Aa
And the verdict is...
I'm sure you'd never guess....Migraine. I argued with the Neurologist. Told him my headaches are under control. He babbled on about "the rainbow" of migraine....I think I give. Pastor Dan ----HELP! They did an immediate MRI to check for aneurism and stroke, which was clear.
I am going to do some research on silent migraine and probably prod the guy to either help me figure this out or point me to someone who can when the headache stuff he is giving me doesn't work.
So do I say the words MS or Parkinson's? My hubby has talked me into at least asking for a sleep study, which I will.
I hate this journey!
Heather
I am going to do some research on silent migraine and probably prod the guy to either help me figure this out or point me to someone who can when the headache stuff he is giving me doesn't work.
So do I say the words MS or Parkinson's? My hubby has talked me into at least asking for a sleep study, which I will.
I hate this journey!
Heather
Certainly no offense taken as we are all different, as are our symptoms.
For me, the symptoms have gotten worse and more so. I think this neurologist may end up either being the one that I can talk with or who can refer me to someone/ get imput from colleagues as he is with the U. Very nice, though a little hard to understand the Peurto Rican accent sometimes. As I said in the Migraine/MS thread started today I am waiting for the report to come so that I can ask some more questions based on what he has in his report.
As for seeking a second opinion, this is my third - I don't really count the second though as he told me to simply "suck it up." The first - at the Mayo clinic suspected MS but found nothing on the MRI, which was only done of the brain over two years ago. Since then my symptoms are totally different. I was there, in the first place, simply for chronic daily headache, which has since resolved and was never diagnosed as Migraine. I had a four month break between the symptom changes and they have gotten progressively worse and more numerous over the past year. This is why the headache diagnosis ticks me off. I can accept silent Migraine, but I don't think that that is the only thing that is happening to me, and that's what I argue.
For me, the symptoms have gotten worse and more so. I think this neurologist may end up either being the one that I can talk with or who can refer me to someone/ get imput from colleagues as he is with the U. Very nice, though a little hard to understand the Peurto Rican accent sometimes. As I said in the Migraine/MS thread started today I am waiting for the report to come so that I can ask some more questions based on what he has in his report.
As for seeking a second opinion, this is my third - I don't really count the second though as he told me to simply "suck it up." The first - at the Mayo clinic suspected MS but found nothing on the MRI, which was only done of the brain over two years ago. Since then my symptoms are totally different. I was there, in the first place, simply for chronic daily headache, which has since resolved and was never diagnosed as Migraine. I had a four month break between the symptom changes and they have gotten progressively worse and more numerous over the past year. This is why the headache diagnosis ticks me off. I can accept silent Migraine, but I don't think that that is the only thing that is happening to me, and that's what I argue.
I think one thing that Udkas brought up to differentiate migraine and MS was interesting: "if the sx aren't getting worse." That's where I ended up after my first bought of sx 7 years ago. After a few clean MRIs and 3 neuro's opinions, I was told "complicated migraine" and "idiopathic parasthesia." To have something to tell people I went with the migraine dx. I figured, I wasn't getting worse, so I could just live with it for the time being. Also, my only abnormality on exam was hyper-reflexia in my left leg and clonus in my left ankle.
There were some other sx along the way, but nothing severe. This past winter I wound up with trigeminal neuralgia (started on the left but eventually became bilateral), severe headache (occipital neuralgia? only responded to gabapentin, not traditional migraine meds) that led me back to the neuro. My exam was pronouncedly different this time, with a number of abnormalities indicating spinal and brainstem involvement. So far, MRIs are still clear. (But I'm going to schedule the 3T soon.)
So what to do now? I can accept migraine as the answer if I'm not getting worse, but what I have is clinically indistinguishable from MS (according to my MS specialist), and it's clearly getting worse. Maybe the answer is just, "we don't know." I may have to accept that. We'll see.
Stephanie
There were some other sx along the way, but nothing severe. This past winter I wound up with trigeminal neuralgia (started on the left but eventually became bilateral), severe headache (occipital neuralgia? only responded to gabapentin, not traditional migraine meds) that led me back to the neuro. My exam was pronouncedly different this time, with a number of abnormalities indicating spinal and brainstem involvement. So far, MRIs are still clear. (But I'm going to schedule the 3T soon.)
