Diagnosing Multiple Sclerosis: Steps to Take if You Suspect MS

Mandy Crest Health Guide June 02, 2008
  • One of the worst times in the life of a multiple sclerosis patient is the pre-diagnosis phase. Symptoms come and go before you manage to see a doctor. You get the feeling that you are not being taken seriously by physicians. You've researched online and self-diagnosed. All you want at this point is t...

14 Comments
  • yanana
    Jun. 21, 2012

    Hi,
    I'm an almost 20-year-old female from Canada and I am scared that I may have MS.

     

    About 6 weeks ago I began to experience a lot of weakness and lack of energy. We attributed this to a change in diet and exercise, however I was doing the same things as I'd done the previous summer, so that didn't make sense to me. That being said, I started eating more...

    RHMLucky777

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    Hi,
    I'm an almost 20-year-old female from Canada and I am scared that I may have MS.

     

    About 6 weeks ago I began to experience a lot of weakness and lack of energy. We attributed this to a change in diet and exercise, however I was doing the same things as I'd done the previous summer, so that didn't make sense to me. That being said, I started eating more in quantity, though still eating healthy food, and exercising less because even 20 minutes of physical activity was making me feel like I was going to pass out. Though ever so slightly over-weight (156 pounds, 5'6") I AM in good shape, and this struck me as weird.

    However, things went downhill from here. While my energy was still low, I first experienced an odd sensation while bathing. Starting in the tips of my toes and spreading up my legs, and in the tips of my fingers and spreading up my arms, were these horrible, painful, stabbing sensations, as though hundreds of people were stabbing me repetitively with needles. I thought this was weird, but had been just out in the cold and thought that perhaps I was just adjusting to warmth. The next night, the same thing happened. And the next night. And the next night, only this time was more painful than ever, and I even felt pulsations in my feet, which were also visible.

     

    I went to the doctor the next day. Took the regular blood tests, etc. My Vitamin B12 was fine. My folate and iron were fine. My thyroid was fine. I tested not to be a celiac, and my red blood cell counts were fine.

    but my Vitamin D was low. Not rock bottom, but fairly low.

    This was about two weeks ago, and since then things have changed, but only slightly. I should note, I sometimes get said pins and needles sensations during the day, but they are never as severe, and didn't last as long. However, they have increased in frequency to as many as four or five times a day, and almost always happen when I am exercising, exposed to heat, or working my muscles hard. The pins and needles while bathing still happen every night, although they are somewhat reduced in intensity, and do not last for the entire time spent bathing.

    I'm a generally clumsy and off-balanced person, so I haven't noticed much change there. But I have dropped things more often. Yesterday I dropped an egg, like my hand just let go of it. Two weeks ago, I kept dropping something in my hand at work, and everytime I'd pick it up, I'd drop it again.

    But those symptoms aren't the killer for me. It's the numbness. The pain. The HEAT-RELATED nature. I can tell I have peripheral neuropathy, but the heat sensation is the missing link, and I can't find anything other than MS that can cause it.

    If anyone is wondering, I may have had vision problems as well. In the fall, I began getting horrible, horrible headaches, and I couldn't figure out why. I also found my eye (one in particular) was sore, and I couldn't wear my contacts a lot of the time. The headaches were unbearable, and I soon discovered that one of my eyes had changed, and everything coming out of it was now blurry. This took place over somewhere between 6 and 10 weeks. I went to the doctor and found that one of my eyes had changed from a -2.0 to a -2.5, while the other remained the same. At the time, we attributed it to random change, but I am wondering now if it may have been the first sign of MS.

    If anyone is reading this, please please let me know if this sounds like something you have experienced. I am scared.

  • Anonymous
    Nana J
    Jul. 05, 2011

    I have had symptoms for years, was diagnosed by one urologist with Interstitial cystitis but another urologists said no it was not. I have seen three neurologists, one infectious disease and two rheumotologist.  I am finally with a neurologist who specializes in MS.  Have vision issues, double vision blurry vision and just an over all funny feeling...

    RHMLucky777

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    I have had symptoms for years, was diagnosed by one urologist with Interstitial cystitis but another urologists said no it was not. I have seen three neurologists, one infectious disease and two rheumotologist.  I am finally with a neurologist who specializes in MS.  Have vision issues, double vision blurry vision and just an over all funny feeling with my vision when I am in the hot weather.  Have burning in my feet most often than not. Weak, fatigue, dizzy, unsteady gait, can't stand alone without leaning on something for a long period of time, noise in my ears 24/7, pain different area in my head especially on right side, tingling arms, hands feet.  nerve pain throughout body, lower spine pain, difficulty swallowing, cough, acid reflux with aspiration (pneumonia twice) bladder, bowel issues (spasms).  I have two lesions on my brain-one of them on the brain stem but no new lesions in the past six months.  My last MRI had no changes last week, will have an EMG and a nerve conduction study in two weeks.  I am at the end of my rope, think I am starting to get depressed. My dr is very attentive and says now we are going to get busy and find out what is going on as we have been waiting to do MRI about every 5-6 months.  Does this sound normal treatmetn and does it sound like MS to you.  I am convienced it is MS and with God's help I will do whatever is necessary but I just want to be diagnosed and get the treatmetn to slow the progression. 

