Aa
mild symptoms..brain lesions but everything else is negative?
Hello. I had a bout of optic neuritis about 5 years ago..had an MRI done by my primary doctor which was completely normal as far as I remember so it was pretty much just dismissed. I am now having the optic neuritis again..and this time was referred to an opthamologist who ordered an MRI and gave me 3 days of IV steroids for it. The MRI shows "innumerable" brain lesions, so he referred me to a neurologist. My clinical exam was completely normal and I am having no other symptoms other than fatigue but I also work over 40 hours a week and have 3 small children. he was at so impressed by the lesions on the brain scan he ordered an mRI of cervical scan and an LP. I just went for those results and spoke with the doctors PA..(the doctor was out of town) The spine MRI was completely normal with no lesions. The LP showed no Oligoclonal bands and a normal IGG level..the only thing abnormal was a very slight elevation of myelin protein..(normal was 1.1 and mine was 1.4) so she wants to talk to the doctor before suggesting I start MS meds..I am just very hesitant to start these meds for something we are not sure that I have. any advice or suggestions for further testing? anyone out there have mainly ONLY optic neuritis and fatigue as symtptoms? any help would be greatly appreciated. thanks so much.
The drug companies make getting the med, learning to inject and everything pretty automatic. Typically you don't need to do much at all. It usually takes only a few days, with the delay sometimes being meeting up with the nurse for training.
Injecting oneself is an odd weirdness, but one to which you soon become accustomed.
Yep, if you are dragging your leg, this is a relapse and a course of steroids might help to relieve the symptoms. Steroids are mostly for acute relief of symptoms. They may marginally improve overall disease course, but not enough to declare them first line drugs.
The side effects to the interferon-beta may happen or may not happen. But, since interferon is the substance produced in your body in response to infections and some inflammations (in the form of interferon-gamma) the side effects of muscle aches, stiffness, fever, headache are common. Those are the side effects of the self-produced interferon also. My experience is that I had about 18 hours of them - obnoxious, but relieved well enough by acetaminophen to be tolerable. I injected in the evening so just had one day of being uncomfortable. Ibuprofen or naprosyn would be a better choice bcause of their anti-inflammatory properties. I can't use them because I am allergic to them.
By four months the side effects were gone by morning and I was fine. I do recommend that you premedicate about an hour before injecting. That blunts the onset of the symptoms. When I got up in the night to pee, I would notice the symptoms the most and usually medicate again.
It will all go fine.
Quix
Injecting oneself is an odd weirdness, but one to which you soon become accustomed.
Yep, if you are dragging your leg, this is a relapse and a course of steroids might help to relieve the symptoms. Steroids are mostly for acute relief of symptoms. They may marginally improve overall disease course, but not enough to declare them first line drugs.
The side effects to the interferon-beta may happen or may not happen. But, since interferon is the substance produced in your body in response to infections and some inflammations (in the form of interferon-gamma) the side effects of muscle aches, stiffness, fever, headache are common. Those are the side effects of the self-produced interferon also. My experience is that I had about 18 hours of them - obnoxious, but relieved well enough by acetaminophen to be tolerable. I injected in the evening so just had one day of being uncomfortable. Ibuprofen or naprosyn would be a better choice bcause of their anti-inflammatory properties. I can't use them because I am allergic to them.
By four months the side effects were gone by morning and I was fine. I do recommend that you premedicate about an hour before injecting. That blunts the onset of the symptoms. When I got up in the night to pee, I would notice the symptoms the most and usually medicate again.
It will all go fine.
Quix
neuro office called and definitely want to start meds so I've decided on rebif and will start next week. It was however like 4:30 pm so I didnt get alot of info as to how do I get the prescription and the meds and when and where or how long it will take. I am feeling a bit nervous about the whole process..also have been having weird hip pain and walking w/ a limp and having to really concentate not to drag my right leg..so the PA thought I might be having a relapse and is asking the doc about IV steroids..
lol..Thanks so much for the laugh...I appreciate it! ;) No seriously the weird symptoms just started today so I hadnt told anyone...again just kind of waiting it out until the end of the week. Still just dont know how to take all of this..
Okay, now you're transitioning into the universal "hypochondriac" phase post-diagnosis, lol. Don't worry, we ALL suddenly began to be aware of every weird sensation and the errant mistake we make in speaking or typing - then wondering if it was a new symptom. You are right. It is a part of becoming more self-aware. But, it also feels somewhat neurotic, I agree. For the most part is is not. It is the sudden ability to put puzzle pieces where they belong. Many of us didn't know what to do with the symptoms we had up until diagnosis. Deciding we were overanalyzing we just ignored them or convinced ourselves everybody felt that way. Once the symptoms really start up for people like you who had a CIS that wasn't recongized, the symptoms often do start to multiply.