So what to do now? I can accept migraine as the answer if I'm not getting worse, but what I have is clinically indistinguishable from MS (according to my MS specialist), and it's clearly getting worse. Maybe the answer is just, "we don't know." I may have to accept that. We'll see.
Stephanie
I am not saying that the symptoms that you are experiencing are migraine. I hope I have not offended anyone here, I am not implying at all that it is migraine, I think only a Dr could really make that decision after a full history and exam and MRI etc. etc. I do agree migraine could be the simple diagnosis but migraine can mimic MS.
I know many people are told that their symptoms are migraine and later down the track they discover it is indeed MS.
I would suggest anyone who doubts their diagnosis to get a second opinion from a good neurologist, one who's specials in MS or degenerative diseases of the nervous system and if you have a migraine specialist seek them out too.
Good luck with it all, I just wanted people to understand that migraines can and do cause some pretty amazing symptoms so shouldn't be discounted out completely.
Cheers,
udkas
I know many people are told that their symptoms are migraine and later down the track they discover it is indeed MS.
I would suggest anyone who doubts their diagnosis to get a second opinion from a good neurologist, one who's specials in MS or degenerative diseases of the nervous system and if you have a migraine specialist seek them out too.
Good luck with it all, I just wanted people to understand that migraines can and do cause some pretty amazing symptoms so shouldn't be discounted out completely.
Cheers,
udkas
Hi Pastor Dan,
I guess you have to trust your neurologist, they are the experts in this field, I trust my neurologist, but if you don't trust your neurologist get a second opinion.
For myself it is easier to reach the conclusion that my neurologist is correct because I have been dealing with symptoms for a long time without any real progression. This in itself would say that it's not MS.
This is my idea of why I think my neurologist has reached the conclusion that he has for my own symptoms. I hope this might help you.
I have abnormal reflexes that would indicate spinal involvement, not brain. I have clonus, hyperreflexia, babinskis, can't stand with eyes shut, or do the tandem walk, nose to his finger test, clear sensory line below the thoracic. My arms are affected as well, but left side is worse. My neurologist says T10, cervical and maybe even brainstem. He believes I have had more than one attack of TM. Spinal cord lesions are not as easy to detect on MRI. If I had MS it would have or should have shown up by now as I have been dealing with this for years. LP was normal, NCS were normal.
I tend to agree that I did have maybe an isolated case of demylination (when this originally happened my first neuro thought it was MS) but took that diagnosis away when it didn't progress.
So i have stuff to indicate spinal cord problems but I don't have faulty discs etc. that would be obvious and also if my attack was years ago the lesions may have healed and MRI was not so great years and years ago. Most of my symptoms are just left over stuff from the original attack of TM.
Also my history of how my attack started etc. fits TM but it could fit MS too.
My migraines could well be a product of my lesions, caused by my lesions and migraines are like having the flu etc. they could be worsening my TM symptoms.. confsuing! You betcha. My neuro thinks this is the case for me, two problems that overlap each other..
They way my neuro explained it to me was that most TM/MS type things usually are there constantly, like if you get some tingling in your hand it is likely to last for days when you are having the attack and then gradually get better but not come and go throughout the days. My migraine symptoms can happen daily but they tend to come and go through out the day. Like I might have pins and needles for the morning in my hand and then burning in leg for the afternoon... I am sure this is migraine. Can you go to a migraine specialist and see what they have to say?
Do you have an abnormal neurological exam that might exclude it being from migraine as migraine will cause balance issues like vertigo too.
I plan to ask my neuro more again at my next visit about migraine as well because I get confused if it is my TM getting worse or if it is just migraine. If somebody had told me even 2 years ago that all this could be from migraine I would have laughed at them. I am saying just keep your options open.
My neurologist is still monitoring me as TM can turn into MS, even if it does turn out to be MS at the moment I don't meet any criteria for the DMD and well if my circumstances change I will get them as he is still doing repeat MRI etc. and watching that I am not getting worse, but he believes my TM has reoccured in the time he has been seeing me.
For me I am happy with my diagnosis, it makes sense, it may change but at the moment my brain MRI is unremarkable and my clinical exam shows spinal cord issues, I do concede I get migraines but yep sometimes I am uncertain if my migraines are the source of all my symptoms and most likely they are not! I am sure they have nothing to do with my bladder issues but I do get migraines without the headache. Migraine is not actually a headache....
