Aa
do these symptoms make sense?
ok i left a post questioning the the possibility of me having ms but left no syptoms which make it difficult for you to answer. so here goes, went to er with numbness in L side of face and up to crown of head. dizziness, weakness at times, blurred vision and no sense of taste to my numb tongue either. they diagnosed me with bells palsy. went to dorctor to find out they disagree. right side of face has less movement than the L. they set me up for a mri to check for brain lesions which i have cuz ive been tested for ms twice before becaus i have cronic bouts with cluster migraines.do "any " of these symptoms sound like ms. and can anyone explain if it is possible to go to the doctor 3 times in 10 to 15 years with migraines and the symptoms above and everytime they are thinkin ms. but i can go 5 yrs or so with nothing. does that make sense? and can they not just diagnose ms with one fullproof test? thank u so much for any imput.
well let me start by saying you guys have all of this knowledge I am embarrassed to say ive been wandering thru the internet dumbfounded till i found u guys . so thanks again! Well i told u that i go for an mri tomorrow, however we have 1 neurologist in this town and I wont be seeing him till December. These symptoms do not seem to be going anywhere, however the places that you've told me about Quix are not even close to where I live. notta one. So i guess i wait. (however, i do thank u for tryin). Again, I appreciate any advice you can give and I do apologize for seeming rather self centered about this. I take it that you both have had ms for sometime if u have all of this knowledge and I should be a bit more understanding to that fact. Please know that i was just very lost when I entered this website. I will be keeping you people in my thoughts daily. Thanks so much and take care!
First she needs to go to her doctor and see what they say after a full work up. If he can't find anything then ask for a referral to a neurologist. That would be the way I would start.
You might want to post this as a separate question and not on this thread. I think you would get a bigger response from others who know a whole lot more than I do. Hang in there and things will be okay. Even if she has MS it's not a death sentence it's just a tough journey.
I'll be praying,
Carol
Any way welcome, we are glad that your here. I think you'll find this group of people very caring and loving. It's like one big family.
You might want to post this as a separate question and not on this thread. I think you would get a bigger response from others who know a whole lot more than I do. Hang in there and things will be okay. Even if she has MS it's not a death sentence it's just a tough journey.
I'll be praying,
Carol
Any way welcome, we are glad that your here. I think you'll find this group of people very caring and loving. It's like one big family.
One of the "hallmark" signs of MS is the occurrence of "bilateral" TN. This should always prompt a search for MS. I have cites. Interesting, eh? Bilateral occurence is more common in the people with underlying MS, than in people without.
Approximately 2% of MSer's will develop TN. Approximately 5% of people with TN will have MS.
Quix
Approximately 2% of MSer's will develop TN. Approximately 5% of people with TN will have MS.
Quix
It's interesting that Quix mentioned Trigeminal Neuralgia. A little over three years ago I had a series of very painful spasms on the side of my head just above the ear, maybe an 1" or so above it. The pain was sudden, extreme and I thought I was gonna die. My PCP sent me for Cat scans and MRIs and thats how they found lesions, they were looking for signs of a stroke or aneurysm. It happened over a few days off and on and mostly happened on the left side of my head. A couple of days later it happened on the right side in the same location.
Nothing was ever found. I have since learned that there are several causes of it and it is an MS symptom, though seen less than most others. There are treatment from medication to surgery. I have had it happen a couple of times in the 3 years since then and it is like getting cold sore. You know a day or so before that it's going to happen. The area starts to feel funny and you just start praying it won't act up.
One medical page that had some good info on it said that it is sometimes refered to as the "sucicide disease". Wikipedia has a pretty good write-up and heres the link.
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
If you've ever experienced this you would think thats a pretty accurate description of the pain.
Johnny
Nothing was ever found. I have since learned that there are several causes of it and it is an MS symptom, though seen less than most others. There are treatment from medication to surgery. I have had it happen a couple of times in the 3 years since then and it is like getting cold sore. You know a day or so before that it's going to happen. The area starts to feel funny and you just start praying it won't act up.
One medical page that had some good info on it said that it is sometimes refered to as the "sucicide disease". Wikipedia has a pretty good write-up and heres the link.
