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The Anatomy of an MS Flair-up!
During a flair-up of MS or as you will soon see; symptoms can be from many sources or disorders other than MS. They can occur during a flair-up or remain constant. Neurological diseases produce some strange sensations. Please keep in mind that these are only examples. This is not a complete list; but the most commonly experienced symptoms.
* Pain upon movement of your eye/blurred vision-even temporary blindness, commonly known as Optic Neuriitis.
* Trouble walking on an uneven surface. Carpeting that is too spongy, sand, tall grass; even being unable to walk in the dark. Walking as if you are walking through quick sand. Upon closing your eyes; knowing where your body parts are in relation to space, i.e., close your eyes and see if you can tell in what position your leg is in. Is it tucked under you? Is it stretched out? Do you know at all?
*Extreme heaviness in the legs, becoming even worse with over-exertion
* One side of your torso or body being numb with tingling and/or a burning sensations-numbness in any body part /face or even your scalp
* Spasms, usually in the legs, but can be in various areas of the body.
* Slurring speech, not being able to "find" words you want to use, mixing words up in a sentence.
* Short-term memory problems, remembering dates, people's name, days of the week, etc.
* Unable to stay on task, then having trouble restarting the project you were trying to accomplish
* Excess noise or sounds being very irritating; as in hearing loud music, too many people talking at one time, resulting in total confusion
* PAIN-burning, stabbing, achiness, pulling sensations in a muscle, cramping, etc. Some MS patients experience headaches when in a flair-up.
* Bowel or bladder problems, running the full gambit-from not being able to hold your urine, dribbling as soon as you think of urinating and not being able to control it at all, not fully emptying your bladder, (same symptoms with bowels)constipation (usually) but can alternate between constipation and diahhrea
* Fatigue-unlike anything you have experienced before. Not your usual kind of tired after a busy day, but overpowering fatigue, even after a full night's rest or fatigue after very simple exertion or heat.
* Intolerance of heat/some people intolerance to cold-symptoms becoming more pronouced if overheated/usually abating when your body temperature returns to normal (please keep in mind that if you are already in a flair-up your symptoms will increase during overheating but will decrease in severity; but not disppear after returning to your normal body temperature
* Flair-ups occur shortly after getting over any kind of infection-especially a respiratory infection. Stress can cause symptoms and put you into a flair-up. Sometimes when the stressor is removed, the symptoms will disappear.
* Walking can become difficult/for some impossible. Some people cannot walk at all during a flair-up and are wheelchair bound, (or using a walker or cane) but can resume normal walking when their flair-up is over. Of course we already know that some of our members are already in wheechairs everyday.
* Symptoms lasting more than 24 hours-sometimes lasting weeks or months and in some people with MS, never returning to your pre-flair state.
* Depression/mood swings
* Problem solving skills are affected. As with me, not knowing how to put a rubber band in my hair; lasting several seconds...to only give one example.
* Dizziness/vertigo-severe balance problems. Unable to walk without running into things or having to grab things to hold on, while trying to walk.
* Hearing difficulties. Usually one ear, not in both.
* Lack of flair-ups during pregnancy. Usually within 6 months of giving birth, the mother will go into a flair-up.
* Manual dexterity/lack of coordination
As I said in the beginning, this is not a complete list. I am hoping after compiling this list, it may help some that are diagnosed, better understand some of their symptoms. For those undiagnosed, to possibly see themselves WITH these symptoms. Maybe realize by reading over this list, that you will be able to see how confusing your Neurologist can be, when trying to diagnose MS; as these kinds of symptoms can be the result of SO MANY other disorders.
MS can be tough to diagnose. For sure! It's even harder when you have these kinds of symptoms and all your testing comes back negative. MRI's come back clear. Nothing to explain what you are going through.
'Patience' is one of the hardest words to hear, when you are waiting for the doctor's to tell you what's wrong. The symptoms are so vast and mimic so many things, that the words "time and patience," are the only things another person can offer you. Sometimes our best advice is to find another doctor.
I am not a doctor...only a person that has been living with MS for a long time. If there are any of you that want to ask any questions, I will be glad to try to answer them for you. If I can't answer them, I will tell you; but will promise to direct you to someone who may better explain. No one has all the answers....no one. Or certainly there would be a cure and a reversal of MS by now.
