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    Old 03-05-2013, 06:35 PM   #1
    kimidaisy
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    MS symptoms but normal MRI

    Hi everyone, (pls excuse my English, it's not that fluent

    Here's a little story about me. Ever since I was a teenager I've always experienced frequent numbness and muscle cramps. That's why I've never learned how to swim because I noticed that moving my muscles too often will trigger the cramps. Everytime I bend my right toe, I would get cramps. I've also noticed that I get tired easily. I may look physically fit but I can't run a mile without having cramps in my tummy area (how sad..) I've always been a pessimistic person, get depressed quite often even when I was a kid...

    About 3 years ago, my brother was diagnosed with MS, he has a progressive case of MS, I notice that he always have symptoms (bad tremors, speech problems, difficulty walking, difficulty breathing, muscle weakness etc...), and when he has an excerbation, he can't even walk for days. I've never thought of MS until my brother was diagnosed with it. For many years now, I have bowel problems, urinary frequency.

    In 2010, I noticed that I started having memory problems, I used to have a sharp memory, I used to be able to remember unimportant details, but now I can't recall much. Then I have trouble finding words when speaking. I went to a neurologist and he ordered an MRI of the brain without contrast, and it came back normal. He told me that I'm just stressed out and I'm thinking too much, which is true because I tend to overthink things many times, sometimes I get anxious for silly things..

    However, I noticed that my symptoms worsen over the years. Recently, I get very blurry vision. I went the eye dr, and he didn't find anything. Almost every morning, one of my arms is completely numb. I get extremely tired, always sleepy. I tend to drop things alot, very clumpsy, get dizzy more often now. My muscle twitches everywhere like crazy for the past 8 months. I have that insect bite itch, very annoying, and I'm itchy all the time. If I walk too fast, I run out of breath quickly, I have to stop and breath. I feel like my balance is a little off, I have slight tremors on my hands.

    I recently went to the neuro, and he ordered a bunch of blood work (protein, CRP, TSH, glucose, etc) including Lyme. He also ordered and MRI of the brain and cervical spine without contrast, and everything came back negative. He quickly dismissed me and said that I don't have MS because he said that if I've been having these symptoms for this many yrs, my MRI should be positive by now with or without contrast. He can't order an evoked potentials for me because there's no basis for it (like if my MRI is iffy, then having an EP would further assist in the diagnosis). He said he would not recommend a lumpar puncture either since even ppl with positive MRI have negative LP.

    They have an MS group at the clinic but I can't see them because I have to be diagnosed with MS.

    Is there anyone whos in the same situation as me? Or anyone who have to wait a good # of years before their MRI become positive? My blurry vision and extreme fatigue really bother me...

    pls help...(wow my post is really long...sorry about that

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    Old 03-05-2013, 07:02 PM   #2
    MSJayhawk
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    Re: MS symptoms but normal MRI

    Kimidaisy, Welcome.

    While having a sibling with MS gives a greater chance for you to have MS too, the risk is negligible when you look at the statistics.

    Depression and anxiety are two problems which can cause MS like symptoms to present. You should have lesions if you have had symptoms for as long as you have. Has your vision been checked by a neuro-ophthalmologist? If not, you might want to check with them.

    Perhaps a general medical doctor can order a visual evoked potential (VEP)? The neuro-ophthalmologist can order this test.

    While some of the symptoms you have had would be MS like, not all of them do. There are over 400 diseases (including depression and anxiety) which can mimic MS. At the very least, you should be able to get an answer. If you have anxiety or depression, perhaps you can see a neuro-psychiatrist?

    I do not know where you live or what is available to you in the way of medical resources. I am glad you wrote here
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    Old 03-05-2013, 07:25 PM   #3
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    Re: MS symptoms but normal MRI

    Hi MsJayHawk

    Thank you for the quick reply =) . I live in the US. I haven't seen a neuro-ophthalmologist yet, but I've read online somewhere that some people who have more severe symptoms have negative MRI for many years (10 years). But isnt depression one of MS symptoms?

    I feel that my symptoms collectively describe MS unless I have Lyme and my Lyme tests came back as false negatives. Oh I forgot to mention that I also have muscle pain on my shoulder and legs...and I'm also Vit D deficient (value of 21), but that's a very common problem for many ppl.