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
If you've ever experienced this you would think thats a pretty accurate description of the pain.
Johnny
THE IMPORTANCE OF SEEING AN MS SPECIALIST
Neurology is a huge field with hundreds of different diseases, each with their own variations. A general neurologist has to keep up on all the research on all these things. Thus, they have to know a little about thousands of topics. A true MS specialist deals just with MS, either after it is diagnosed or they may also be involved in guiding the work up to diagnose it or rule it out. They understand it's variability and that it can present in weird ways. They know that sometimes it takes persistence to nail the diagnosis. They also know the importance of early treatment with Disease Modifying Drugs.
Now, any neurologist that wants to see MS patients can "call" themselves an MS specialist. The National MS Society local chapters keep a list of MS specialists, and this is usually the first place to check. The problem is that the doctors, themselves, volunteer that they are specialists. My first, evil neurologist was on the NMSS list and he made several bad decisions which delayed my diagnosis for years.
Another way to find a specialist is to attend an MS Support Group meeting. People will be very willing to recommend the doctors that are skilled, compassionate and knowledgeable, along with who to avoid. You can find meeting times and places for local support groups on the website of your local MS Society Chapter.
Recently I have been recommending that people seek out a neurologist affiliated with the (International) Consortium of Multiple Sclerosis Centers. This is an international group that was formed to consolidate all of the vast amount of research and experience and to develop recommendations and protocols for the diagnosis and treatment of MS. These people are up-to-date! My neuro heads an MS Clinic in the closest city to me, though he is about 40 miles away. The trip is well-worth it. He is associated also with specialized PT and a Uro-Gynecology Continence Clinic with 2 female super-specialists. He does a ton of research. Here is the link for finding a Clinic that is a member of CMSC:
http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528
The CMSC is also offers a voluntary "Certification Exam" to make sure that neuro's can show that they truly know what they are talking about. If you have read much on this forum you know that too many of us have run into neurologists who were dismally ignorant, dodo's, dweebs, dismissive, disdainful, dumb, dense and otherwise generally defective. It would be great to have such a certification to know that our neuro was at least knowledgeable. The exam won't give them a better bedside manner, though. They may still have a personality like a saucer of cold pee. Here is the link about the exam and the names of physician's who are certified:
http://www.mscare.org/cmsc/MSCS.html
So, I would recommend that anyone facing MS or it's diagnosis seek out the best-trained and best doctor in the field they can arrange to see. It is that important. This isn't one of those diseases where you can "read up" on a few articles and "wing it" with the patient.
Quix
Neurology is a huge field with hundreds of different diseases, each with their own variations. A general neurologist has to keep up on all the research on all these things. Thus, they have to know a little about thousands of topics. A true MS specialist deals just with MS, either after it is diagnosed or they may also be involved in guiding the work up to diagnose it or rule it out. They understand it's variability and that it can present in weird ways. They know that sometimes it takes persistence to nail the diagnosis. They also know the importance of early treatment with Disease Modifying Drugs.
Now, any neurologist that wants to see MS patients can "call" themselves an MS specialist. The National MS Society local chapters keep a list of MS specialists, and this is usually the first place to check. The problem is that the doctors, themselves, volunteer that they are specialists. My first, evil neurologist was on the NMSS list and he made several bad decisions which delayed my diagnosis for years.
Another way to find a specialist is to attend an MS Support Group meeting. People will be very willing to recommend the doctors that are skilled, compassionate and knowledgeable, along with who to avoid. You can find meeting times and places for local support groups on the website of your local MS Society Chapter.