It's hard to know if this is a new relapse/flare up/exacerbation/exasperation :)). When a symptom was improved with steroids, you can't call it a new worsening for a minimum of a month after the steroids. This is because the improvement seen on the steroids is not a "natural" part of the relapsing and remitting of the disease. It is expected that many people will have a normal rebound of the symptom with the meds. It depends on the interval. Now, if the dizziness and stumbling is new, then it may very well be a new relapse. Your neuro will need to know this. Did you tell the PA?
I wasn't trying to talk you out of the meds. It sounds like they are totally indicated. I just wanted to put the whole thing into a perspective that would make more sense, like you said.
By the way - a couple years ago we created a new chartered Greek house here on the forum - though we haven't talked about it a lot recently. It is especially for those that are feeling like they are becoming neurotic in wondering about all their sensations. It is also for all the people who are made to FEEL neurotic by dismissive neurologists, and those that are Undiagnosed, Misdiagnosed, and those that are Diagnosed, but p!ssed off about it.
It's called Hypo Gamma Chondria and you are now a full-fledged member!
We hold weinie roasts on Friday nights to roast any of the people that treat us badly. Arrogant neuro are espeically tasty.
Quix :))
It's hard to know if this is a new relapse/flare up/exacerbation/exasperation :)). When a symptom was improved with steroids, you can't call it a new worsening for a minimum of a month after the steroids. This is because the improvement seen on the steroids is not a "natural" part of the relapsing and remitting of the disease. It is expected that many people will have a normal rebound of the symptom with the meds. It depends on the interval. Now, if the dizziness and stumbling is new, then it may very well be a new relapse. Your neuro will need to know this. Did you tell the PA?
I wasn't trying to talk you out of the meds. It sounds like they are totally indicated. I just wanted to put the whole thing into a perspective that would make more sense, like you said.
By the way - a couple years ago we created a new chartered Greek house here on the forum - though we haven't talked about it a lot recently. It is especially for those that are feeling like they are becoming neurotic in wondering about all their sensations. It is also for all the people who are made to FEEL neurotic by dismissive neurologists, and those that are Undiagnosed, Misdiagnosed, and those that are Diagnosed, but p!ssed off about it.
It's called Hypo Gamma Chondria and you are now a full-fledged member!
We hold weinie roasts on Friday nights to roast any of the people that treat us badly. Arrogant neuro are espeically tasty.
Quix :))
Thanks so much Quix. I appreciate it. the more I think about it, the more it makes sense. I am also starting to believe that just coincidentally i may be in the middle of a so called "exacerbation" The Optic neuritis seemed to go away for a few weeks after the steroids and now the vision seems to be blurred again and I have been extremely dizzy and tripping over my feet almost today. I feel like I might be insane b/c I never had these symptoms in the past and now all of the sudden I happen to have more symtptoms..I almost feel like a hypochondriac or something..but I feel that maybe I am perhaps just starting to take more notice of them right now..I am almost sure the neiro doc will want to start meds because that is what he told me..I just think the PA wasnt able to make any decisions alone..however we will see for sure...Lyme disease has already been ruled out..I know that..and a few other blood tests have been done..so What else could it be? Overwhelmed right now but its gettign better..thanks guys..
Hi, and a big welcome to the forum. We have lots of professionals here and can always use more.
You are in an enviable spot. You have very mild symptoms so far. The trouble with not having severe problems, is that it is sometimes hard to believe that you really have this "dread" disease. The reality is that MS runs a fairly mild course in about 1 out of every 7 or 8 people. The symptoms come in discreet relapses, they are a pain in the tush, but are no more than an interruption of a pretty normal life. For those people MS is nothing too life-altering.
You had an very common introduction to MS also. You had a bout of ON, but really nothing else. On that basis alone (with a negative MRI) you still had over a 40% chance of developing definite MS in the future. With your second bout of ON and a brain full of lesions you now have almost all the evidence needed to be 100% sure that this is MS.
More specifically, with 2 bouts of ON and a brain full of lesions you have over a 90% that this is definitely MS. What the neuro needs to do, if it hasn't been done already is the batch of blood tests needed to rule out the mimics of MS. Once that is done, "well, over 90% is over 90%". Very few things in life are 100%. If you get symptoms in another area of the brain or in the spinal cord, then we are talking as close to 100% as things get - IF the mimics have been checked for; things like B12 deficiency, ANA, Lyme Disease, etc.