Try to remember when you are told to "give it time and be patient," that you are also being told that you are not alone. I, like so many others, will 'wait' with you. I will always promise to do what I can as a human being and someone with MS, to do all I can to help you get through the tough times and rejoice with you during the happy times.
God bless each and every one of you. You are all in my prayers. You have my word.
Heather
* Pain upon movement of your eye/blurred vision-even temporary blindness, commonly known as Optic Neuriitis.
* Trouble walking on an uneven surface. Carpeting that is too spongy, sand, tall grass; even being unable to walk in the dark. Walking as if you are walking through quick sand. Upon closing your eyes; knowing where your body parts are in relation to space, i.e., close your eyes and see if you can tell in what position your leg is in. Is it tucked under you? Is it stretched out? Do you know at all?
*Extreme heaviness in the legs, becoming even worse with over-exertion
* One side of your torso or body being numb with tingling and/or a burning sensations-numbness in any body part /face or even your scalp
* Spasms, usually in the legs, but can be in various areas of the body.
* Slurring speech, not being able to "find" words you want to use, mixing words up in a sentence.
* Short-term memory problems, remembering dates, people's name, days of the week, etc.
* Unable to stay on task, then having trouble restarting the project you were trying to accomplish
* Excess noise or sounds being very irritating; as in hearing loud music, too many people talking at one time, resulting in total confusion
* PAIN-burning, stabbing, achiness, pulling sensations in a muscle, cramping, etc. Some MS patients experience headaches when in a flair-up.
* Bowel or bladder problems, running the full gambit-from not being able to hold your urine, dribbling as soon as you think of urinating and not being able to control it at all, not fully emptying your bladder, (same symptoms with bowels)constipation (usually) but can alternate between constipation and diahhrea
* Fatigue-unlike anything you have experienced before. Not your usual kind of tired after a busy day, but overpowering fatigue, even after a full night's rest or fatigue after very simple exertion or heat.
* Intolerance of heat/some people intolerance to cold-symptoms becoming more pronouced if overheated/usually abating when your body temperature returns to normal (please keep in mind that if you are already in a flair-up your symptoms will increase during overheating but will decrease in severity; but not disppear after returning to your normal body temperature
* Flair-ups occur shortly after getting over any kind of infection-especially a respiratory infection. Stress can cause symptoms and put you into a flair-up. Sometimes when the stressor is removed, the symptoms will disappear.
* Walking can become difficult/for some impossible. Some people cannot walk at all during a flair-up and are wheelchair bound, (or using a walker or cane) but can resume normal walking when their flair-up is over. Of course we already know that some of our members are already in wheechairs everyday.
* Symptoms lasting more than 24 hours-sometimes lasting weeks or months and in some people with MS, never returning to your pre-flair state.
* Depression/mood swings
* Problem solving skills are affected. As with me, not knowing how to put a rubber band in my hair; lasting several seconds...to only give one example.
* Dizziness/vertigo-severe balance problems. Unable to walk without running into things or having to grab things to hold on, while trying to walk.
* Hearing difficulties. Usually one ear, not in both.
* Lack of flair-ups during pregnancy. Usually within 6 months of giving birth, the mother will go into a flair-up.
* Manual dexterity/lack of coordination
As I said in the beginning, this is not a complete list. I am hoping after compiling this list, it may help some that are diagnosed, better understand some of their symptoms. For those undiagnosed, to possibly see themselves WITH these symptoms. Maybe realize by reading over this list, that you will be able to see how confusing your Neurologist can be, when trying to diagnose MS; as these kinds of symptoms can be the result of SO MANY other disorders.
MS can be tough to diagnose. For sure! It's even harder when you have these kinds of symptoms and all your testing comes back negative. MRI's come back clear. Nothing to explain what you are going through.
'Patience' is one of the hardest words to hear, when you are waiting for the doctor's to tell you what's wrong. The symptoms are so vast and mimic so many things, that the words "time and patience," are the only things another person can offer you. Sometimes our best advice is to find another doctor.
I am not a doctor...only a person that has been living with MS for a long time. If there are any of you that want to ask any questions, I will be glad to try to answer them for you. If I can't answer them, I will tell you; but will promise to direct you to someone who may better explain. No one has all the answers....no one. Or certainly there would be a cure and a reversal of MS by now.