I think if you are progressively getting worse then it would not be migraine, most of my stuff is sensory but my weakness has stayed the same over the last year, but I do have weakness from the TM. I must admit some of sx are migraine some are TM.
My neuro is confident and happy to give me a diagnosis without MRI proof, he has stated where the lesions are and is definate about them being there, so I don't think he fears too much about being wrong!
I think for WadeHeather I would get a second opinion, Doctors are not God, they can get it wrong and like people there are good ones and not so good ones, I trust mine, his communication skills are brilliant but I know he is also highly , highly trained but I am sure he can make mistakes too. I remain open minded but I do get migraines and I do have TM and maybe I will eventually have MS, but I dont think so, but yep I think my TM has reoccured.
Sorry this is a rambling post, I hope it made sense and was not too long, opps well I know it was too long.
I always ramble. Well hospital for me tomorrow to sort out my other problems.
Cheers,
Udkas.
I guess you have to trust your neurologist, they are the experts in this field, I trust my neurologist, but if you don't trust your neurologist get a second opinion.
For myself it is easier to reach the conclusion that my neurologist is correct because I have been dealing with symptoms for a long time without any real progression. This in itself would say that it's not MS.
This is my idea of why I think my neurologist has reached the conclusion that he has for my own symptoms. I hope this might help you.
I have abnormal reflexes that would indicate spinal involvement, not brain. I have clonus, hyperreflexia, babinskis, can't stand with eyes shut, or do the tandem walk, nose to his finger test, clear sensory line below the thoracic. My arms are affected as well, but left side is worse. My neurologist says T10, cervical and maybe even brainstem. He believes I have had more than one attack of TM. Spinal cord lesions are not as easy to detect on MRI. If I had MS it would have or should have shown up by now as I have been dealing with this for years. LP was normal, NCS were normal.
I tend to agree that I did have maybe an isolated case of demylination (when this originally happened my first neuro thought it was MS) but took that diagnosis away when it didn't progress.
So i have stuff to indicate spinal cord problems but I don't have faulty discs etc. that would be obvious and also if my attack was years ago the lesions may have healed and MRI was not so great years and years ago. Most of my symptoms are just left over stuff from the original attack of TM.
Also my history of how my attack started etc. fits TM but it could fit MS too.
My migraines could well be a product of my lesions, caused by my lesions and migraines are like having the flu etc. they could be worsening my TM symptoms.. confsuing! You betcha. My neuro thinks this is the case for me, two problems that overlap each other..
They way my neuro explained it to me was that most TM/MS type things usually are there constantly, like if you get some tingling in your hand it is likely to last for days when you are having the attack and then gradually get better but not come and go throughout the days. My migraine symptoms can happen daily but they tend to come and go through out the day. Like I might have pins and needles for the morning in my hand and then burning in leg for the afternoon... I am sure this is migraine. Can you go to a migraine specialist and see what they have to say?
Do you have an abnormal neurological exam that might exclude it being from migraine as migraine will cause balance issues like vertigo too.
I plan to ask my neuro more again at my next visit about migraine as well because I get confused if it is my TM getting worse or if it is just migraine. If somebody had told me even 2 years ago that all this could be from migraine I would have laughed at them. I am saying just keep your options open.
My neurologist is still monitoring me as TM can turn into MS, even if it does turn out to be MS at the moment I don't meet any criteria for the DMD and well if my circumstances change I will get them as he is still doing repeat MRI etc. and watching that I am not getting worse, but he believes my TM has reoccured in the time he has been seeing me.
For me I am happy with my diagnosis, it makes sense, it may change but at the moment my brain MRI is unremarkable and my clinical exam shows spinal cord issues, I do concede I get migraines but yep sometimes I am uncertain if my migraines are the source of all my symptoms and most likely they are not! I am sure they have nothing to do with my bladder issues but I do get migraines without the headache. Migraine is not actually a headache....
I think if you are progressively getting worse then it would not be migraine, most of my stuff is sensory but my weakness has stayed the same over the last year, but I do have weakness from the TM. I must admit some of sx are migraine some are TM.