  • Anonymous
    nick
    Mar. 12, 2010

    "frankly you don't want any new members."  to your group.  What is that.  That might have been left out of the last part.  You talk about being able to help but then say you don't want to?  Yeah, I think I'll move on to someone that seems more eager to help a person in need.  Thanks for the useful info, but that last...

    RHMLucky777

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    "frankly you don't want any new members."  to your group.  What is that.  That might have been left out of the last part.  You talk about being able to help but then say you don't want to?  Yeah, I think I'll move on to someone that seems more eager to help a person in need.  Thanks for the useful info, but that last paragraph was disappointing, discouraging and honestly scary to a person who has or may have M.S..  Perhaps simply not mentioning the group or being involved in your group would have sufficed.  Or maybe just stating that you would do your best to help any person in need.  Honestly, I'm quite disappointed at the way you post ended and has now discouraged me more that what I already am. 

     

    Thank you

    • Lisa Emrich
      Health Guide
      Mar. 12, 2010

      Nick,

       

      First off, welcome to MS HealthCentral.  We really are a supportive community for folks who live with MS, care for someone with MS, in the process of getting diagnosed with MS, or simply in limbo without answers.

       

      What Mandy was meaning is that we would never wish that someone has MS, often becoming somewhat sad when another person is...

      RHMLucky777

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      Nick,

       

      First off, welcome to MS HealthCentral.  We really are a supportive community for folks who live with MS, care for someone with MS, in the process of getting diagnosed with MS, or simply in limbo without answers.

       

      What Mandy was meaning is that we would never wish that someone has MS, often becoming somewhat sad when another person is dx with MS.  But we certainly understand and offer support to folks who have varying experiences.

       

      Mandy writes elsewhere now, but we have many community members who would welcome you to share your own story, questions, fears, etc in a Sharepost.  Under the blue drop-down button near the top of the page which says "Connect" you can select "Create a Sharepost."  That is the best way to interact on this website.

       

      I hope that you will share your story and maybe we can help.

       

      Lisa

  • Anonymous
    angiemanter
    Jan. 25, 2010

    Since May 2009, I have been having issues.  I was told I had pressure on my optic nerves, suffered headaches, vertigo, numbness, hypertension.  Was hospitalized for two weeks and was told I had pressure on my brain.  had two spinal taps.  Since I have seen so many doctors and been given so many drugs.  My symptoms or episodes keep coming...

    RHMLucky777

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    Since May 2009, I have been having issues.  I was told I had pressure on my optic nerves, suffered headaches, vertigo, numbness, hypertension.  Was hospitalized for two weeks and was told I had pressure on my brain.  had two spinal taps.  Since I have seen so many doctors and been given so many drugs.  My symptoms or episodes keep coming back but this one i am having is the worst yet.  I am so tired and frustrated that I do not think anyone believes me.  I am going to to the ER today and I hope I finally get someone to help me.  I know that what i have been experiencing is not normal.  it is not because I am depressed.  Sure after 8 months i am not the happiest person but i am just anxious and worried.  I am glad I am not alone in experiencing so many obstacles.  I do  not want a diagnosis of MS but I want to be me again.

    • Lisa Emrich
      Health Guide
      Mar. 12, 2010

      Hi Angie,

       

      I'm just now seeing your comment and hope that things are going well for you.  Sounds like you were having a really tough time at the end of January.  How are you feeling now?  Being in limbo without a firm diagnosis can be scary AND frustrating.  Have the doctors given you a diagnosis yet?

       

      Lisa

  • Anonymous
    Whitney Owen
    Dec. 03, 2008

    My mother is in the pre-diagnosis phase right now and it's hard. Her neurologist basically accused her of being clinically depressed and making up all her symptoms (for the last 10 years) and then argued with her when she said she wanted a referral to a specialist. I have seen my mother go into a fast downhill slide in the last two months, and it seems as if...

    RHMLucky777

    Read More

    My mother is in the pre-diagnosis phase right now and it's hard. Her neurologist basically accused her of being clinically depressed and making up all her symptoms (for the last 10 years) and then argued with her when she said she wanted a referral to a specialist. I have seen my mother go into a fast downhill slide in the last two months, and it seems as if no one cares but me; especially not the doctors that are supposed to help her. Any advice? It's going to be 5 weeks before she can get into the specialist and I'm afraid she going to get even worse by then.

