when to see a doctor

Beginner's Guide to MS: Do I Have MS? What Does It Take To Get Diagnosed with MS?

Lisa Emrich Health Guide April 01, 2009
  • You know that something is not right and your doctor has referred you to a specialist.  Your next step is to Consult with a Neurologist. The Neurologist   A neurologist is a medical doctor or osteopath who has trained in the diagnosis and treatment of nervous system disorders, including d...

23 Comments
  • Mandy Crest
    Health Guide
    Apr. 03, 2009

    I'm completely exhausted after reading this post and flashing back on my own quest for answers. It's hard to believe that so much is involved in the diagnosis of multiple sclerosis. Is it any wonder that so many of us suffer emotional problems while looking for a diagnosis?

     

    This is one of the best guides I've seen explaining the process and what is to...

    RHMLucky777

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    I'm completely exhausted after reading this post and flashing back on my own quest for answers. It's hard to believe that so much is involved in the diagnosis of multiple sclerosis. Is it any wonder that so many of us suffer emotional problems while looking for a diagnosis?

     

    This is one of the best guides I've seen explaining the process and what is to be expected. It would have been very helpful to me six years ago, when I was caught up in a swirl of strange tests and little information to explain what I was experiencing or what doctors were looking for.

     

    This article is a must read for anyone suspecting MS, as well as the people who love them.

     

     

    • Lisa Emrich
      Health Guide
      Apr. 05, 2009

      Thank you for the kudos Mandy.  I hope that this information will be helpful to the many folks who are in the diagnosis process or who wonder just how it gets done.

       

      My final diagnosis (5 years post- case of Optic Neuritis "without evidence of demyelination") involved:

      * Discussing symptoms with PCP in May and then increased symptoms in June

      * MRI...

      RHMLucky777

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      Thank you for the kudos Mandy.  I hope that this information will be helpful to the many folks who are in the diagnosis process or who wonder just how it gets done.

       

      My final diagnosis (5 years post- case of Optic Neuritis "without evidence of demyelination") involved:

      * Discussing symptoms with PCP in May and then increased symptoms in June

      * MRI of cervical spine w/o constrast ordered by PCP in June

      * Referred to neurologist by PCP in June (the day after my MRI)

      * Extensive bloodwork ordered by neurologist in July (first available neuro)

      * MRIs of brain and cervical spine w/ and w/o contrast in July

      * Evoked Potential Tests (visual, somatosensory, brainstem auditory) in July

      * Lumbar Puncture in August (after which I underwent 5-days Solumedrol)

      * Repeat MRIs of brain and cervical spine w/ and w/o contrast in late September

      * Official diagnosis in October

  • Jen
    Jen
    Jan. 21, 2013

    Hi Lisa,

    Thank you for the information on getting diagnosed. I have GPs that tell me they highly suspect that I have MS - but I cannot get much from Neurologists. I present them with problems for diagnosis:
    1. I cannot get an MRI - due to pacemaker (and I checked with my Cardiologist who says that the MRI safe pacemakers that came out recently still would do...

    RHMLucky777

    Read More

    Hi Lisa,

    Thank you for the information on getting diagnosed. I have GPs that tell me they highly suspect that I have MS - but I cannot get much from Neurologists. I present them with problems for diagnosis:
    1. I cannot get an MRI - due to pacemaker (and I checked with my Cardiologist who says that the MRI safe pacemakers that came out recently still would do me no good as the Leads I have inserted into the heart are not MRI safe either and they can't replace those unless it was a life-threatening emergency)
    2. I cannot get a lumbar puncture (I have really low platelets). However they have tested me for everything under the sun and have ruled out other things.
    I have had loss of speech/trouble speaking, swallowing, issues with head tremors. It gets worse in the heat. That doesn't even begin to describe a lot of other things. All of this started happening  a little over a year ago (once I turned 30), Funny thing is, with all this going on, I still "look healthy". Well...yeah. I have even bought myself a cane and bring it out on occasions when my foot drags or I can't balance. Obviously this is really hard when I have two little ones (age 2 and 5). I don't know what to tell people since they are asking me "So, what do you have? I can't tell them anything because I have been told by the neurologist that I will never be able to get diagnosed due to lack of being able to test me further. (They did do an EEG for the tremors which showed up abnormal results but not "epilepsy" they emphasized). But I have had at least one relapse about 8 months after my first "episode". So... I have a hard time taking the drugs (they give to other MS patients) because I think "well, why take drugs if I don't know what I have?" 
    IS there any EXCEPTION to the rule of being diagnosed with something despite lack of MRI and Lumbar puncture? It took a long time but I actually do have doctors that feel very strongly that something is wrong with me but "can't tell me what it is" except all my GPs (at my clinic) want to scream MS everytime they see me. 

