who have it that it is from ms- such as a lot of weight loss, trouble eating, bad reaction to not just heat but extreme cold, and then what a lot of others have- using a cane, balance, muscle,spasticity and eye problems. I also noticed it's hard for me to take a deep breathe, cough hard or sing & have spasticity under my ribcage & my PT s/ my diaphram muscles are very weak.
Lastly I do have one other question. My symptoms have been worsening, I seem to be having a very long relapse or either they have become permanent, I now walk with a cane and I wonder what determines when a person goes from RR to SPMS. My last MRI was in August, didn't say I had advanced ms and my next appt is in January with my doc and I know I need to discuss this with him but I want to learn what I can now about this prior to seeing him.
What are your thoughts on this? Is this typically determined by symptoms or MRI or anything else? The aricle on medhelp states lesion load isn't always correlated with disease progression & lesions don't nec determine symptoms.
. To me the fact that I've had to begin using a cane is unsettling, I knew walking was becoming more and more difficult but only when having a PT eval did I begin using the cane when the pt said it was really dangerous for me not to.I'd appreciate your input on this and sorry this is so long. I mainly set out to write out of concern for her.
Thanks
Well, I agree with everything that has been said.
Your question is one that is only rarely addressed but I found a good article on it - maybe (doubt it) I could find it again. This is the problem. The neurologists LIVE by what they can see and measure. Thus they come to believe that the MRI is the word of gospel and their exam is a perfect representation of your nervous system. In a way this is arrogance, but it is also human.
The reality is that the body of a person with MS is a constantly variable thing. What a muscle is able to do today at 10am may be more or less than it is able to do at noon. What the neurologist is able to measure at one point during a 6month interval may bear little relationship to what is really happening during a person's life. Perhaps if that doctor would follow you and repeat the exam 1) after shopping for groceries, 2) after a night of no sleep, 3) after a week of holiday preparations, they "might" begin to have a picture of the functionality of your nervous system.
Not long ago a study was done by questionaire. It basically asked how well does your neurologist's assessment of your functioning correlate with what you LIVE with. the answers added up to an overwhelming "It doesn't!" Most MS patients feel that their complaint of worsening are not heard at all. The summary of the piece was that neurologists should pay much closer attention to what the patient says and incorporate that into their treatment/diagnostic plan.
Now, on one hand, it is a fairly good thing that - after resting and waiting for your appointment and with the nervous anxiety of what is going to be found - your neuro exam approximates what was seen the visit before. In a great global view, it shows that you aren't deteriorating so much in an absolute way. As you do progress with disability you will certainly eventually show it on the exam, but may miss a year or more of opportunity to treat before it is written in the stone of the neuro's exam.
Global warming is a good analogy. We have had little pieces of evidence that the planet is warming. Did we really need to see 90% of the glaciers in Glacier National Park disappear before some people said, "Oh, the overall temp of the planet must be rising! ??
But, this is of only a little consolation when your productivity in your life's efforts is falling. The neuro is like the 5 blind men who examined an elephant. One, looking at the trunk, said,"An elephant is like a thick snake!" The next looking at the animal's leg exclaimed, "An elephant is like a tree trunk!" The third found the elephant's tail and stated that an elephant was like a smelly rope, and so on.
The neuro believes he is all-knowing having gained a little tiny, brief view of you. Like a peek through a window into a black box. Shame on him for coming to the conclusions he did. What he should have concluded is that while your neuro exam appeared unchanged, he noted from the history that your strength for walking is falling and the you need the assistance of the can more often. ....of the "cane" more often. (though probably both are true, lol.)
He did not LISTEN to you. He is not a good doctor in that sense. I was taught to ALWAYS believe the patient, until you have reason to doubt.
If your local neuro is better, then go back to him and tell him that although your exam at that moment in time seemed not to have deteriorated, he did not listen to your very specific examples of how things have gone downhill. State that you want to be on a DMD if there is no better explanation for your problems than MS.