Try to remember when you are told to "give it time and be patient," that you are also being told that you are not alone. I, like so many others, will 'wait' with you. I will always promise to do what I can as a human being and someone with MS, to do all I can to help you get through the tough times and rejoice with you during the happy times.
God bless each and every one of you. You are all in my prayers. You have my word.
Heather
When you think of MS, try to remember what they call the Blood Brain Barrier. Almost like a sack or membrane totally surrounding your spinal cord and brain. This is our protection for our Central Nervous System (CNS) from bacteria and infections.
In MS, "something" triggers the immune system to attack this barrier; penetrating it Seeing it as foreign to the body. As some of you may know, I have named this "invader," the MS-Pac Man. He looks at the BBB and chews his way through. His favorite meal is myelin. The protective coating around our nerves in the CNS. Think of it as a brown cord around the wires going to your living room lamp. Yeah, that brown cord. Mr. Pac-Man looks at this brown protective covering as foreign and starts to chew his way through to the bare wiring.
As you can imagine, what happens to the lamp when the bare wires are exposed? It's shorts out. This is exactly what happens to the coating called myelin. Once eaten away it can cause a "short-circuit." The messages being sent along that pathway are disrupted. So the message being sent by the brain are slowed down, short-circuited or don't get through at all.
In the beginning stages of MS, the body is able to repair this myelin. With each invasion of the MS Pac-Man, the body is less and less able to repair the damage done by his huge appetite. So the body tries to "fix" the area, by replacing it with scar tissue (in comes the "sclerosis" (scarring) part of Multiple Sclerosis) Remember your living room lamp? What happens now that the brown protective coating is missing? It short-circuits. Or you have to giggle the cord to make the lamp go on. Anybody touches that cord, what happens, the light goes off or flichers. That is exactly what is happening in the brain.
Even though you may try to fix the cord of that lamp with black electrical tape, the wiring is still damaged. It's not as efficient as it was before. The same with the scar tissue that has now formed in the brain. It is not efficient at conducting electrical impluses along it's pathways. It's signal is slowed down, jumbled or doesn't get through at all.
The brain is a remarkable organ. It now looks for another "pathway" to send it's message, since the original pathway is now damaged or slowed. Sometimes the brain can do this efficiently and sometimes it can't. So the 'signal network' doesn't work quite as well. Thus, causing the problems you experience with MS.
If you look through some of the symptoms I have listed in the first part of my post, you can see how this "short-circuiting" process, can cause you to have all kinds of symptoms. Even weird symptoms like the feeling of water running down your legs. Or the one that I hear alot from people with MS, is the "invisible mouse," that they SWEAR is running along the floor. They can see it out of the corner of their eye. But guess what, there isn't any mouse. It's a trick, from that complex network of brain connections that are now scarred and damaged.
The "ubo's," the white matter lesions, the areas of demyelination that are seen on MRI, are the result of the "work" that Mr. MS-Pac Man has been up to. (IF you are diagnosed with MS) You are seeing the results of his appetite for myelin.
If Mr. MS Pac-Man is not active and you are given the contrast dye during your MRI, the "dye" will not cross through that Blood Brain Barrier. There is no break in that membrane for the dye to penetrate, so no current lesions will "highlight." Lesions may still be seen on MRI, (These are scars) but they will not absorb any gadolinium, if you are not in a current flair-up. The Blood Brain Barrier has "resealed" itself. If any lesions "highlight," you are in a an active stage of your MS process.
If you have found any of this confusing, I apologize. As was told to me in the beginning of my disease process, this explanation was enough to start me on my way to knowing what was going on inside my CNS without the aid of having a medical degree. With me, keep it simple. I understand it better.
This has helped me, I hope that it helps you...
Best Wishes, Heather
In MS, "something" triggers the immune system to attack this barrier; penetrating it Seeing it as foreign to the body. As some of you may know, I have named this "invader," the MS-Pac Man. He looks at the BBB and chews his way through. His favorite meal is myelin. The protective coating around our nerves in the CNS. Think of it as a brown cord around the wires going to your living room lamp. Yeah, that brown cord. Mr. Pac-Man looks at this brown protective covering as foreign and starts to chew his way through to the bare wiring.
As you can imagine, what happens to the lamp when the bare wires are exposed? It's shorts out. This is exactly what happens to the coating called myelin. Once eaten away it can cause a "short-circuit." The messages being sent along that pathway are disrupted. So the message being sent by the brain are slowed down, short-circuited or don't get through at all.