Recently I have been recommending that people seek out a neurologist affiliated with the (International) Consortium of Multiple Sclerosis Centers. This is an international group that was formed to consolidate all of the vast amount of research and experience and to develop recommendations and protocols for the diagnosis and treatment of MS. These people are up-to-date! My neuro heads an MS Clinic in the closest city to me, though he is about 40 miles away. The trip is well-worth it. He is associated also with specialized PT and a Uro-Gynecology Continence Clinic with 2 female super-specialists. He does a ton of research. Here is the link for finding a Clinic that is a member of CMSC:
http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528
The CMSC is also offers a voluntary "Certification Exam" to make sure that neuro's can show that they truly know what they are talking about. If you have read much on this forum you know that too many of us have run into neurologists who were dismally ignorant, dodo's, dweebs, dismissive, disdainful, dumb, dense and otherwise generally defective. It would be great to have such a certification to know that our neuro was at least knowledgeable. The exam won't give them a better bedside manner, though. They may still have a personality like a saucer of cold pee. Here is the link about the exam and the names of physician's who are certified:
http://www.mscare.org/cmsc/MSCS.html
So, I would recommend that anyone facing MS or it's diagnosis seek out the best-trained and best doctor in the field they can arrange to see. It is that important. This isn't one of those diseases where you can "read up" on a few articles and "wing it" with the patient.
Quix
Quix thanks for the article. I find all this research quite interesting. I am very grateful for your wealth of knowledge and ability to point us in helpful directions.
I went to have another ENG last week and was at the follow-up appt with the ENT. He was quite a character and very informative as well. He mentioned that he was just at a conference on Migraine headaches and indicated that he learned that about 5% of Migraine suffers have no headache pain at all. He did not say that was what could be wrong with me but indicated it as a possibility and encouraged me to talk with neuro about it.
tln, I am sorry that your MIL is sick. I hope you can get some answers, perhaps going to a neurologist who may be able to do some blood work and other tests will be helpful. My prayers are with you and your MIL.
Thanks again Quix.
Nancy
I went to have another ENG last week and was at the follow-up appt with the ENT. He was quite a character and very informative as well. He mentioned that he was just at a conference on Migraine headaches and indicated that he learned that about 5% of Migraine suffers have no headache pain at all. He did not say that was what could be wrong with me but indicated it as a possibility and encouraged me to talk with neuro about it.
tln, I am sorry that your MIL is sick. I hope you can get some answers, perhaps going to a neurologist who may be able to do some blood work and other tests will be helpful. My prayers are with you and your MIL.
Thanks again Quix.
Nancy
My mother-in-law is very sick, and no one seems to have an answer. I have been reading about ms and think that she might have some of the symptoms. At first she thought she might have a staph infection. She it tired alot, her arms twitch, her head moves around, and every time she goes to the emergency room they send her home. If anyone could give some advice on this, I would greatly appreciate it.,
Cluster headache-like pain in multiple sclerosis
Leandri M, Cruccu G, Gottlieb A
Cephalalgia Oct 1999, 19(8):732-734
We describe a case with simultaneous occurrence of cluster headache-like pain and multiple sclerosis. Both neuroimaging and neurophysiology (trigeminal evoked potentials) revealed a demyelination plaque in the pons, at the trigeminal root entry zone, on the side of pain. Although that type of lesion is usually associated with trigeminal neuralgia pain, we hypothesize that in this case it may be linked with the concomitant cluster headache, possibly by activation of trigemino-vascular mechanisms.
This was the one
Quix
Leandri M, Cruccu G, Gottlieb A
Cephalalgia Oct 1999, 19(8):732-734
We describe a case with simultaneous occurrence of cluster headache-like pain and multiple sclerosis. Both neuroimaging and neurophysiology (trigeminal evoked potentials) revealed a demyelination plaque in the pons, at the trigeminal root entry zone, on the side of pain. Although that type of lesion is usually associated with trigeminal neuralgia pain, we hypothesize that in this case it may be linked with the concomitant cluster headache, possibly by activation of trigemino-vascular mechanisms.