    Btw, I noticed that you're MED FREE, can you please tell me more about that? My brother has MS, and taking MS medication has many side effects...I wonder sometimes if taking medication really help him.. Thanks =)

    Last edited by Administrator; 03-05-2013 at 07:58 PM.

     
    Old 03-05-2013, 07:44 PM   #4
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    Re: MS symptoms but normal MRI

    Kimidaisy,

    Approximately 5% of patients with clinically definite MS do not show lesions on MRI, and the absence of demyelination on MRI does not rule out MS. If your neurologists have followed the Revised McDonald Criteria to diagnose you and you have clinical symptoms, you could have MS. It is important to know that many lesions seen on MRI may be in so-called "silent" areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient's clinical signs and symptoms. I hope this helps
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    Old 03-05-2013, 08:31 PM   #5
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    Re: MS symptoms but normal MRI

    Kimidaisy,
    There is a "sticky" at the top of the page which you should read regarding progressive MSers and meds. You mentioned your brother was progressive. There are no DMDs that will do anything for someone who is progressive. I have never had a DMD because I am progressive and I have not had any steroids. I would encourage your brother to read the new guidelines in the "sticky" thread ( http://www.healthboards.com/boards/multiple-sclerosis/940092-new-guidelines-regarding-dmds-progressive-non-relapsing-msers.html ).

    As to your situation, you noted a deficiency of Vitamin D. You need to have your levels corrected and allow 2-3 months to pass after correction to see if any of your problems could be caused by a Vitamin D deficiency because such a deficiency can cause MS like symptoms.

    you are correct that depression is one symptom of MS, BUT not all MS symptoms present in each MSer. Depression can be a sub-set of MS OR a standalone disease. Both are quite real and cannot be dismissed. Proper medical care is needed.

    What you read online regarding severity of MS and lack of a negative MRI is not true, I believe. Since only 5% of MSers may have negative MRIs, not all have severe symptoms. Only 5% of MSers may experience seizures, for example. MS can vary so widely that it is an elusive disease. At one time, for example, in Japan 100% of MSers shared ON (Optic Neuritis) as their initial symptom, but in recent years it has now changed to more "western type" symptoms (non-ON). In addition, like with depression which can be a sub-set of MS, ON can be a sub-set of MS or it can be a standalone disease.

    __________________
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    Last edited by MSJayhawk; 03-05-2013 at 08:57 PM. Reason: add

     
    Old 03-06-2013, 03:39 PM   #6
    kimidaisy
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    Re: MS symptoms but normal MRI

    hi MSJayhawk,

    I have a few questions: Can a regular eye doctor tell if you have optic neuritis when he does a thorough eye exam on you? Bc my last visit to the eye dr (08/2012), he said everything is normal. I wear contact lens, I've been having blurry vision for many years now (getting even more blurry recently to the point it gives me headaches and makes me dizzy), but my presciption stays the same for all these years. I have a slight stigmatism, but dr said that it's so minor that he wouldn't recommend having my contacts adjusted for that. However, I insisted that I wanted to try the contacts adjusted for stigmatism, and they're so uncomfortable so I didn't bother. Even when I wear my glasses, everything is still blurry...One interesting fact about me: I could make my eyes more blurry than it already is, I googled online that some people could actually do that with eyes by controlling their eye muscles. But the blurryness that I experience definitely is not a result of me making my eyes blurry. When I relax my eyes, still blurry =(

    Another question is that the 5% of MSers with "negative" MRIs, how do doctors diagnose pts with MS if there's no solid evidence? they diagnose pts based on their symptoms only? Do neurologists still diagnose pts with MS if their MRI come back negative? (maybe it depends on the neurologists, but would insurance just accept that?)
    The thing that scares me the most about MS is becoming disabled....

    oh, My brother's neuro said that she's gonna prescribe Gelenya to my brother since the Avonex didn't do much for him. It's a new drug and there are so many side effects, I don't know if its a wise idea to take it long term..

    Last edited by kimidaisy; 03-06-2013 at 03:43 PM.

     
    Old 03-06-2013, 04:18 PM   #7
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    Re: MS symptoms but normal MRI

    Kimidaisy,

    If your brother is progressive, the DMDs are useless. The oral DMDs are not too good and have side effects. Please make sure that all the information is read. You need to make sure that your brother's neuro will monitor him properly. If he is progressive, the meds are useless.