In the beginning stages of MS, the body is able to repair this myelin. With each invasion of the MS Pac-Man, the body is less and less able to repair the damage done by his huge appetite. So the body tries to "fix" the area, by replacing it with scar tissue (in comes the "sclerosis" (scarring) part of Multiple Sclerosis) Remember your living room lamp? What happens now that the brown protective coating is missing? It short-circuits. Or you have to giggle the cord to make the lamp go on. Anybody touches that cord, what happens, the light goes off or flichers. That is exactly what is happening in the brain.
Even though you may try to fix the cord of that lamp with black electrical tape, the wiring is still damaged. It's not as efficient as it was before. The same with the scar tissue that has now formed in the brain. It is not efficient at conducting electrical impluses along it's pathways. It's signal is slowed down, jumbled or doesn't get through at all.
The brain is a remarkable organ. It now looks for another "pathway" to send it's message, since the original pathway is now damaged or slowed. Sometimes the brain can do this efficiently and sometimes it can't. So the 'signal network' doesn't work quite as well. Thus, causing the problems you experience with MS.
If you look through some of the symptoms I have listed in the first part of my post, you can see how this "short-circuiting" process, can cause you to have all kinds of symptoms. Even weird symptoms like the feeling of water running down your legs. Or the one that I hear alot from people with MS, is the "invisible mouse," that they SWEAR is running along the floor. They can see it out of the corner of their eye. But guess what, there isn't any mouse. It's a trick, from that complex network of brain connections that are now scarred and damaged.
The "ubo's," the white matter lesions, the areas of demyelination that are seen on MRI, are the result of the "work" that Mr. MS-Pac Man has been up to. (IF you are diagnosed with MS) You are seeing the results of his appetite for myelin.
If Mr. MS Pac-Man is not active and you are given the contrast dye during your MRI, the "dye" will not cross through that Blood Brain Barrier. There is no break in that membrane for the dye to penetrate, so no current lesions will "highlight." Lesions may still be seen on MRI, (These are scars) but they will not absorb any gadolinium, if you are not in a current flair-up. The Blood Brain Barrier has "resealed" itself. If any lesions "highlight," you are in a an active stage of your MS process.
If you have found any of this confusing, I apologize. As was told to me in the beginning of my disease process, this explanation was enough to start me on my way to knowing what was going on inside my CNS without the aid of having a medical degree. With me, keep it simple. I understand it better.
This has helped me, I hope that it helps you...
Best Wishes, Heather
Why does having MS and being exposed to heat cause more problems for you?
In order for everything in the body to work efficiently, in the absence of any disease, your body temperaure must be at or near the normal...98.6 degrees. (Although my "normal" temperature has always been 96 or 97 degrees) All the electrical impluses and signals going from your brain down the spinal cord and out to the body, work at top efficiency at a normal body temperature.
For those that do not have MS, have you ever been out in the 90 plus degree weather, done a little gardening and then come into the air-conditioning, wondering why you feel like you have just been run over by a truck? Why do you feel so wiped out? As I said, in order for everything to run smoothly in your body, your body temperature must be 98.6 or near it. When you are outside and you raise your body temperature, those electrical impluses from your brain and down your spinal cord, are slowed. All due to heat.
Now take a person whose central nervous system is already compromised by something like Multiple Sclerosis. Their electrical nerve impluses are not working at top efficency anyway because of their disease. Then add in the heat and the increased body core temperature. The electrical impluses conducted in the nerves are even slower. No wonder the symptoms of their MS are made even worse by the heat. No wonder they feel even MORE fatigued than the person that does not have MS.
As you may have noticed, when you finally cool down and your body temperature returns to normal, some symptoms of the MS, disappear. If not all.
Now does heat and having MS make any sense?
In order for everything in the body to work efficiently, in the absence of any disease, your body temperaure must be at or near the normal...98.6 degrees. (Although my "normal" temperature has always been 96 or 97 degrees) All the electrical impluses and signals going from your brain down the spinal cord and out to the body, work at top efficiency at a normal body temperature.
For those that do not have MS, have you ever been out in the 90 plus degree weather, done a little gardening and then come into the air-conditioning, wondering why you feel like you have just been run over by a truck? Why do you feel so wiped out? As I said, in order for everything to run smoothly in your body, your body temperature must be 98.6 or near it. When you are outside and you raise your body temperature, those electrical impluses from your brain and down your spinal cord, are slowed. All due to heat.