My neuro is confident and happy to give me a diagnosis without MRI proof, he has stated where the lesions are and is definate about them being there, so I don't think he fears too much about being wrong!
I think for WadeHeather I would get a second opinion, Doctors are not God, they can get it wrong and like people there are good ones and not so good ones, I trust mine, his communication skills are brilliant but I know he is also highly , highly trained but I am sure he can make mistakes too. I remain open minded but I do get migraines and I do have TM and maybe I will eventually have MS, but I dont think so, but yep I think my TM has reoccured.
Sorry this is a rambling post, I hope it made sense and was not too long, opps well I know it was too long.
I always ramble. Well hospital for me tomorrow to sort out my other problems.
Cheers,
Udkas.
Please don't take this as me disputing your dx or your research in any way. I'm just trying to find out answers myself, mostly for myself, but obviously to help others in similar shoes, such as our good friend wadeheather here.
How do they KNOW that your sx come from migraine and/or TM and NOT from MS? What I think most of us are suspecting is that the neurology profession is defining migraine as "anything else we can't figure out, but don't want to name as part of anything else for fear of later being wrong."
In basic form, what IS the definition of migraine, how can it occur in the stomach, and how can that be shown to be migraine rather than indigestion, gastritis, or something else that we'd normally expect the stomach to suffer?
How do they KNOW that your sx come from migraine and/or TM and NOT from MS? What I think most of us are suspecting is that the neurology profession is defining migraine as "anything else we can't figure out, but don't want to name as part of anything else for fear of later being wrong."
In basic form, what IS the definition of migraine, how can it occur in the stomach, and how can that be shown to be migraine rather than indigestion, gastritis, or something else that we'd normally expect the stomach to suffer?
I am not suggesting your symptoms are from migraine as many people are fobbed of as migraine sufferers when then symptoms turn out to be MS or something else.
I suggest you get a second opinion, find a neurologist that you trust, see if you can make an extra long appointment and ask the questions about the migraines and why they go on so long etc. etc. and see what they have to say.
I get migraines and I have Transverse Myelitis and the two problems overlap causing me confusion to if I am having another attack.
I have now done a multitude of research on migraine and silent migraine etc. etc. and talked a lot with my neuro about the symptoms of migraine etc.
What you will find is migraine can cause many symptoms very close to MS and can go on for weeks on end, especially if you get daily silent migraine. You can get a migraine in your eye and even in your stomach, migraine can cause numbness, weakness. pins and needles, burning, electrical zaps etc., i get the jerk things when I have a migraine but maybe this is worsening my other problems (which the neuro said it could do), I also get a tremor during migraine too, so I don't know, I plan to ask even more questions about the migraines at my next visit with my neuro as I too still feel confused as to what is migraine or what is not.. but I also suspect that my migraines might be a product of my Transverse Myelitis.
I would get a second opinions or even 3rd opinions but after researching migraine it can be amazing what it can do.
Goodluck with it all, what you need is a neurologist that you trust, that you can ask openly questions too, ie: why the migraine diagnosis over MS etc. someone who just doesn't say it's migraines without explaining the symptoms more to you.
Best wishes with it all. Please don't take it that I am saying you do have migraines, I am just saying do look at the options.
Cheers,
Udkas.
I suggest you get a second opinion, find a neurologist that you trust, see if you can make an extra long appointment and ask the questions about the migraines and why they go on so long etc. etc. and see what they have to say.
I get migraines and I have Transverse Myelitis and the two problems overlap causing me confusion to if I am having another attack.
I have now done a multitude of research on migraine and silent migraine etc. etc. and talked a lot with my neuro about the symptoms of migraine etc.
What you will find is migraine can cause many symptoms very close to MS and can go on for weeks on end, especially if you get daily silent migraine. You can get a migraine in your eye and even in your stomach, migraine can cause numbness, weakness. pins and needles, burning, electrical zaps etc., i get the jerk things when I have a migraine but maybe this is worsening my other problems (which the neuro said it could do), I also get a tremor during migraine too, so I don't know, I plan to ask even more questions about the migraines at my next visit with my neuro as I too still feel confused as to what is migraine or what is not.. but I also suspect that my migraines might be a product of my Transverse Myelitis.
I would get a second opinions or even 3rd opinions but after researching migraine it can be amazing what it can do.