    • Mandy Crest
      Health Guide
      Dec. 03, 2008

      I'm so sorry for what you and your mother are experiencing. Unfortunately, MS can be extremely difficult to diagnose, especially if you have the misfortune to have a skeptical doctor. That's why many of us go through several docs before getting the answers we seek.

       

      MRI seems to be one of the best tools for diagnosis because they can clearly show lesions...

      RHMLucky777

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      I'm so sorry for what you and your mother are experiencing. Unfortunately, MS can be extremely difficult to diagnose, especially if you have the misfortune to have a skeptical doctor. That's why many of us go through several docs before getting the answers we seek.

       

      MRI seems to be one of the best tools for diagnosis because they can clearly show lesions in the brain or spine.

       

      Since she already has an appointment with a specialist, I would suggest that you do this:

       

      * keep a daily diary of ALL symptoms, no matter how small or insignificant they seem

      * gather ALL your previous test results, health history, medications, and physican contact info for the specialist

      * prepare a list of questions that you want to ask the specialist so that you don't fail to ask in the heat of the moment

      * DON'T allow yourself to be rushed during your appointment -- be firm in your quest for answers

       

      In the meantime, if any symptom becomes severe, don't hesitate to go to an emergency room. Some symptoms of multiple sclerosis can mimic stroke or other health risks, and you don't want to dismiss the warning signs.

       

      It looks like you're already doing your homework on MS. You might want to familiarize yourself with the various medications available to treat relapsing/remitting MS, as well as medications to treat symptoms.

       

      Lastly, don't assume it IS MS. I don't know all the tests that have previously been run, but there are several other chronic illness which have almost identical symptoms. MS is a diagnosis of elimination. Specialists usually run blood tests that can rule out many other diseases.

       

      Prepare yourself for repetition -- MRI, spinal tap, evoked potentials, and other tests may have to be re-run.

       

      If you do get a diagnosis, you may want to contact the National Multiple Sclerosis Society and look into support groups in your area.

       

      Please come back and let us know how you're doing, either by commenting, or sending me a private message. I know what a difficult time this is for both of you, and I hope to have been of some help.

       

      Kindest Regards,

      Mandy

    • Polly
      Sep. 02, 2010

      Your mother is lucky to have an advocate (you). One thing that I have found very important that people neglect to mention is that you should not go to the doctor by yourself. Ever! Fight for her, because she can not fight for herself, by herself right now. I have been to 3 regular doctors, a neurologist, a rumatologist, and now a specialist. They did an MRI...

      RHMLucky777

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      Your mother is lucky to have an advocate (you). One thing that I have found very important that people neglect to mention is that you should not go to the doctor by yourself. Ever! Fight for her, because she can not fight for herself, by herself right now. I have been to 3 regular doctors, a neurologist, a rumatologist, and now a specialist. They did an MRI a year ago, and lots of blood tests. Tests showed problems, but nothing that was elevated enough for them to care. I am disabled now, but can not get disability because I can not get diagnoised. I am a single mother of three, and can not even take my kids to the park anymore. I can not go for walks, or ride a bike. We couldn't go swimming at all this summer, and could not go to the museum. I can not travel, and I can barely see now. I write everything down and have been doing so since April. I finally got to go see a "specialist" in late July. He said I faked the journal, and would not even look at it. He told me that if I had MS, or anything like it, that I would "walk like Clint Eastwood and I would fall over everytime I tried to turn around." According to this "specialist" people with MS or any kind of illness do not have good days and bad days only really bad days. I never have days when I am symptom free but I do have times when I can tolerate it easier. Not only did this doctor that I saw not diagnosos me, but he took away every diagnosis I did have. After reviewing no information he decided that I don't have Migraines ( that I have had since I was 11 years old ), I do not degenerative disc diesese ( which was diagnosed via MRI ), and I don't have RA ( which was diagnosed through blood tests ). After that meeting with my doctor they tried to commit me into a psychiatric hospital. I went into hiding and almost killed myself out of fear and hopelessness. I didn't because my kids would end up in foster care because we have no other family. I am now terrified to seek treatment even in emergency situations. The counselor I have had since January says I am not crazy. The psyciatrist that I saw yesterday said that I am not depressed or bipolar, but that I am becoming that way from being under constant attack. What I am trying to say is that no matter what Do NOT let your mother face these people alone. Do Not turn your back on her no matter what any of these people tell you. Your mom may even tell you at some point that it's her problem not your's. She loves you. It hurts to see people you love hurting and you will try to protect them from that even if it hurts you. Don't tell her it's not hard on you. Don't worry about me mom. Tell her yeah mom it sucks. It is hard but I love you and I am here. No matter how bad it gets, how hard it gets. You will get stressed. This will wear on you. It is very hard to be the ONE who cares. As hard as it may get for you imagine how hard it is for your mom. It would be nice to have a lot of people who care, but one person can make all the difference in the world. My kids save my life every day.