The other thing that make people hesitate about taking one of the MS meds is thinking, "Why would I want to take such expensive meds with their potential (non-deadly, but annoying) side effects if my disease is so mild?" That is a very common question. The answer is that even with a mild beginning such as yours, it can turn disabling and more severe at any point, and usually does. The meds we have, often referred to as DMD's (Disease Modifying Medications), are currently our only hope of slowing down the relapses and getting new lesions. No, they don't help everyone, probably not even most people, but they are all we have right now.
We also know that the earlier they are used, the more effective they are. Most people here would say that days with no symptoms or mild symptoms are very precious and many wish they had had longer before things got more painful and disabling. Your chances of having a form of MS that you would want to slow down are greater than they are of having a mild course for the next 50 years. I have reported on a couple of studies that looked at people who were told they had benign MS. These studies checked up on those patients 20 or more years into their disease. Close to 30% needed assistance in walking and about that many had noticeable problems with cognitive function. About 12% had significant problems with their cognitive function (things like memory, decision-making, prioritizing, attention deficit, abstract analysis.
Here on this forum our attitude is that there is NO SUCH THING as "benign MS." One might have a mild course, but it is not known until they die, that they had a mild course for the whole time.
Which brings up a point. MS does not shorten your life span. For the people being diagnosed now, it is thought that their total life span will be very close to the average for people without MS.
Do you have to trip over your feet to start a medication this minute? Absolutely not. I would advise, in fact, that you learn more about the disease and ask all the questions you can think of first. Wait until the neurologist gets back. Talk to him at length. Be sure to ask him if the MS mimics have been ruled out. Ask questions here. We have many health professionals, and I am a physician with MS. We have learned a lot about this disease and can - or will try - to answer everything.
Do I recommend that people take an MS med as soon as it is known that they most likely have MS and the other possibilities have been ruled out. The answer is a definitive "Yes".
I hope you stay and become one of us.
Quix, MD
You are in an enviable spot. You have very mild symptoms so far. The trouble with not having severe problems, is that it is sometimes hard to believe that you really have this "dread" disease. The reality is that MS runs a fairly mild course in about 1 out of every 7 or 8 people. The symptoms come in discreet relapses, they are a pain in the tush, but are no more than an interruption of a pretty normal life. For those people MS is nothing too life-altering.
You had an very common introduction to MS also. You had a bout of ON, but really nothing else. On that basis alone (with a negative MRI) you still had over a 40% chance of developing definite MS in the future. With your second bout of ON and a brain full of lesions you now have almost all the evidence needed to be 100% sure that this is MS.
More specifically, with 2 bouts of ON and a brain full of lesions you have over a 90% that this is definitely MS. What the neuro needs to do, if it hasn't been done already is the batch of blood tests needed to rule out the mimics of MS. Once that is done, "well, over 90% is over 90%". Very few things in life are 100%. If you get symptoms in another area of the brain or in the spinal cord, then we are talking as close to 100% as things get - IF the mimics have been checked for; things like B12 deficiency, ANA, Lyme Disease, etc.
The other thing that make people hesitate about taking one of the MS meds is thinking, "Why would I want to take such expensive meds with their potential (non-deadly, but annoying) side effects if my disease is so mild?" That is a very common question. The answer is that even with a mild beginning such as yours, it can turn disabling and more severe at any point, and usually does. The meds we have, often referred to as DMD's (Disease Modifying Medications), are currently our only hope of slowing down the relapses and getting new lesions. No, they don't help everyone, probably not even most people, but they are all we have right now.
We also know that the earlier they are used, the more effective they are. Most people here would say that days with no symptoms or mild symptoms are very precious and many wish they had had longer before things got more painful and disabling. Your chances of having a form of MS that you would want to slow down are greater than they are of having a mild course for the next 50 years. I have reported on a couple of studies that looked at people who were told they had benign MS. These studies checked up on those patients 20 or more years into their disease. Close to 30% needed assistance in walking and about that many had noticeable problems with cognitive function. About 12% had significant problems with their cognitive function (things like memory, decision-making, prioritizing, attention deficit, abstract analysis.
Here on this forum our attitude is that there is NO SUCH THING as "benign MS." One might have a mild course, but it is not known until they die, that they had a mild course for the whole time.
Which brings up a point. MS does not shorten your life span. For the people being diagnosed now, it is thought that their total life span will be very close to the average for people without MS.