Goodluck with it all, what you need is a neurologist that you trust, that you can ask openly questions too, ie: why the migraine diagnosis over MS etc. someone who just doesn't say it's migraines without explaining the symptoms more to you.
Best wishes with it all. Please don't take it that I am saying you do have migraines, I am just saying do look at the options.
Cheers,
Udkas.
EMG and NCS are usually done together.
EMG puts a little current into muscles and sees how they flex. Like if they're as strong or as fast at reacting to the current as they're supposed to be. Electromyogrphy.
NCS is a nerve conduction study. They apply a little current somewhere on an arm or leg and see how fast it travels from point A to point B.
These are tests of your peripheral nervous system and your muscles. You barely feel it, but it might make a muscle a bit stiff afterwards for a while.
EMG puts a little current into muscles and sees how they flex. Like if they're as strong or as fast at reacting to the current as they're supposed to be. Electromyogrphy.
NCS is a nerve conduction study. They apply a little current somewhere on an arm or leg and see how fast it travels from point A to point B.
These are tests of your peripheral nervous system and your muscles. You barely feel it, but it might make a muscle a bit stiff afterwards for a while.
I'm thinking that our neuros must have all flunked out of the same medical school.
Heather, have you had an EMG/NCS? If so, what were the results? It would seem that for someone with what you're describing, that would be clearly indicated.
Bio
Bio
That's exactly what they are trying to say! Thanks for confirming my thoughts...
Hi,
I would seek a second opinion on this matter. The very first neuro I went to said that my lesions were from migraines and all my symptoms were from this. Do I believe this? No! I hadn't suffered with a migraine for over 10+ years. Frankly, I believe he didn't know what was wrong with me and didn't want to say that, so he left me with that DX. So I went for a second opinion.
It is true (from what I read) that migraines can cause neurological symptoms that can last for a day or so. These symptoms would NOT last for weeks to months, like Stephanie pointed out. If you are on migraine medication, and if this was your problem, then your symptoms would be gone. Plus if you were really suffering from migraines your symptoms would only be temporary, not ongoing. Your neurological function will return completely to normal after a migraine episode.
Are they trying to say that you live with a migraine 24/7 that you can't feel? That seems impossible to me.
Hang In There
I would seek a second opinion on this matter. The very first neuro I went to said that my lesions were from migraines and all my symptoms were from this. Do I believe this? No! I hadn't suffered with a migraine for over 10+ years. Frankly, I believe he didn't know what was wrong with me and didn't want to say that, so he left me with that DX. So I went for a second opinion.
It is true (from what I read) that migraines can cause neurological symptoms that can last for a day or so. These symptoms would NOT last for weeks to months, like Stephanie pointed out. If you are on migraine medication, and if this was your problem, then your symptoms would be gone. Plus if you were really suffering from migraines your symptoms would only be temporary, not ongoing. Your neurological function will return completely to normal after a migraine episode.
Are they trying to say that you live with a migraine 24/7 that you can't feel? That seems impossible to me.
Hang In There
Thanks for the note. I am not currently going to Mayo because it is "out of network." When I was fighting the chronic headaches I did see a neuro there (and paid dearly for it) who suspected MS, but my MRI did not show any lesions, which lead me to a dx of chronic daily headaches. They did not MRI my spine.
From what I've been reading (and trying to find proof against) about silent migraine it does cause a lot of symptoms similar to MS and other things, such as the tingling and blurred vision/blind spots, facial and eye pain, memory issues. But it doesn't say anything about tremors, twitching, violent sleep or insomnia.
I'm kind of afraid to ask for anything any more. Not sure why I should care if anyone thinks I'm crazy or not, but I do. Or maybe I'm just afraid of what I think?
From what I've been reading (and trying to find proof against) about silent migraine it does cause a lot of symptoms similar to MS and other things, such as the tingling and blurred vision/blind spots, facial and eye pain, memory issues. But it doesn't say anything about tremors, twitching, violent sleep or insomnia.
I'm kind of afraid to ask for anything any more. Not sure why I should care if anyone thinks I'm crazy or not, but I do. Or maybe I'm just afraid of what I think?
