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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
The doctor that said that vertical double vision is not a normal symptoms of optic neuritis, was right on....he is correct.
I am very worried about your symptoms. I'll be honest...when it comes to the eyes, I feel there is no more precious gift to man, than our eyesight. It's nothing to fool around with. Any symptoms involving the eyes are something to jump on quickly. I don't like taking ANY chances with my eyesight and I am sure you don't either.
Please request that they do your MRI with and without contrast dye. Even if "they feel it isn't necessary." Insist on it. You are the one paying for the test or yeah the insurance company, but you are the patient...you have a right to ask that while you are going through all the trouble of an MRI, then it ought to be done completely, so there are no questions later. Let's say they find a lesion and they did NOT use contrast dye...they later say, gee I wonder if that was an active lesion...wish we would have done the MRI with contrast." See? Why shouldn't they go ahead and use the dye so you can call your MRI a true, complete picture?
I would like to see our resident, retired doctor, Quix answer your question. She is really up to date with symptoms of the eyes, since she suffers from problems herself. She can give you the best advice, as can other's that experience the same symptoms of the eye as you.
Isn't it a shame that we dont have enough doctor's to really sit down with us and discuss ALL of our concerns and questions? Is a shame that most of us feel rushed and more confused about what's going on AFTER we leave the doctor's office? I am glad you came to this forum...you will get opinions from people that suffer from the same kinds of things you do and won't be RUSHED.
We are here to listen and offer our support. As you will see, you WILL get that and more. This group is what I lovingly call, the group of "Angels with Invisible Wings." They are a group, unlike any other and are truly loving angels. They just don't type words of encouragement, they go through it WITH you. Trust me on this. They are a group unlike any other I have had the pleasure to know.
We are with you Rena. If you have any more questions, ask away. Remember what I said about the MRI with and without contrast dye. You can even tell your doctor what I said, about feeling that it's important. Better to have that "full" picture than have to go through another MRI, just to do one with contrast. I have heard of this happening, more times that I can count. It puts a strain on the patient as well as the medical system and insurance company's.
Heather
P.S. If I have made any typos or mixed up any sentences, forgive me. I am in a bit of flair-up right now and having trouble with words and eyesight. If it weren't for the delete and do over features, I would sound like an idiot, trying to express myself....Hey, maybe I do sound like an idiot, with or without the delete key.....LOL
I am very worried about your symptoms. I'll be honest...when it comes to the eyes, I feel there is no more precious gift to man, than our eyesight. It's nothing to fool around with. Any symptoms involving the eyes are something to jump on quickly. I don't like taking ANY chances with my eyesight and I am sure you don't either.
Please request that they do your MRI with and without contrast dye. Even if "they feel it isn't necessary." Insist on it. You are the one paying for the test or yeah the insurance company, but you are the patient...you have a right to ask that while you are going through all the trouble of an MRI, then it ought to be done completely, so there are no questions later. Let's say they find a lesion and they did NOT use contrast dye...they later say, gee I wonder if that was an active lesion...wish we would have done the MRI with contrast." See? Why shouldn't they go ahead and use the dye so you can call your MRI a true, complete picture?
I would like to see our resident, retired doctor, Quix answer your question. She is really up to date with symptoms of the eyes, since she suffers from problems herself. She can give you the best advice, as can other's that experience the same symptoms of the eye as you.
Isn't it a shame that we dont have enough doctor's to really sit down with us and discuss ALL of our concerns and questions? Is a shame that most of us feel rushed and more confused about what's going on AFTER we leave the doctor's office? I am glad you came to this forum...you will get opinions from people that suffer from the same kinds of things you do and won't be RUSHED.
We are here to listen and offer our support. As you will see, you WILL get that and more. This group is what I lovingly call, the group of "Angels with Invisible Wings." They are a group, unlike any other and are truly loving angels. They just don't type words of encouragement, they go through it WITH you. Trust me on this. They are a group unlike any other I have had the pleasure to know.
We are with you Rena. If you have any more questions, ask away. Remember what I said about the MRI with and without contrast dye. You can even tell your doctor what I said, about feeling that it's important. Better to have that "full" picture than have to go through another MRI, just to do one with contrast. I have heard of this happening, more times that I can count. It puts a strain on the patient as well as the medical system and insurance company's.
Heather
P.S. If I have made any typos or mixed up any sentences, forgive me. I am in a bit of flair-up right now and having trouble with words and eyesight. If it weren't for the delete and do over features, I would sound like an idiot, trying to express myself....Hey, maybe I do sound like an idiot, with or without the delete key.....LOL
I realize that you are not a doctor but I am finding a lot more information from MS patients than any doctor so far...that should tell us something shouldn't it?
I have had an MRI previously and yes there were lesions at that time. I am not sure at this time if they will be using contrast dye or not but I am a little concerned because the neurologist has requested that I have the MRI so quickly (I had my appointment with him on Thursday and I am scheduled for Monday). When I had the vertical double vision I did go to the ER and they did a CT Scan and a Neuro test as well as tested my levels for the drugs I am on and it all came back normal and there was no mention of optic neuritis other than the dr. stated that vertical double vision is not a normal symptom of optic neuritis and I had no pain during eye movement. Geez...the more I look at all this the more nervous I get!
I have had an MRI previously and yes there were lesions at that time. I am not sure at this time if they will be using contrast dye or not but I am a little concerned because the neurologist has requested that I have the MRI so quickly (I had my appointment with him on Thursday and I am scheduled for Monday). When I had the vertical double vision I did go to the ER and they did a CT Scan and a Neuro test as well as tested my levels for the drugs I am on and it all came back normal and there was no mention of optic neuritis other than the dr. stated that vertical double vision is not a normal symptom of optic neuritis and I had no pain during eye movement. Geez...the more I look at all this the more nervous I get!
I was counting the symptoms and was saddened that I have a majority of things wrong with me. Not sure if this means I'm still in a flair up, or if I'm in the category of "not returning to pre-flair up self." Today was a GOOD day though! For the first time in a long time, I went with my husband to take the dog for a walk. I probably overdid it because I felt so good. I even ran with the dog a little bit. But it felt so good to be able to do it that I just couldn't help it! Thanks for the information Healther! Angela
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
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.
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