NaomiWise
07-31-2004, 01:02 PM
I posted a thread a few days ago about my intial symptoms. Well, I had my MRI yesterday and the doctor says I have lesions. So next week I go to a MS speacialist at Duke. Until then I have so many questions and I'm so scared. If you can answer any of the following I'd sure appreciate it.
*For a month I've had troubles w/ my right leg and foot. Last night after a stress filled day my left hand/arm began to "not work" right. Is this uncommon? Is it possible to have multiple areas of attack during one flare up?
*Is it common for a flare up to last over a month?
*After the flare up can I expect to be able to regain most of the use of these limbs?
*Please forgive me, but, I'm having "problems" with intimacy w/ my husband. Will this resolve after the flare up?
*Now my major fear is no longer MS, but having progressive MS. Please assure me this is unlikely.
*Is it better to take it easy on my affected limbs or force them to act as they should?
*Can I "rewire" my brain to work this limbs?
I hate to ask so many questions but I'm really scared and I need for someone to tell me this is going to be alrgiht. I'm a wife and the mother of a 12 year old boy. They need me and I want to fight to be there for them.
NaomiWise
*For a month I've had troubles w/ my right leg and foot. Last night after a stress filled day my left hand/arm began to "not work" right. Is this uncommon? Is it possible to have multiple areas of attack during one flare up?
*Is it common for a flare up to last over a month?
*After the flare up can I expect to be able to regain most of the use of these limbs?
*Please forgive me, but, I'm having "problems" with intimacy w/ my husband. Will this resolve after the flare up?
*Now my major fear is no longer MS, but having progressive MS. Please assure me this is unlikely.
*Is it better to take it easy on my affected limbs or force them to act as they should?
*Can I "rewire" my brain to work this limbs?
I hate to ask so many questions but I'm really scared and I need for someone to tell me this is going to be alrgiht. I'm a wife and the mother of a 12 year old boy. They need me and I want to fight to be there for them.
NaomiWise
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elecchic1022
07-31-2004, 04:20 PM
Hi Naomiwise,
I just read both of your posts.
To address the first one, no, I don't get the burning in my toes, but I have heard on other MS message boards that they have experienced that. The only thing that I may have in common is that swelling feeling. I get it in both of my legs from knee to ankle. It feels like my skin is stretching, yet there isn't any swelling.
I am glad that you had an MRI, and that they were able to give you results so quickly. Some wait for weeks for an MRI reading.
It is important to educated yourself about this disease. I am not a doctor, but I have MS, and just started Avonex 2 years after my first exacerbation (after being in denial for 2 years). I have found these message boards to be a great way to compare stories, and to get useful information.
I would imagine that your appointment at Duke will help you sort out the stage of MS you have.
I have read that flareups can occur in some people as often as everyday, every week, every month, every year. Everyone is different. I consider myself lucky. I have had only 2 flares. The initial one, and then the 2nd about 22 months later. The second was very minor, compared to the first.
It took me approximately 9 months to fully recover from my first flare(only a left hand tremor remains). I feel that I am almost fully recovered from my second which was in Feb.'04. I have Relapsing/Remitting MS. I will flare, and almost fully recover.
Hard to say about whether or not to use your limbs. I was told to continue walking, exercise, etc. when I was first dx'd. I would wait to see what they say at Duke.
My daughter was 11 when this happened to me. She is now 13. She is the one that gives me my injections in the areas that I can't do myself. My husband isn't ready to do them for me yet....squeemish.
I too, protect my husband and daughter from anything that seems to happen. My last flare, I didn't tell anyone, until after I had had some tests. Then, I down played the whole thing.
That is why I think it is good for those of us, who don't want to worry our families, to keep in contact on these boards. Nobody can understand this disease better than those that have it, and how it can affect a family.
I am 42 years old, and I am determined to ride this out until there is a cure.
There are all sorts of clinical trials out there that are very promising. Help for us is around the corner!
The best thing to do is to stop stressing about this new dx (stress can cause another flare-up). Do something for yourself, or keep yourself busy so that you aren't getting anxious. Try to think positively: Best to be dx'd now than 10 years ago. The treatment then was almost nill. I like to think of this as just another chapter in my life. I hope you can find it in yourself to cope, but it took me a while to feel this way.
When do you have your Duke appointment?
I wish you all the best, and take care of YOU!
Chrissy
I just read both of your posts.