Now take a person whose central nervous system is already compromised by something like Multiple Sclerosis. Their electrical nerve impluses are not working at top efficency anyway because of their disease. Then add in the heat and the increased body core temperature. The electrical impluses conducted in the nerves are even slower. No wonder the symptoms of their MS are made even worse by the heat. No wonder they feel even MORE fatigued than the person that does not have MS.
As you may have noticed, when you finally cool down and your body temperature returns to normal, some symptoms of the MS, disappear. If not all.
Now does heat and having MS make any sense?
You are a good teacher. :) You make the info very accessible and understandable. Does this mean that if your blood-brain barrier is intact (LP says so, anyway) and MRI shows no lesions, then it's a good bet it's not MS? I ask because my brain MRI and spinal MRI were normal, and LP showed all normal except for mildly-elevated total protein (53). But no elevated IgG or WBC or bands.
Thanks for sharing the knowledge you've obviously accumulated. :)
Chris
Thanks for sharing the knowledge you've obviously accumulated. :)
Chris
Your blood brain barrier can "seal" back up after a flair-up of MS. This is why I discussed contrast dye.
As with some of MY MRI's, the contrast dye did NOT pass into my blood brain barrier, because I was not in a flair-up at the time of my testing. Saying that, my MRI did show lesions, but these are old lesions. They just did not 'highlight.' The contrast dye did not cross my BBB because it had sealed after my last attack was over.
Am I making any sense? Always keep in mind that approximately 5% of people that are diagnosed with MS or for that matter, have MS but have not gotten a diagnosis as yet; will not show any lesions on MRI.
As for your elevated protein from your LP testing, this is best answered by Quix. Of course Chris, I sincerely hope that you do NOT have MS.
Heather
As with some of MY MRI's, the contrast dye did NOT pass into my blood brain barrier, because I was not in a flair-up at the time of my testing. Saying that, my MRI did show lesions, but these are old lesions. They just did not 'highlight.' The contrast dye did not cross my BBB because it had sealed after my last attack was over.
Am I making any sense? Always keep in mind that approximately 5% of people that are diagnosed with MS or for that matter, have MS but have not gotten a diagnosis as yet; will not show any lesions on MRI.
As for your elevated protein from your LP testing, this is best answered by Quix. Of course Chris, I sincerely hope that you do NOT have MS.
Heather
I find your information very interesting and as noted before very "lay-man oriented"! Just a quick question, I had started having severe vertical double vision on Nov.6 and it continued until Nov. 15th and while the double vision has stopped I am booked for an MRI on Nov. 19th. Do you think that since the double vision has stopped, whatever the problem was in my brain may now not be visible even though it has only been a few days? I am still having a few other symptoms such as pain in my legs and hands, muscle spasms and twitches, and I am having a hard time expressing myself today.
Please remember that I am only a woman who has MS; I am not a doctor. But if you want my opinion.....
You MAY have had Optic Neuritis from November 6th through the 15th. It is usually accompanied by painful eye movement. With your MRI only scheduled a few days after 'you' feel that your vision has improved, there is a chance that something may show up on the optic nerve. May.
Since you are having other symptoms, as you described, you MAY show lesions on an MRI. I hope that they will be doing your MRI with and without contrast dye. Have you had an MRI before and did it show any lesions then? Please remember that just because we have symptoms, does not mean that lesions will show up. Especially in someone that has always had a negative MRI despite having symptoms. As I have said before, almost 5% of people that have MS, will never show lesions...
I hope that you will keep us posted and I hope you start feeling better soon.
Best Wishes, Heather
You MAY have had Optic Neuritis from November 6th through the 15th. It is usually accompanied by painful eye movement. With your MRI only scheduled a few days after 'you' feel that your vision has improved, there is a chance that something may show up on the optic nerve. May.
Since you are having other symptoms, as you described, you MAY show lesions on an MRI. I hope that they will be doing your MRI with and without contrast dye. Have you had an MRI before and did it show any lesions then? Please remember that just because we have symptoms, does not mean that lesions will show up. Especially in someone that has always had a negative MRI despite having symptoms. As I have said before, almost 5% of people that have MS, will never show lesions...
I hope that you will keep us posted and I hope you start feeling better soon.
Best Wishes, Heather
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