Do you have to trip over your feet to start a medication this minute? Absolutely not. I would advise, in fact, that you learn more about the disease and ask all the questions you can think of first. Wait until the neurologist gets back. Talk to him at length. Be sure to ask him if the MS mimics have been ruled out. Ask questions here. We have many health professionals, and I am a physician with MS. We have learned a lot about this disease and can - or will try - to answer everything.
Do I recommend that people take an MS med as soon as it is known that they most likely have MS and the other possibilities have been ruled out. The answer is a definitive "Yes".
I hope you stay and become one of us.
Quix, MD
thanks for the comments. this is such a great site and I am so glad I found it. I am sure if my neuro is convinced this is MS I will go ahead and start the DMD..he seems to be leaning toward the Rebif...Wondering if anyone has experience with that one? I was kind of thinking in my own research that copaxone might be the way to go because of less side effects. I just keep thinking back over the years and going "Gee..yeah Maybe I have had this symptom or that one" but Nothing so severe that I really had to take any action..I basically have ignored everything up until the optic neuritis affected my reading at work..I have never had ANY health problems in my whole life so all these tests..LP..MRI's..IV steroids..they are all just kind of blowing me away right now. Thanks for the support. I will definitely keep writing..
Hi Shannon,
My situation is very similar to yours except that I only have 2 small children and I work half as many hours. My symptoms are optic neuritis, fatigue, numbness in my face, hands and feet and some subtle cognitive issues. My brain MRI showed 40-50 lesions but my cervical MRI and LP were negative. I am going to have another MRI in April or May to look for any changes before proceeding with DMDs.
My neurologist explored all other obvious causes for the lesions and symptoms. All the tests were negative. So I guess MS is the only thing left.
I am curious to follow your progress and the decisions you make. I hope you keep writing.
to Kathy:
Does Provigil help? I am so tired of being tired. I have a prescription but haven't filled it yet.
Skye
My situation is very similar to yours except that I only have 2 small children and I work half as many hours. My symptoms are optic neuritis, fatigue, numbness in my face, hands and feet and some subtle cognitive issues. My brain MRI showed 40-50 lesions but my cervical MRI and LP were negative. I am going to have another MRI in April or May to look for any changes before proceeding with DMDs.
My neurologist explored all other obvious causes for the lesions and symptoms. All the tests were negative. So I guess MS is the only thing left.
I am curious to follow your progress and the decisions you make. I hope you keep writing.
to Kathy:
Does Provigil help? I am so tired of being tired. I have a prescription but haven't filled it yet.
Skye
Hi there, and welcome from me, too.
I was diagnosed in October, 2009, after 20 months of looking for answers. My symptoms were relatively mild, never had optic neuritis, most tests came back totally normal, but my brain MRI was full of lesions; 30 to 40 was a guess-estimate.
My fourth neurologist, an MS specialist, looked at that brain MRI and saw what the original neuro-radiologist that read my first brain MRI saw, lesions "far and away most likely to be multiple sclerosis". We discussed starting a disease modifying drug, I researched it, and two weeks later I met with a nurse that shows me how to do my Avonex injections.
I'm telling you all this because I wanted to let you know how it feels to be on a DMD. Avonex is a once-a-week intra-muscular injection, and it was easy to get used to doing. I did have flu-like symptoms, mostly aching and extra fatigue, and some chills a couple of times.
This week I'll be giving myself my 12th injections, and the side effects are getting less and less. I take it easy the day after my injection, but am able to do more, and ache less. By the second day, I'm doing pretty well. I've been taking Provigil to help with fatigue. It's expensive, and so far my insurance doesn't cover it, so I use it sparingly.
I know everyone reacts differently to the medications, but I thought I'd tell you my own experience.
My memory issues were really starting to worry me, my fatigue is a constant battle, and flares of nerve pain have been getting worse, my dizziness comes and goes, my bladder issues more troubling. I thought it was time to see if I could try to slow down the progression; slow down the times when my symptoms really worsen and interfere with my life.
I'm trying medications for the nerve pain, my dizziness usually responds to my vestibular physical therapy exercises I learned, and I'm learning to pace myself.
Anyway, I'm sure that your doctor will be glad to discuss your concerns with you, and help you come to the best decision for you. I'm happy that you came here to hang out with us while you go through this; this forum and its great people have helped me so much these past 2+ years.
Kathy
I was diagnosed in October, 2009, after 20 months of looking for answers. My symptoms were relatively mild, never had optic neuritis, most tests came back totally normal, but my brain MRI was full of lesions; 30 to 40 was a guess-estimate.