    • Lisa Emrich
      Health Guide
      Jan. 21, 2013

      Hi Jen,

      I'm sorry to hear that you are having such a difficult time without receiving a diagnosis.  My first word of advice is to consult with a neurologist who is an MS specialist.  You can find MS clinics here - http://mscare.org/cmsc/index.php?option=com_center_directory&Itemid=1379 - but also call your local chapter of the National MS Society...

      RHMLucky777

      Read More

      Hi Jen,

      I'm sorry to hear that you are having such a difficult time without receiving a diagnosis.  My first word of advice is to consult with a neurologist who is an MS specialist.  You can find MS clinics here - http://mscare.org/cmsc/index.php?option=com_center_directory&Itemid=1379 - but also call your local chapter of the National MS Society for names of doctors in your area.

       

      The diagnosis of MS is a clinical one, based on what can be observed by the physician.  The diagnostic testing has evolved over many years to make diagnosis quicker.  Results from these tests (MRI, lumbar puncture, evoked potentials, etc) can help to indicate abnormalities in the central nervous system.  Have you undergone Evoked Potential testing?  It is different than EEG testing.

       

      It's got to be frustrating to have obvious things going on but not have an official name for what's going on.  If you are being offered MS disease-modifying drugs, then perhaps your neurologist believes that you have a Clinically Isolated Syndrome (CSI) which is a singular attack of MS-like symptoms that may later develop into MS.  The MS drugs can help to delay that occurrence.

       

      Please take care of yourself and those children.  Keep your doctors informed as to what is going on with you.  If you begin to develop new or worsening symptoms which last for more than one day, call your neurologist immediately.  Perhaps another documented attack is all that is needed for a definite diagnosis in your case (I don't know).

       

      Don't give up.

      Lisa

       

       

       

    • Jen
      Jen
      Jan. 22, 2013

      I really do hope it's isolated. They never explained to me that situation but they did (in the beginning) say "this could all just go away and never happen again" without explaining the situation - and because what I went through at the beginning (the first few ER rooms/specialists telling me it is all in my head and to see a psychologist without actually testing...

      RHMLucky777

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      I really do hope it's isolated. They never explained to me that situation but they did (in the beginning) say "this could all just go away and never happen again" without explaining the situation - and because what I went through at the beginning (the first few ER rooms/specialists telling me it is all in my head and to see a psychologist without actually testing me for anything except for STDs - one doctor told me I was just "a bored stay-at-home housewife and I needed to go to work and leave my children to be raised by someone else" (although, I later realized she was suspecting I was some sort of alcoholic who was bored or something). So when I actually found doctors that believed me - I may have misinterpreted the "This could all go away by itself" comment as "They don't believe me either". But when you explained that CSI possibility - that does explain a lot of different things that has been said or offered to me since then. At the main time of the first situation - I had difficulty with understanding people when they spoke too fast and was getting confused a lot so they may have actually said more than that and I just didn't take it all in. 
      I have had relapsing symptoms - but have not bothered to report it thinking "They don't believe me so I am going to not waste my money further by telling them more and not getting any answers".
      I am (a U.S citizen) living in Australia at the moment, and am seeing the top MS specialist - but I actually know people who have the same doctor and ARE ACTUALY diagnosed with MS - and they say that they are frustrated too because even though they are diagnosed, they don't get any answers to their questions and are searching for other doctors. I am getting strong suggestions to see another MS specialist in another City, and will have to plan a trip (I have to hop on a plane) but that is a lot of effort for a doctor who may or may not answer my questions.
      Oh well... in the mean time I can at least hope it was a CSI (Positive thinking helps right??) and with my current symptoms - if they get intolerable your information does help me to push my case that I can be diagnosed through clinical observation (which is what I thought was possible too). Thank you so much for answering promptly and it does help me sort out a few things that did not make sense to me (I used to have such a accurate memory that could remember beyond normal skills and now I can't remember who I talked to or what the conversation was about most of the time - to see it in writing really helps)  

  • Anonymous
    mrsmaddog414
    Jun. 01, 2011

    Almost one year ago, while riding in the car I experienced a HORRIBLE headache. The headache lasted for a few weeks. During that time I had an MRI - they said it was fine. In the last 4 months I've started having numbness/tingling in my arms/legs. I went back to my doctor and during the exam he asked other questions which I told him, yes I get muscle spasms,...