To address the first one, no, I don't get the burning in my toes, but I have heard on other MS message boards that they have experienced that. The only thing that I may have in common is that swelling feeling. I get it in both of my legs from knee to ankle. It feels like my skin is stretching, yet there isn't any swelling.
I am glad that you had an MRI, and that they were able to give you results so quickly. Some wait for weeks for an MRI reading.
It is important to educated yourself about this disease. I am not a doctor, but I have MS, and just started Avonex 2 years after my first exacerbation (after being in denial for 2 years). I have found these message boards to be a great way to compare stories, and to get useful information.
I would imagine that your appointment at Duke will help you sort out the stage of MS you have.
I have read that flareups can occur in some people as often as everyday, every week, every month, every year. Everyone is different. I consider myself lucky. I have had only 2 flares. The initial one, and then the 2nd about 22 months later. The second was very minor, compared to the first.
It took me approximately 9 months to fully recover from my first flare(only a left hand tremor remains). I feel that I am almost fully recovered from my second which was in Feb.'04. I have Relapsing/Remitting MS. I will flare, and almost fully recover.
Hard to say about whether or not to use your limbs. I was told to continue walking, exercise, etc. when I was first dx'd. I would wait to see what they say at Duke.
My daughter was 11 when this happened to me. She is now 13. She is the one that gives me my injections in the areas that I can't do myself. My husband isn't ready to do them for me yet....squeemish.
I too, protect my husband and daughter from anything that seems to happen. My last flare, I didn't tell anyone, until after I had had some tests. Then, I down played the whole thing.
That is why I think it is good for those of us, who don't want to worry our families, to keep in contact on these boards. Nobody can understand this disease better than those that have it, and how it can affect a family.
I am 42 years old, and I am determined to ride this out until there is a cure.
There are all sorts of clinical trials out there that are very promising. Help for us is around the corner!
The best thing to do is to stop stressing about this new dx (stress can cause another flare-up). Do something for yourself, or keep yourself busy so that you aren't getting anxious. Try to think positively: Best to be dx'd now than 10 years ago. The treatment then was almost nill. I like to think of this as just another chapter in my life. I hope you can find it in yourself to cope, but it took me a while to feel this way.
When do you have your Duke appointment?
I wish you all the best, and take care of YOU!
Chrissy
NaomiWise
07-31-2004, 04:46 PM
Thanks so much Chrissy for the response!
You say your first flareup was bad. I take it that it was with your arm since you mention that you were left with a tremor in your hand. Did you lose full use of the arm/hand at the time of the flare up?
You mention that they may be able to help me sort out the stage MS I have. I was wondering about that. I am, of course, afraid of having a bad form of MS. Is it possible for them to help me figure out the type of have pretty quickly? I thought they'd have to see a few flareups to know where I am going with this.
My appt at Duke is on Wednesday. I have been so fortunate. I have a wonderful family doctor that got a physical therapist involved quickly and had my MRI read within hours of the test. He called Duke and got me an appt within a week.
I am 35. I am hoping a young age, a quick diagnosis and starting on a treatment plan soon will help give me a better chance.
There is so much to learn. I'm trying just to get past the fear at this point.
Thanks again!
NaomiWise
You say your first flareup was bad. I take it that it was with your arm since you mention that you were left with a tremor in your hand. Did you lose full use of the arm/hand at the time of the flare up?
You mention that they may be able to help me sort out the stage MS I have. I was wondering about that. I am, of course, afraid of having a bad form of MS. Is it possible for them to help me figure out the type of have pretty quickly? I thought they'd have to see a few flareups to know where I am going with this.
My appt at Duke is on Wednesday. I have been so fortunate. I have a wonderful family doctor that got a physical therapist involved quickly and had my MRI read within hours of the test. He called Duke and got me an appt within a week.
I am 35. I am hoping a young age, a quick diagnosis and starting on a treatment plan soon will help give me a better chance.
There is so much to learn. I'm trying just to get past the fear at this point.
Thanks again!
NaomiWise
elecchic1022
07-31-2004, 06:33 PM
Hi Naomi,
The first time I had an exisode, of course, I had no idea what it was, but knew something was terribly wrong.
It can on suddenly: double vision when I looked to the left (lasted 3 days), off balance, weakness on my left side, numbness on the left side of my face, confusion, stumbling over my words, and extreme fatigue(fell asleep during my first MRI)and this tremor. Gradually all symptoms faded away with no treatment, except for lipitor, folic acid and a baby asprin a day. Initially, my neuro thought that I had had a mini-stroke.