My fourth neurologist, an MS specialist, looked at that brain MRI and saw what the original neuro-radiologist that read my first brain MRI saw, lesions "far and away most likely to be multiple sclerosis". We discussed starting a disease modifying drug, I researched it, and two weeks later I met with a nurse that shows me how to do my Avonex injections.
I'm telling you all this because I wanted to let you know how it feels to be on a DMD. Avonex is a once-a-week intra-muscular injection, and it was easy to get used to doing. I did have flu-like symptoms, mostly aching and extra fatigue, and some chills a couple of times.
This week I'll be giving myself my 12th injections, and the side effects are getting less and less. I take it easy the day after my injection, but am able to do more, and ache less. By the second day, I'm doing pretty well. I've been taking Provigil to help with fatigue. It's expensive, and so far my insurance doesn't cover it, so I use it sparingly.
I know everyone reacts differently to the medications, but I thought I'd tell you my own experience.
My memory issues were really starting to worry me, my fatigue is a constant battle, and flares of nerve pain have been getting worse, my dizziness comes and goes, my bladder issues more troubling. I thought it was time to see if I could try to slow down the progression; slow down the times when my symptoms really worsen and interfere with my life.
I'm trying medications for the nerve pain, my dizziness usually responds to my vestibular physical therapy exercises I learned, and I'm learning to pace myself.
Anyway, I'm sure that your doctor will be glad to discuss your concerns with you, and help you come to the best decision for you. I'm happy that you came here to hang out with us while you go through this; this forum and its great people have helped me so much these past 2+ years.
Kathy
thanks..am waiting on a call from the office on thursday and will let you know what the dr. decides but based upon the brain MRI alone and the optic neuritis he sounds pretty sure he wants to go ahead and try a disease modifying drug. As far as the fatigue goes I just am not sure about anything anymore...There has only been one episode just as of recent I was so tired and exhausted I couldnt get off the couch and told my husband "somethings wrong w/ me."..but that was the only REALLY significant episode I can remember..and thinking back maybe some heat intolerance..but all these meds seem to cause flu-like symptoms and I am nervous It will affect my ability to get to work...thanks for the comment and will let u know what happens..:)
-Shannon
-Shannon
Hi Cutie and welcome to the community here. Optic neuritis is very often the first sign of MS. There are all sorts of statistics about how often a case of ON is the initial indication that you will later develop MS.
The LP results - the lack of o-bands in your CSF - don't really mean anything one way or another. The LP will often be negative (about 50% of the time) yet the patient will have MS. The LP is a good test as a collaborating piece of evidence for an MS diagnosis, but doesn't realy prove anything. Many MS neurologists are beginning to move away from doing the LP at all because of this.
Fatigue? Yes, that is definitely a common symptom. But that fatigue is different than the *I work 40 hours and have 3 young children* tiredness you must feel. This MS fatigue is an *I can't go any further* type of feeling. It often stops MS patients in their tracks, or will at least compromise our ability to function at a normal pace.
BTW, I am impressed that you can work 40 hours, MS or not, and also juggle three young children. That is no small feat.
There are other things that will cause lesions on the brain. And not all lesions are going to be on areas of the brain that are significant for us to function. There is lots of empty real estate in our brains that can be damaged and never make a difference.
Whether this is MS or not, you are welcome to hang out with us while you wait for answers. Many of our members have been through the diagnostic wringer and can help with your questions, too.
Welcome again!
Lulu
The LP results - the lack of o-bands in your CSF - don't really mean anything one way or another. The LP will often be negative (about 50% of the time) yet the patient will have MS. The LP is a good test as a collaborating piece of evidence for an MS diagnosis, but doesn't realy prove anything. Many MS neurologists are beginning to move away from doing the LP at all because of this.
Fatigue? Yes, that is definitely a common symptom. But that fatigue is different than the *I work 40 hours and have 3 young children* tiredness you must feel. This MS fatigue is an *I can't go any further* type of feeling. It often stops MS patients in their tracks, or will at least compromise our ability to function at a normal pace.
BTW, I am impressed that you can work 40 hours, MS or not, and also juggle three young children. That is no small feat.
There are other things that will cause lesions on the brain. And not all lesions are going to be on areas of the brain that are significant for us to function. There is lots of empty real estate in our brains that can be damaged and never make a difference.
Whether this is MS or not, you are welcome to hang out with us while you wait for answers. Many of our members have been through the diagnostic wringer and can help with your questions, too.
Welcome again!
Lulu
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