I get migraine, but I have something else going on too. What I don't understand is why some Dr's don't seem to get this. At least mine seemed to accept that. He asked me if I ever had "a severe one sided headache" and I said, oh migraine? I've had those since I was a teen. It sort of took it off the table for the other stuff I'm dealing with for the last few years.
Hi Heather,
I don't remember - are you being seen by an MS neurologist or just a general neuro? I know you are in MN, are you going to the MAYO clinic?
If I were in your situation and had the insurance to do so, I would be looking for a second opinion. That isreasonable and no doctor should object to you asking for confirmation of a dx.
Migraine keeps popping up here as a dx and I really have to go back and read more about why the confusion between the two. I realize Migraines can happen in other places in your body, and not just as headaches. But beyond that, I am pretty clueless.
Hang in there and don't give up until you get an answer you are satisfied with. As for mentioning other diseases, I would think at this point you have nothing to lose by asking if it could maybe be MS and why not.
good luck,
Lulu
I don't remember - are you being seen by an MS neurologist or just a general neuro? I know you are in MN, are you going to the MAYO clinic?
If I were in your situation and had the insurance to do so, I would be looking for a second opinion. That isreasonable and no doctor should object to you asking for confirmation of a dx.
Migraine keeps popping up here as a dx and I really have to go back and read more about why the confusion between the two. I realize Migraines can happen in other places in your body, and not just as headaches. But beyond that, I am pretty clueless.
Hang in there and don't give up until you get an answer you are satisfied with. As for mentioning other diseases, I would think at this point you have nothing to lose by asking if it could maybe be MS and why not.
good luck,
Lulu
What I desperately want is for some group of neuros to get together and clearly outline the differences between migraine and MS. What I hear and read is that migraine sx last a few hours (less than 24) and MS sx are longer than 24 hours. If that's the case, then how come people with sx lasting *months* are being given dx's of migraine?
I feel your frustration and sympathize 100%. The gist of the migraine dx seems to be, don't worry about it, you aren't/ won't get worse. If this were the case, fine, but when people with migraine are getting progressively worse neuro sx, then what? When does it turn into something they can't just ignore?
I wish I had an answer--I honestly want someone to do some research into this. If there's a large group of people out there who truly have migraine that's causing these wretched sx, then why doesn't anyone care to study treatments? Until they do this, and explain the actual differences between migraine and other progressive neuro diseases, then I can't help but feel migraine is the catch all dx.
Sorry, Heather. All I can think is to get a second opinion, if you don't feel like the dx fits.
(Although I'm still undx, my current MS specialist has told me she thinks my headaches are part of the sx I'm experiencing, rather than causing the sx--she said many of her MS pt's get headaches and migraines.)
Stephanie
I feel your frustration and sympathize 100%. The gist of the migraine dx seems to be, don't worry about it, you aren't/ won't get worse. If this were the case, fine, but when people with migraine are getting progressively worse neuro sx, then what? When does it turn into something they can't just ignore?
I wish I had an answer--I honestly want someone to do some research into this. If there's a large group of people out there who truly have migraine that's causing these wretched sx, then why doesn't anyone care to study treatments? Until they do this, and explain the actual differences between migraine and other progressive neuro diseases, then I can't help but feel migraine is the catch all dx.
Sorry, Heather. All I can think is to get a second opinion, if you don't feel like the dx fits.
(Although I'm still undx, my current MS specialist has told me she thinks my headaches are part of the sx I'm experiencing, rather than causing the sx--she said many of her MS pt's get headaches and migraines.)
Stephanie
Heather, I'm sorry. Don't give. Just take a break, do what he's said to do just to rule his whacky ideas out, and then move on. I'm glad you're doing the sleep study. Do migraines really cause tremors, lasting tremors? Doesn't make sense to me.
Bio
Bio
I'm with you sister!! After my visit at theE/R the other night with excrutiating face pain they(the nurse not the Dr) said it was Bells Palsy ( I have had this for months with no pain just paralysis) or migraine. So since when do you have a migraine in your cheek, eye, ear, & jaw???I also had 18 lseions on my brain the biggest being 6mm (or cm i dont remember) & still can't get a proper dx or their attention for that matter. I started seeing a counselor to take the whole deprssion/anxiety thing off the table & it worked so I guess they're trying to blame all of this on new things now. I'll be praying for you in hope thats we will find the answers we seek. Take care & God bless!
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