    Look online for the Revised McDonald Criteria. You can learn how clinical observations are made.

    What type of eye doctor did you see. An optometrist? An ophthalmologist?
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    Old 03-06-2013, 06:09 PM   #8
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    Re: MS symptoms but normal MRI

    Kimidaisy,
    I hope you dont mind me jumping in here. So much of what you wrote in your post sounds like things you have quoted off the internet. Im not entirely sure where you are getting your information. Please remember, that no two cases of MS are alike- and that not everyone will experience all the same symptoms.

    And, please also remember that the statistics of two people in the same family having MS are extremely low. Anything is possible, but its not likely and the fact that your brother has MS shouldnt be pushing you into thinking you could- or should.

    The McdDnald criteria DOES specify that there must be lesions present in order to get a dx...and therefore, doctors are leary to give that diagnosis, without having all the proper clinical evidence. For some people, it can take years for the lesions to appear.....but please also keep in mind that over 400 diseases present like MS- therefore the actual probability of having it is only 1:400....there are 399 other diseases to rule out. Vitamin D deficiency is actually one of the ones which is quite fixable (although it does take time) and can cause many MS like symptoms. Depending on how long you have been deficient, its quite possible that this is the route of your problem.

    As for DMDs and progressive MS. There are hundreds of studies and clinical trials going on right now. Some people will agree with the article that Jayhawk has on the sticky- which states that DMDs do nothing for progression except waste money....others, such as some of the clinical trials right now are stating that although many of the DMDs are not approved for progressive types of MS, they are being used off label- and showing some promise. Taking any disease modifying drug is a personal decision and one that only the patient should be making. It is true that Gilenya has some serious side effects; however you have to weigh benefit vs. risk with anything...and trying it isnt going to hurt him, as long as he is closely monitored by his physican and has had the proper testing before starting it. I assume he is being seen by an MS specialist. Also remember, that MS is more progressive in men, then women. There are more women with the disease in the US; however it seems that men develop more progressive forms overall.

    A good OPTHAMOLOGIST- not optomotrist, can see Optical Neuritis when they dialiate your eyes. They have to look behind the eye with a special machine in order to see the optic nerve. As long as it is healthy, there is no optical neuritis. The part where you talked about "making your eyes more blurry" is not uncommon. Straining ones eyes, using the eye muscles is something all of us are capable of doing- but you really SHOULDNT be doing it- putting that sort of pressure on your eye muscles can cause other problems.

    im going to throw this out there and I hope you dont think Im judging because Im not. Youre extremely anxious. You have been told this by doctors and your post reflects it. Anxiety ALSO causes MS like symptoms. My suggestion is that you attempt to get that under control either with medication or some sort of therapy with a doctor so that you can see the bigger picture here. Youre throwing alot out there, much of which appears to be from things you read. Nothing on the internet is monitored. Which means there is more outdated information and fallacy than fact......dont believe what you read but instead find a trusted medical professional to work through exactly what is going on. If you arent happy with the answers you recieved recently, you certainly can go for a second or even third opinion. No one should ever doubt what they are being told without searching harder for confirmation.

    Im glad you found us. I hope you feel better soon. But, please, dont look for problems. Try to look for solutions! We are here if you need us. And, welcome to Health Boards.

    Nikki
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    Old 03-07-2013, 03:53 PM   #9
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    Re: MS symptoms but normal MRI

    Thanks for replying guys, I really appreciate it,

    I've been seeing optometrists for eye exams over the years, I'm gonna search for an ophthalmologist for an eye exam soon. For Optic Neuritis, is it a condition/symptom that comes and go? I ask this because I've been having blurry vision for many yrs, I'm not saying that I have ON, but if I do, could ON last THAT long? Do MSers have ON all the time, and how long does it last? Although my brother has MS, his vision is not affected at all, so I can't really ask him much about it.

    I moved to the US from a sunny country where I was exposed to the sun most of the time. I don't get much sun where I live now, I don't drink milk (lactose intolerant) so I guess I've been deficient for many many years now. I'm taking VitD supplements starting this week (6000IU) a day for the first 2 weeks, and then just taper down the units.

    For MSers who aren't as progressive as my brothers, when they don't have excerbations, do they experience any symptoms at all? Or they experience mild symptoms, and when they have replapse, it gets worse?