In reality, once there are 2 or more clinical attacks and evidence of damage to the CNS in two or more places, then (if the mimics have been ruled out) the diagnosis can be made then and there. The MRI is done for additional evidence only NOT for classic evidence. If you have lesions that "can" be seen in MS, then that is sufficient for a definite MS diagnosis. The McDonald Criteria only require lesions "consistent with" MS not one that are classic for it.
He who only accepts classic evidence will have only classic patients in his practice and often seems to then decide that those are the only people with MS. It becomes a self-fulfilling belief system and is very circular thinking.
You can ask your neuro if the lesions that you have that are non-specific "could" be MS. That is, are lesions like that ever seen in MS? If the answer to that question is "yes", then you have lesions "consistent with MS" and you have fulfilled the MC.
At any point you can use what I have told you and do the whole "family friend who is a doctor with MS and who sent you an email." You might look at the graph I mentioned in the answer to schnauserlady and look at the graph that deal with the impact of 0, 1-3, or more than 4 lesions on the diagnosis of MS. Study that graph and read the discussion. You will see that the mere presence of lesions is what is needed, NOT classic lesions. Copy that lecture and tell him I sent it to you.
I wish we could get you out of this quagmire.
Oh, and I don't see any reason to see him again either. I would rather you saw someone like Dr. Hebert at NYU who isn't a lesion-counter nor does he expect that all MRIs in MS will be "classic."
Hang in there!
((((Hugs for the Holidays))))
Quix
Your question is one that is only rarely addressed but I found a good article on it - maybe (doubt it) I could find it again. This is the problem. The neurologists LIVE by what they can see and measure. Thus they come to believe that the MRI is the word of gospel and their exam is a perfect representation of your nervous system. In a way this is arrogance, but it is also human.
The reality is that the body of a person with MS is a constantly variable thing. What a muscle is able to do today at 10am may be more or less than it is able to do at noon. What the neurologist is able to measure at one point during a 6month interval may bear little relationship to what is really happening during a person's life. Perhaps if that doctor would follow you and repeat the exam 1) after shopping for groceries, 2) after a night of no sleep, 3) after a week of holiday preparations, they "might" begin to have a picture of the functionality of your nervous system.
Not long ago a study was done by questionaire. It basically asked how well does your neurologist's assessment of your functioning correlate with what you LIVE with. the answers added up to an overwhelming "It doesn't!" Most MS patients feel that their complaint of worsening are not heard at all. The summary of the piece was that neurologists should pay much closer attention to what the patient says and incorporate that into their treatment/diagnostic plan.
Now, on one hand, it is a fairly good thing that - after resting and waiting for your appointment and with the nervous anxiety of what is going to be found - your neuro exam approximates what was seen the visit before. In a great global view, it shows that you aren't deteriorating so much in an absolute way. As you do progress with disability you will certainly eventually show it on the exam, but may miss a year or more of opportunity to treat before it is written in the stone of the neuro's exam.
Global warming is a good analogy. We have had little pieces of evidence that the planet is warming. Did we really need to see 90% of the glaciers in Glacier National Park disappear before some people said, "Oh, the overall temp of the planet must be rising! ??
But, this is of only a little consolation when your productivity in your life's efforts is falling. The neuro is like the 5 blind men who examined an elephant. One, looking at the trunk, said,"An elephant is like a thick snake!" The next looking at the animal's leg exclaimed, "An elephant is like a tree trunk!" The third found the elephant's tail and stated that an elephant was like a smelly rope, and so on.
The neuro believes he is all-knowing having gained a little tiny, brief view of you. Like a peek through a window into a black box. Shame on him for coming to the conclusions he did. What he should have concluded is that while your neuro exam appeared unchanged, he noted from the history that your strength for walking is falling and the you need the assistance of the can more often. ....of the "cane" more often. (though probably both are true, lol.)
He did not LISTEN to you. He is not a good doctor in that sense. I was taught to ALWAYS believe the patient, until you have reason to doubt.
If your local neuro is better, then go back to him and tell him that although your exam at that moment in time seemed not to have deteriorated, he did not listen to your very specific examples of how things have gone downhill. State that you want to be on a DMD if there is no better explanation for your problems than MS.