This was the one
Quix
Thank u so much for your in depth reply. It was more helpfull than i could ever have expected. Thanks again. I am scheduled this Thursday for another MRI. Then i am not quite sure where we go from there. I have never been tested (to my knowledge) for ON. However Iwas admitted to our local hospital about 8 years ago to have a series of tests ran. That was when I had my spinal tap. It must have been ok. The neurologist didnt say much other than my 1st mri machine may not have been as strong as the 2nd. And he felt that my doctor may keep an eye on it if I had any more problems. I do believe if i recollect that i had 5 markings on my 1st mri and 7 on my 2nd. Other than that i am rather clueless. Just so i do not mislead u, i get the migraines usually a few years apart. Last bout being when i was 32 i think. Now i am 38 and this last problem I am having, didnt involve any migraines. I was sitting at work one day and my side of my face started to go numb. after that came vision problems, difficulty swallowing, tiredness, a bit of dizziness or maybe just awkwardness and lightheadedness. So i was rather shocked when i went to doctor for a check up for bells palsy and they said no we are going to test for ms. Can i ask you, what do these ms centers do? again i do thank you very much!
I was searching the site of your second link and was wondering if you had the title of the article from http://www.medscape.com/viewarticle/431442 . I found several other interesting articles including the history of TN, however, did not find the specific article you referenced.
Thanks for info.
N
Thanks for info.
N
Johnny - Well, okay, you're off the hook 'cause of the Angel clause. Boy, did you have a narrow escape! ( but i have my eye on you....)
Kim - First off - Welcome to our growing family. We share everything here from questions to fears to indignation to some of our darkest secrets. I hope you find a group that speads "good ripples" through your life.
Numbness or any paresthesias of the face are very common early symptoms in MS. So are pain, spasms and twitches in the face. Loss of taste is described, but is not one of the common problems. All of these things vision, smell, eye movements (double vision), facial expression, face sensation, taste and tongue movements, and sensation in the ear and throat, and some muscles of swallowing and in the neck and shoulders, are governed by the 12 cranial nerves. These come directly off the brainstem.
The one-sided numbness of the face would be from a problem with the Trigeminal Nerve (5th). When the problem is excruciating pain it is called Trigeminal Neuralgia. Vision difficulties, if they were more than brief, may have indicated an inflammation of the (2nd) Optic Nerve called Optic Neuritis. Have you ever been tested for ON with a test called a "Visual Evoked Potential?" I also disagree with the disgnosis of Bell's Palsy. A "palsy" means a weakness and it indicates a weakness of the facial nerve (7th) that control the muscles of facial expression. So when you had a weakness of the R side, you also had a numbness of the left side...is this correct? Problems with multiple cranial nerves does, indeed, sound like MS so I see why they thought of it. Another possibility for this combination of symptoms is Lyme Disease, except that the numbness of the tongue would be more unusual in Lyme.
Cluster migraines are a horrible thing to go through. You have my sympathies. When I looked up the combination of cluster headaches and MS, they have been described together. It doesn't sound like it is very common, but quite possible. The first link below is on the higher incidence of headaches of all kinds in MS.
Nancy and Kim both - I found a couple articles describing MS and Trigeminal Neuralgia which was misdiagnosed as cluster headaches. Good job, Nanners!! I love it when things sort of come together as we get more information. The second link discusses this about the 6th article down.
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1468-2982.1999.019008732.x?journalCode=cha
http://www.medscape.com/viewarticle/431442
Kim - Your story of repeated suspicions for MS along with repeated MRIs with lesions is very interesting. Yes, migraine disease does cause small "punctate" lesions and they could accrue over time. But, the types of numbness and weakness you have is really suggestive of MS. And the history of attacks separated by years of normalcy is also quite characteristic of Relapsing (attacks) Remitting (resolution) MS.
People with MS are not sicker than the general population. It is a myth that they have more illneses. Do you recall, though, if any of your bouts of "cluster headaches" followed a cold or an infection?
Do you have any of the other common symptoms of MS? During the bouts of headaches, any severe fatigue. Do you have problems with getting overheated? Does heat ever bring on a headache?
From what you have told us, I understand why the interest by your Drs in MS, but it is not clear what exactly you're going through. I am not an expert in headache, by any measure. The concern, though, is - If this is MS, even though you are practically without symptoms almost all of the time, you are at risk of increasing brain lesions and a "subacute" development of disability (the disability is developing but is not yet symptomatic). When it appears, it can do so with a real nastiness and irreversable loss of function. In my mind the issue needs to be settled so 1) if it isn't MS you don't need to feel hounded by the spector of it, and 2) if it is MS you can take active steps to slow the brain's accumulation of lesions.