My next test came about 2 months after that incident. It was a spinal tap (lumbar puncture). It came back positive for excess protein of some sort. I only had on tiny spot on my brain according to my MRI, on the right side of my brain stem. I was more or less diagnosed at that time with MS. But, still no treatment.
Six months later, the spot was gone, and another MRI one year after that, and no spots at all. At this time, my neuro wanted me to start treatment with weekly injections of Avonex. I said "No." I was better, not worse.
Then this most recent flare was in Feb., and my sx's were dizzyness, even when I was sleeping and turned over in bed. Also, sleep apnea. Both came on suddenly. After seeing my PC doc, then an ENT, who rans some inner/middle ear tests (much like Evoked Potentials test used also to test for MS), they sent me on to my neuro. That is when I finally decided it was best to start my Avonex treatment.
So, yes, it is true that some neuro's have a wait-and-see approach to the treatment. They usually look for another flare. My sx'd happened all at once, then got better. I didn't have new sx's appear every day or week. That would have been a sign that things were getting worse.
I am amazed at how fast you are going to be seen at Duke. You are very lucky. I am sure that they will set the course for you, and you can be a part of it too. If you want immediate treatment, tell them you do. They will usually abide. Especially if you keep getting new sx's.
I honestly don't know if age helps or not. Most dx's occur between ages 20 and 40. I am a late bloomer. I think what you and I have on our sides is the possibility of treatment to slow the progression and lessen the severity of the flareup. And the possibility of a cure some day soon.
You can educate yourself through the Multiple Sclerosis Association of American, and through the National Multiple Sclerosis Society. Both have helpful information on their websites, but I don't think I can post them here.
All the best to you,
Chrissy
The first time I had an exisode, of course, I had no idea what it was, but knew something was terribly wrong.
It can on suddenly: double vision when I looked to the left (lasted 3 days), off balance, weakness on my left side, numbness on the left side of my face, confusion, stumbling over my words, and extreme fatigue(fell asleep during my first MRI)and this tremor. Gradually all symptoms faded away with no treatment, except for lipitor, folic acid and a baby asprin a day. Initially, my neuro thought that I had had a mini-stroke.
My next test came about 2 months after that incident. It was a spinal tap (lumbar puncture). It came back positive for excess protein of some sort. I only had on tiny spot on my brain according to my MRI, on the right side of my brain stem. I was more or less diagnosed at that time with MS. But, still no treatment.
Six months later, the spot was gone, and another MRI one year after that, and no spots at all. At this time, my neuro wanted me to start treatment with weekly injections of Avonex. I said "No." I was better, not worse.
Then this most recent flare was in Feb., and my sx's were dizzyness, even when I was sleeping and turned over in bed. Also, sleep apnea. Both came on suddenly. After seeing my PC doc, then an ENT, who rans some inner/middle ear tests (much like Evoked Potentials test used also to test for MS), they sent me on to my neuro. That is when I finally decided it was best to start my Avonex treatment.
So, yes, it is true that some neuro's have a wait-and-see approach to the treatment. They usually look for another flare. My sx'd happened all at once, then got better. I didn't have new sx's appear every day or week. That would have been a sign that things were getting worse.
I am amazed at how fast you are going to be seen at Duke. You are very lucky. I am sure that they will set the course for you, and you can be a part of it too. If you want immediate treatment, tell them you do. They will usually abide. Especially if you keep getting new sx's.
I honestly don't know if age helps or not. Most dx's occur between ages 20 and 40. I am a late bloomer. I think what you and I have on our sides is the possibility of treatment to slow the progression and lessen the severity of the flareup. And the possibility of a cure some day soon.
You can educate yourself through the Multiple Sclerosis Association of American, and through the National Multiple Sclerosis Society. Both have helpful information on their websites, but I don't think I can post them here.
All the best to you,
Chrissy
elecchic1022
07-31-2004, 06:37 PM
Naomi,
P.S. Very important to not get overheated. It won't cause a flare, but it can mimic one, or fatigue you. Consider an airconditioner for your home if you don't already have one. This, of course, only if you have a firm diagnosis.
P.S. Very important to not get overheated. It won't cause a flare, but it can mimic one, or fatigue you. Consider an airconditioner for your home if you don't already have one. This, of course, only if you have a firm diagnosis.
Jewel2
07-31-2004, 07:54 PM
I posted a thread a few days ago about my intial symptoms. Well, I had my MRI yesterday and the doctor says I have lesions. So next week I go to a MS speacialist at Duke. Until then I have so many questions and I'm so scared. If you can answer any of the following I'd sure appreciate it.