In reality, once there are 2 or more clinical attacks and evidence of damage to the CNS in two or more places, then (if the mimics have been ruled out) the diagnosis can be made then and there. The MRI is done for additional evidence only NOT for classic evidence. If you have lesions that "can" be seen in MS, then that is sufficient for a definite MS diagnosis. The McDonald Criteria only require lesions "consistent with" MS not one that are classic for it.
He who only accepts classic evidence will have only classic patients in his practice and often seems to then decide that those are the only people with MS. It becomes a self-fulfilling belief system and is very circular thinking.
You can ask your neuro if the lesions that you have that are non-specific "could" be MS. That is, are lesions like that ever seen in MS? If the answer to that question is "yes", then you have lesions "consistent with MS" and you have fulfilled the MC.
At any point you can use what I have told you and do the whole "family friend who is a doctor with MS and who sent you an email." You might look at the graph I mentioned in the answer to schnauserlady and look at the graph that deal with the impact of 0, 1-3, or more than 4 lesions on the diagnosis of MS. Study that graph and read the discussion. You will see that the mere presence of lesions is what is needed, NOT classic lesions. Copy that lecture and tell him I sent it to you.
I wish we could get you out of this quagmire.
Oh, and I don't see any reason to see him again either. I would rather you saw someone like Dr. Hebert at NYU who isn't a lesion-counter nor does he expect that all MRIs in MS will be "classic."
Hang in there!
((((Hugs for the Holidays))))
Quix
Hi SB,
Your trip north sure didn't yield much from the sounds of it here. I'm was so hoping that there would be answers for you.
I have such little knowledge about mitochondrial disease I hate to venture out with guesses here. Perhaps someone else here can help - I seem to remember someone was dx'd with it last year.
My very uneducated guess is that the neuro exam would back up the new symptoms, but that is just my guess.
It doesn't sound to me like he's given you the brush-off, but rather a realistic response to you driving 4 hours each way and him not being able to provide you with answers. There's not much point in making that trip if he doesn't feel he can dx you. But I would guess that if you want to return there, they will still let you schedule appts.
I'm so sorry that you didn't get any answers again - keep looking.
as always,
Lulu
Your trip north sure didn't yield much from the sounds of it here. I'm was so hoping that there would be answers for you.
I have such little knowledge about mitochondrial disease I hate to venture out with guesses here. Perhaps someone else here can help - I seem to remember someone was dx'd with it last year.
My very uneducated guess is that the neuro exam would back up the new symptoms, but that is just my guess.
It doesn't sound to me like he's given you the brush-off, but rather a realistic response to you driving 4 hours each way and him not being able to provide you with answers. There's not much point in making that trip if he doesn't feel he can dx you. But I would guess that if you want to return there, they will still let you schedule appts.
I'm so sorry that you didn't get any answers again - keep looking.
as always,
Lulu
I am sorry the exam gave not too many answers. I don't know much about mitochondria disease.
How frustrated you must be. I really do understand that, it is a hard place to be. If your local neuro believes it is MS, cant she just start a DMD? I would ask her that question. Non-specific lesions do not mean that it is not MS. I would think your symptoms alone, should give you a diagnosis of something. You wrote that your local neuro would dx you, so at this point I would go back and let her do it.
You are getting worse, needing a cane, vision deteriorating, perhaps that is Mitochondria disease? I really have no idea about that, but sure sounds like you have something going on.
I am thinking of you and wishing you less frustration and more answers for the year 2010.
Big hugs,
Michelle
How frustrated you must be. I really do understand that, it is a hard place to be. If your local neuro believes it is MS, cant she just start a DMD? I would ask her that question. Non-specific lesions do not mean that it is not MS. I would think your symptoms alone, should give you a diagnosis of something. You wrote that your local neuro would dx you, so at this point I would go back and let her do it.
You are getting worse, needing a cane, vision deteriorating, perhaps that is Mitochondria disease? I really have no idea about that, but sure sounds like you have something going on.
I am thinking of you and wishing you less frustration and more answers for the year 2010.
Big hugs,
Michelle
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