We all wish there was one foolproof test for MS. There is not. It can be an art to diagnose. What are your thoughts about going to a major MS center and getting all of this sorted out. The testing is better than it was 7 years ago. You should have a repeat MRI of the brain and spine with and without contrast. (If there are lesions on the spine it would point strongly toward MS, as migraines do not cause lesions there). You need at least a Visual Evoked Potential and probably another spinal tap if the MRIs don't tell the whole story.
Is this what you were asking? If not, fire away and I'll try again. Quix
Kim - First off - Welcome to our growing family. We share everything here from questions to fears to indignation to some of our darkest secrets. I hope you find a group that speads "good ripples" through your life.
Numbness or any paresthesias of the face are very common early symptoms in MS. So are pain, spasms and twitches in the face. Loss of taste is described, but is not one of the common problems. All of these things vision, smell, eye movements (double vision), facial expression, face sensation, taste and tongue movements, and sensation in the ear and throat, and some muscles of swallowing and in the neck and shoulders, are governed by the 12 cranial nerves. These come directly off the brainstem.
The one-sided numbness of the face would be from a problem with the Trigeminal Nerve (5th). When the problem is excruciating pain it is called Trigeminal Neuralgia. Vision difficulties, if they were more than brief, may have indicated an inflammation of the (2nd) Optic Nerve called Optic Neuritis. Have you ever been tested for ON with a test called a "Visual Evoked Potential?" I also disagree with the disgnosis of Bell's Palsy. A "palsy" means a weakness and it indicates a weakness of the facial nerve (7th) that control the muscles of facial expression. So when you had a weakness of the R side, you also had a numbness of the left side...is this correct? Problems with multiple cranial nerves does, indeed, sound like MS so I see why they thought of it. Another possibility for this combination of symptoms is Lyme Disease, except that the numbness of the tongue would be more unusual in Lyme.
Cluster migraines are a horrible thing to go through. You have my sympathies. When I looked up the combination of cluster headaches and MS, they have been described together. It doesn't sound like it is very common, but quite possible. The first link below is on the higher incidence of headaches of all kinds in MS.
Nancy and Kim both - I found a couple articles describing MS and Trigeminal Neuralgia which was misdiagnosed as cluster headaches. Good job, Nanners!! I love it when things sort of come together as we get more information. The second link discusses this about the 6th article down.
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1468-2982.1999.019008732.x?journalCode=cha
http://www.medscape.com/viewarticle/431442
Kim - Your story of repeated suspicions for MS along with repeated MRIs with lesions is very interesting. Yes, migraine disease does cause small "punctate" lesions and they could accrue over time. But, the types of numbness and weakness you have is really suggestive of MS. And the history of attacks separated by years of normalcy is also quite characteristic of Relapsing (attacks) Remitting (resolution) MS.
People with MS are not sicker than the general population. It is a myth that they have more illneses. Do you recall, though, if any of your bouts of "cluster headaches" followed a cold or an infection?
Do you have any of the other common symptoms of MS? During the bouts of headaches, any severe fatigue. Do you have problems with getting overheated? Does heat ever bring on a headache?
From what you have told us, I understand why the interest by your Drs in MS, but it is not clear what exactly you're going through. I am not an expert in headache, by any measure. The concern, though, is - If this is MS, even though you are practically without symptoms almost all of the time, you are at risk of increasing brain lesions and a "subacute" development of disability (the disability is developing but is not yet symptomatic). When it appears, it can do so with a real nastiness and irreversable loss of function. In my mind the issue needs to be settled so 1) if it isn't MS you don't need to feel hounded by the spector of it, and 2) if it is MS you can take active steps to slow the brain's accumulation of lesions.
We all wish there was one foolproof test for MS. There is not. It can be an art to diagnose. What are your thoughts about going to a major MS center and getting all of this sorted out. The testing is better than it was 7 years ago. You should have a repeat MRI of the brain and spine with and without contrast. (If there are lesions on the spine it would point strongly toward MS, as migraines do not cause lesions there). You need at least a Visual Evoked Potential and probably another spinal tap if the MRIs don't tell the whole story.