    Last month my brother had an excerbation, he couldnt walk at all because his legs were too weak and they were in pain. I took him to the hospital and they gave him IV steroids for 3 days, and pregnisone after he was discharged. He regained his strength after that, but today I found out that he couldnt go to work for 2 days bc his legs are so numb he can't walk. Does this mean he's gonna need a wheelchair soon? He doesn't speak english, so I've been taking care of his dr appts, and driving him to the dr. Should I apply life-term disability for him? How do I apply for disability? I'm just so sad for him...

     
    Old 03-07-2013, 04:12 PM   #10
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    Re: MS symptoms but normal MRI

    Kimidaisy,

    Your brother may recover some ability or all of them, but it really is difficult to know.

    An optometrist would not work for you regarding Optic Neuritis (ON). ON can cycle, but there are some with ON who have damage to their eyes which is not recovered. I have had light sensitivity issues plaguing me since 2002 without relief.

    Before you start a Vitamin D regiment, you need to consult a doctor to be sure. Simply taking 6000 iu's per day for 2 weeks may not be safe (my non-medical opinion).

    For disability questions, there is a board for disability on this same site. http://www.healthboards.com/boards/health-insurance-issues/
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    Old 03-07-2013, 05:06 PM   #11
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    Re: MS symptoms but normal MRI

    Kimmydaisy,
    Let me see if I can answer some of your questions. First of all, an optometrist is not a doctor- so they wont be able to dx ON. An Opthamologist IS a medical doctor of the eyes- they have the equiptment to be able to see behind your eyes and tell if the optic nerve is inflammed. Not all MSers have ON, and ON can also be a standalone disease, where the person never gets Optical Neuritis...

    When Optical Neuritis is present, its not usually blurriness. Its usually pain (sometimes severe) behind the eye. Its also characterized by having some peripheral (side vision) loss, and sometimes is accompanied by color vision loss. Sometimes, its not that noticeable. One trick my opthamologist always tries is he shows me a RED Tylenol bottle cap- and has me close my eyes one at a time to see if there is any difference...sure enough, when I have had ON, one eye always sees it as more orange than red. There are also books they can show you, with hidden images in them, when you have ON, you cant see the images...

    You asked 'For MSers who aren't as progressive as my brothers, when they don't have excerbations, do they experience any symptoms at all? Or they experience mild symptoms, and when they have replapse, it gets worse?"
    The answer to that is that in this country, 85% of MSers do not have progressive MS, but relapsing/ remitting MS....which does mean that they have a confirmed diagnosis, but the majority of the time they do not have active symptoms. There have been several threads on this lately, if you want to start reading some older threads.....someone like me, who has Relapsing/Remitting MS, I will always have the onset symptom of numbness in my left hand and fingers. When the attack happened, on my brain, it left permanent nerve damage on my nerve- it will never heal, and therefore my numbness will never go away- but that doesnt mean that Im not in remission. My doctor says "YES I AM" because I have not had any new symptoms in more than a few years. An excaberation is usually described as a new symptom which lasts more than 3 days.....a symptom is exactly that- a new symptom which may crop up and hang around for a day or two - but goes away on its own. Its not uncommon to have a few days of bad fatigue, or bad aches and pains, only to have them disappear as mysteriously as they appeared. That's MS for ya! If I were to have a relapse, Id have to have a brand new symptom, or one which hasn't been present in the past year, and it would have to hang around for more than 3 days...then, it would be worth treating the symptom (if possible).

    Because there isn't allot that can be done for MS- the key is to be on a disease modifying drug, to try to prevent progression. They don't always work, and not every drug works on every person exactly the same. Sometimes, it takes more than one (in my case I've been on 5) different drugs to find what works.. and being on a disease modifying drug doesn't guarantee anything. Consider it insurance. You don't always need it, but its nice to know that its there if you do.....even if a DMD only helps reduce progression by 30%, to me, that's better than by 0% and doing nothing...but its a personal choice. People will say that its a waste of money. I know hundreds of people on DMDs who swear that their drug has kept them from getting new symptoms and new lesions....and I know a few that will say that they have never been on a DMD and they haven't gotten any new symptoms or lesions too....MS is so different for everyone- that's why using a DMD is a very personal choice.

    This is allot of info to throw at you. I hope I havent confused you and that this has helped in some way....

    Nikki
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