Hi Naomi,
I can only answer you from my daughter's experience and from what I've read of others'.
*For a month I've had troubles w/ my right leg and foot. Last night after a stress filled day my left hand/arm began to "not work" right. Is this uncommon? Is it possible to have multiple areas of attack during one flare up?
Yes, stress and heat are the biggest triggers for attacks. And unfortunately it is very common to have multiple symptoms at the same time. It all depends on where the demyelinating action is occuring.
*Is it common for a flare up to last over a month?
Again, unfortunately the answer is yes. Steroid treatment can shorten the duration of attacks, but they can go on for weeks or even months. Staying calm and staying cool really helps.
*After the flare up can I expect to be able to regain most of the use of these limbs?
MS is so unpredictable. Some people bounce back quite a bit once the flare is over; others are left with a little less use each time. As you learn about MS you'll understand that when the body gives its best shot to repair the myelin on the nerve ending it is never as good as the original thing. So the nerves don't conduct as well. The degree of recovery depends on the severity of the demyelination and the success of the 'repair'.
*Please forgive me, but, I'm having "problems" with intimacy w/ my husband. Will this resolve after the flare up?
Don't ever feel bad about asking these kinds of questions. They are very much a part of dealing with MS. My daughter and I talk frankly about this topic. She has problems in this department, too. Lots of things factor in - diminshed libido, nerve pain and fatigue. It does tend to cycle with the flares. If you can try to really get to the core of what's causing the problems, you can look for the remedy. For example, my daughter takes neurontin and topomax to help with the nerve pain. Don't be afraid to discuss this topic with your doctor. There might be help out there for you. My daughter also sees a chronic pain pharm-psychiatrist who helps her.
*Now my major fear is no longer MS, but having progressive MS. Please assure me this is unlikely.
At the outset it is unlikely that you have progressive MS. Most cases are relapsing-remitting. You will only know for sure after time has past and your symptoms and MRI's begin to tell the story.
I would assume that you'll be discussing a drug therapy with your specialist. Although these are not foolproof help against progression, they do help slow it down. The earlier you start, the better.
*Is it better to take it easy on my affected limbs or force them to act as they should?
I think somebody with MS could better answer this question. I know that if my daughter pushes her body too much, it fails faster. I know it's a fine line, but it is important to exercise as much as reasonably possible. And stretching is extremely important.
*Can I "rewire" my brain to work this limbs?
I'm not a doctor or expert, but I don't think so. Staying calm and cool are the best things you can do.
I hate to ask so many questions but I'm really scared and I need for someone to tell me this is going to be alrgiht. I'm a wife and the mother of a 12 year old boy. They need me and I want to fight to be there for them.
Don't ever feel bad about asking questions. I truly understand your fears. Really. You're doing the best thing possible by getting educated. I hope your husband is learning about MS right along side you. That's important as his support will be valuable.
Your life is going to change. There's no getting around that. But it's not over, it's just different. You are the same loving wife and mother you've always been, you just have MS. We have the amazing capacity to adjust. It just takes some time and help from others along the way. Look for a support group in your area.
Best wishes,
Julie
Hi Naomi,
I can only answer you from my daughter's experience and from what I've read of others'.
*For a month I've had troubles w/ my right leg and foot. Last night after a stress filled day my left hand/arm began to "not work" right. Is this uncommon? Is it possible to have multiple areas of attack during one flare up?
Yes, stress and heat are the biggest triggers for attacks. And unfortunately it is very common to have multiple symptoms at the same time. It all depends on where the demyelinating action is occuring.
*Is it common for a flare up to last over a month?
Again, unfortunately the answer is yes. Steroid treatment can shorten the duration of attacks, but they can go on for weeks or even months. Staying calm and staying cool really helps.
*After the flare up can I expect to be able to regain most of the use of these limbs?
MS is so unpredictable. Some people bounce back quite a bit once the flare is over; others are left with a little less use each time. As you learn about MS you'll understand that when the body gives its best shot to repair the myelin on the nerve ending it is never as good as the original thing. So the nerves don't conduct as well. The degree of recovery depends on the severity of the demyelination and the success of the 'repair'.
*Please forgive me, but, I'm having "problems" with intimacy w/ my husband. Will this resolve after the flare up?