Is this what you were asking? If not, fire away and I'll try again. Quix
My bad!
Flogged! I know there are some out there that would pay extra for that kinda of treatment. Its a little extreme for my tastes, I am sorry for the mistake.. please don't flog me. Tie me up and do anything else but please NO FLOGGING!
Flogged! I know there are some out there that would pay extra for that kinda of treatment. Its a little extreme for my tastes, I am sorry for the mistake.. please don't flog me. Tie me up and do anything else but please NO FLOGGING!
LOL!!
Kim I am not diagnosed and am not at all sure I have MS at all, although something strange is going on with my nervous system. I too had suffered Cluster migraines. I had shooting electric type pain through my left temple. As quickly as they would come on, they went away that quickly. These shooting pains would last for days and weeks they would remit for a bit and resurface with a vengence. This occured for about a year with constant shooting pains day in and day out for several months. I landed in the ER because I thought my brain was going to explode. They admitted me because IM pain killers did nothing for the pain. This all happened in the mid 80's. I started to have nerve problems, muscle burning, twitching, various viral infections etc. in 2000 and beyond. I have wondered if the Cluster migraines could have been Trigeminal Neuralgia.
Good luck in your quest for a diagnosis.
Nanners
Kim I am not diagnosed and am not at all sure I have MS at all, although something strange is going on with my nervous system. I too had suffered Cluster migraines. I had shooting electric type pain through my left temple. As quickly as they would come on, they went away that quickly. These shooting pains would last for days and weeks they would remit for a bit and resurface with a vengence. This occured for about a year with constant shooting pains day in and day out for several months. I landed in the ER because I thought my brain was going to explode. They admitted me because IM pain killers did nothing for the pain. This all happened in the mid 80's. I started to have nerve problems, muscle burning, twitching, various viral infections etc. in 2000 and beyond. I have wondered if the Cluster migraines could have been Trigeminal Neuralgia.
Good luck in your quest for a diagnosis.
Nanners
Hi, Kim, I'll read both of your posts and answer tonight. I'm back in stride.
Johnny, it's okay. We'll have you flogged later.
Quix
Johnny, it's okay. We'll have you flogged later.
Quix
Boy Johnny, you messed up. Before our Quix was an Angel she was a real doctor. lol Your gonna be in so much trouble. lol For some reason I got a good laugh out of that. Sorry if you think I'm being mean but I can't help it.
Kim, I agree with Johnny, I haven't heard to many people complain with your symptoms. There may be some and I just missed them or forgot. How many lesions do you have and where they typical for MS? What did they tell you about them? A little more information might help.
I'll be praying,
Carol
Kim, I agree with Johnny, I haven't heard to many people complain with your symptoms. There may be some and I just missed them or forgot. How many lesions do you have and where they typical for MS? What did they tell you about them? A little more information might help.
I'll be praying,
Carol
There is no single test that confirms MS. You eliminate other diseases and look for clinical confirmation. You have lesions, by themselves it might limit the number of diseases to say 30 (just a number). With other evidence such as a spinal tap that shows banding (an MS marker), or with Optic Neuritis (vision problems that last more than 24-hrs), or with loss of use of say your right are for more than 24-hrs they will begin to suspect MS. But it will normally take years to arrive at that dx, unless by chance you see a neuro that is a specialist in MS as well.
Numbness in the head or face is not something I have heard much about in this circle. Numbness in the extremities seems more common, blurred vision could be MS related, and lack of taste again is not something I have seen much in my readings or this forum. These people in this forum are pretty well informed (Thanks Quix).
Maybe if Quix is feeling up to it she might be able to chime in and give you a better understanding of your symptoms. She was a nurse before she became an Angel.
Johnny
Numbness in the head or face is not something I have heard much about in this circle. Numbness in the extremities seems more common, blurred vision could be MS related, and lack of taste again is not something I have seen much in my readings or this forum. These people in this forum are pretty well informed (Thanks Quix).
Maybe if Quix is feeling up to it she might be able to chime in and give you a better understanding of your symptoms. She was a nurse before she became an Angel.
Johnny
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