  • Anonymous
    Anonymous
    Oct. 04, 2008

    Thanks, Mandy
    I am in that pre-diagnosis stage. My family doc has said all along that it looks like MS, but all the tests are coming back clear. Am experiencing my third flare-up in 2 and 1/2 years.

    Everything you said---the waiting....the wondering if you are crazy, etc., is all very frustrating.
    As far as keeping the journal---I have done that, but the neurologist...

    RHMLucky777

    Read More

    Thanks, Mandy
    I am in that pre-diagnosis stage. My family doc has said all along that it looks like MS, but all the tests are coming back clear. Am experiencing my third flare-up in 2 and 1/2 years.

    Everything you said---the waiting....the wondering if you are crazy, etc., is all very frustrating.
    As far as keeping the journal---I have done that, but the neurologist didn't even want to look at it! I wonder why?

    I'll continue to keep it anyway. it has helped during 'remission' to look back and realize that I am not just 'making things up' or remembering symptoms to be worse than they really were!

    • Mandy Crest
      Health Guide
      Oct. 04, 2008

      I'm so sorry that it is taking so long to get to the bottom of things. I'm curious if you have had a second opinion from a neurologist who specializes in MS, or if you have had an MRI.

       

      The only test that ever clearly showed my MS is the MRI. Everything else was clear multiple times. It took a trip to Johns Hopkins Hospital in Baltimore to find a doctor...

      RHMLucky777

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      I'm so sorry that it is taking so long to get to the bottom of things. I'm curious if you have had a second opinion from a neurologist who specializes in MS, or if you have had an MRI.

       

      The only test that ever clearly showed my MS is the MRI. Everything else was clear multiple times. It took a trip to Johns Hopkins Hospital in Baltimore to find a doctor who had experience with MS.

       

      I hope you find some answers soon. Please come back and let us know how you're doing. I wish you all the best.

    • happyhome7
      Oct. 05, 2008

      Thanks for your kind reply. My family doctor ruled out a stroke and diabetes and checked my folic acid and B12 (They were great). I have seen a neurologist who has experience with MS. Have had an EEG, EMG, and MRI. The only thing that showed up was atrophy of the cerebellum. The neurologist didn't even comment on  it, but my family doctor told me that...

      RHMLucky777

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      Thanks for your kind reply. My family doctor ruled out a stroke and diabetes and checked my folic acid and B12 (They were great). I have seen a neurologist who has experience with MS. Have had an EEG, EMG, and MRI. The only thing that showed up was atrophy of the cerebellum. The neurologist didn't even comment on  it, but my family doctor told me that it is just a normal result of aging (I'm 51). Is that true? I have read some things that indicate that it could be a sign of MS---or some other disease.

      Guess at this point I just wait, as I don't have money for all the tests, etc.

      Am wondering, however: What is the average time that MS patients usually have to wait for a definite diagnosis?

    • Mandy Crest
      Health Guide
      Oct. 05, 2008

      I'm curious... were there any actual lesions on the MRI? If not, that's a good sign. Have you had a spinal tap?

       

      I don't know the average length of time for diagnosis, but many people wait years. I was very fortunate that I received a diagnosis after six months. I think it was because my symptoms presented in such a powerful way that doctors paid attention....

      RHMLucky777

      Read More

      I'm curious... were there any actual lesions on the MRI? If not, that's a good sign. Have you had a spinal tap?

       

      I don't know the average length of time for diagnosis, but many people wait years. I was very fortunate that I received a diagnosis after six months. I think it was because my symptoms presented in such a powerful way that doctors paid attention.

       

      I understand about not having money for additional tests. My insurance (individual) makes additional tests something to avoid.

       

      My advice would be to keep checking in with your neurologist often -- especially when symptoms appear.

       

      Keep in touch!

  • sue
    sue
    Jun. 05, 2008

    Thanks Mandy for these great tips.  This is one of those times when writing everything down is so important.  I bet many of our readers will take this to heart and try to keep there symptoms, flare-ups, and other medical/emotional issues documented - even if its in a personal journal. 

     

    Does anyone already do this?  Maybe you use the...

    RHMLucky777

    Read More

    Thanks Mandy for these great tips.  This is one of those times when writing everything down is so important.  I bet many of our readers will take this to heart and try to keep there symptoms, flare-ups, and other medical/emotional issues documented - even if its in a personal journal. 

     

    Does anyone already do this?  Maybe you use the internet to track these issues?  Let us know how you organize your medical information by posting a comment or creating a new sharepost - maybe you 'll ispire a fellow member of the MS community.

     

    All the best, sue