Don't ever feel bad about asking these kinds of questions. They are very much a part of dealing with MS. My daughter and I talk frankly about this topic. She has problems in this department, too. Lots of things factor in - diminshed libido, nerve pain and fatigue. It does tend to cycle with the flares. If you can try to really get to the core of what's causing the problems, you can look for the remedy. For example, my daughter takes neurontin and topomax to help with the nerve pain. Don't be afraid to discuss this topic with your doctor. There might be help out there for you. My daughter also sees a chronic pain pharm-psychiatrist who helps her.
*Now my major fear is no longer MS, but having progressive MS. Please assure me this is unlikely.
At the outset it is unlikely that you have progressive MS. Most cases are relapsing-remitting. You will only know for sure after time has past and your symptoms and MRI's begin to tell the story.
I would assume that you'll be discussing a drug therapy with your specialist. Although these are not foolproof help against progression, they do help slow it down. The earlier you start, the better.
*Is it better to take it easy on my affected limbs or force them to act as they should?
I think somebody with MS could better answer this question. I know that if my daughter pushes her body too much, it fails faster. I know it's a fine line, but it is important to exercise as much as reasonably possible. And stretching is extremely important.
*Can I "rewire" my brain to work this limbs?
I'm not a doctor or expert, but I don't think so. Staying calm and cool are the best things you can do.
I hate to ask so many questions but I'm really scared and I need for someone to tell me this is going to be alrgiht. I'm a wife and the mother of a 12 year old boy. They need me and I want to fight to be there for them.
Don't ever feel bad about asking questions. I truly understand your fears. Really. You're doing the best thing possible by getting educated. I hope your husband is learning about MS right along side you. That's important as his support will be valuable.
Your life is going to change. There's no getting around that. But it's not over, it's just different. You are the same loving wife and mother you've always been, you just have MS. We have the amazing capacity to adjust. It just takes some time and help from others along the way. Look for a support group in your area.
Best wishes,
Julie
HeatherJM
07-31-2004, 09:18 PM
Hey Naomi! :wave:
Your question: (how pathetic of me... I don't know how to 'quote'.. LOL)
"Is it better to take it easy on my affected limbs or force them to act as they should?"
Having MS and from my experience only, I wouldn't recommend pushing it. Your body can only do so much and when you push it past it's limits, it only gets worse. The one thing that I have learned is to listen to my body. When my legs feel as though I've got a kid attached to each leg and trying to run uphill, I know its time to chill. Forcing your body to go beyond will only make matters worse and your fatigue and weakness will only increase. Thats my experience anyways.
As Julie explained, don't be afraid to ask questions here, because you know what? Very few of us have day to day people in our lives who suffer with what we do, so we can't ask these questions of people who know first hand. This is the place where people will confirm that its NOT in your head and that they get that TOO!! :D It's the place where the nerves can settle and you can learn many tips!
Cheers to feeling better and soothing what ails us.. :)
Your question: (how pathetic of me... I don't know how to 'quote'.. LOL)
"Is it better to take it easy on my affected limbs or force them to act as they should?"
Having MS and from my experience only, I wouldn't recommend pushing it. Your body can only do so much and when you push it past it's limits, it only gets worse. The one thing that I have learned is to listen to my body. When my legs feel as though I've got a kid attached to each leg and trying to run uphill, I know its time to chill. Forcing your body to go beyond will only make matters worse and your fatigue and weakness will only increase. Thats my experience anyways.
As Julie explained, don't be afraid to ask questions here, because you know what? Very few of us have day to day people in our lives who suffer with what we do, so we can't ask these questions of people who know first hand. This is the place where people will confirm that its NOT in your head and that they get that TOO!! :D It's the place where the nerves can settle and you can learn many tips!
Cheers to feeling better and soothing what ails us.. :)
NaomiWise
07-31-2004, 10:19 PM
All of you are helping so much with your answers. I know that fear of the unknown is my biggest obstacle. Thats why I need your help to get me past this. I'm a strong person....but I've also been a healthy person so I've never had to deal with much except for migraines. This is new territory for me. I'm lucky to have a resource such as all of you to help me!
-Naomi
-Naomi
elecchic1022
08-01-2004, 02:12 AM
Hi Naomi,
I also have lived my life with few problems. A cold here and there, maybe a broken bone or two, my own fault...extremely healthy, low blood pressure, correct weight for my height, and active. I guess we all got blindsided with this...It just comes out of nowhere. Chin up!
Chrissy
I also have lived my life with few problems. A cold here and there, maybe a broken bone or two, my own fault...extremely healthy, low blood pressure, correct weight for my height, and active. I guess we all got blindsided with this...It just comes out of nowhere. Chin up!
Chrissy