    RHMLucky777

    Read More

    Almost one year ago, while riding in the car I experienced a HORRIBLE headache. The headache lasted for a few weeks. During that time I had an MRI - they said it was fine. In the last 4 months I've started having numbness/tingling in my arms/legs. I went back to my doctor and during the exam he asked other questions which I told him, yes I get muscle spasms, still get headaches, I get these electric shocks at random and I have trouble remembering words or even how to spell something as simple as allow! He looked back at my MRI report from last year and said it there were "some changes" that showed up on it. He said he ws concerned about MS. He did tons of bloodwork (all came back normal) then did an MRI of my head, neck, and lower back. They called me yesterday and said "the MRIs did not show any definitive answer." so they are referring me to a Neurologist. Normally they tell you everything looks good or fine with something like that. So I'm just wondering if they aren't sure and it could still be that or if I'm good. My appointment is in about 2 weeks and I'm trying to prepare for it. I've been dealing with this for about a year (which isn't long compared to some) I do have some balance issues; and I get very fatigued very easily. Any advice or suggestions would be appreciated.

    • Lisa Emrich
      Health Guide
      Jun. 02, 2011

      Hi mrsmaddog,

       

      If I understand correctly, you are being referred to a neurologist based on your clinical symptoms and the result of your MRIs.  A neurologist is better equipped to make a determination of MS or other neurological disease than a general practitioner.  It's good that you are seeing a neurologist soon.

       

      Have you obtained a...

      RHMLucky777

      Read More

      Hi mrsmaddog,

       

      If I understand correctly, you are being referred to a neurologist based on your clinical symptoms and the result of your MRIs.  A neurologist is better equipped to make a determination of MS or other neurological disease than a general practitioner.  It's good that you are seeing a neurologist soon.

       

      Have you obtained a copy of the radiologist's report from your past and current MRIs?  If not, you should get that from whomever conducted the MRI or from your doctor.  You can learn a great deal from the radiologist's report.  However, MS is not diagnosed on MRI alone.

       

      If you do not have them in hand already, you should make sure that you bring the images from your MRI scans.  Usually the MRI facility will produce a CD which you can take with you (and which becomes yours to keep).  It would be a mistake to not have that information with you (including the radiologist's report) when you see the neurologist in two weeks.

       

      Don't be surprised if the neurologist wants you to undergo additional testing.  That would be very much normal.  He/she may also suggest that you get another set of MRIs at a later date to compare to the current ones.

       

      Basically, be prepared but do not fret too much right now about what may or may not be MS.  Please come back and let us know how the appointments goes.  And if you have additional questions, please feel free to ask.

    • Anonymous
      mrsmaddog414
      Jun. 02, 2011

      Thanks Lisa,

      I believe that is what I understood as well. It was just the nurse that called me and said that there was nothing "definitive" shown on the MRI but my dr wanted to send me on to a neurologist. I did ask if they would send him copies of all the MRIs and she said they would. It is in the same hospital organization so they will have access to them,...

      RHMLucky777

      Read More

      Thanks Lisa,

      I believe that is what I understood as well. It was just the nurse that called me and said that there was nothing "definitive" shown on the MRI but my dr wanted to send me on to a neurologist. I did ask if they would send him copies of all the MRIs and she said they would. It is in the same hospital organization so they will have access to them, but I'm going to double check before the appointment to make sure they have the one from 2010 and the ones from last week.

      Thanks to your well written article it gives me an idea of what I might can expect at and after my appointment with the neurologist.

      Thanks again for sharing your knowledge with those of us who are clueless and searching for answers.Smile

    • mrsmaddog414
      Jun. 15, 2011

      Hi Lisa,

      Went for my appt on Tuesday. Still working on finding an Answer. He says he wants to rule for or against MS first. He wants to do MRI's w/ dye this time and he ordered extensive blood work testing for all kind of things. I go back next Thursday to see what the results are and he said from there we'll see if we have an answer and he'll decide whether...

      RHMLucky777

      Read More

      Hi Lisa,

      Went for my appt on Tuesday. Still working on finding an Answer. He says he wants to rule for or against MS first. He wants to do MRI's w/ dye this time and he ordered extensive blood work testing for all kind of things. I go back next Thursday to see what the results are and he said from there we'll see if we have an answer and he'll decide whether to proceed with additional testing (such as spinal tap). Praying we are finally on the right track to whatever is going on!

      Thanks for the support and advice; because of this I was prepared when he said "more testing."

      ~mrsmaddog414

    • Nancy
      Nov. 07, 2011

      Be sure to have them check for you vitamin B's levels.

  • Cathy
    Health Guide
    Jun. 01, 2011

    Lisa,

     

    I remember reading somewhere that you accidentally discovered you really could write well without ever having any training for it.  Well, you go girl!  What an informative article, even for an old "pro" like me(not really!) at having MS.  You are a superb writer who can expalin difficult information in easy-to-understand language....

    RHMLucky777

    Read More

    Lisa,

     

    I remember reading somewhere that you accidentally discovered you really could write well without ever having any training for it.  Well, you go girl!  What an informative article, even for an old "pro" like me(not really!) at having MS.  You are a superb writer who can expalin difficult information in easy-to-understand language. Marvelous job.  Very impressive.

    • Lisa Emrich
      Health Guide
      Jun. 02, 2011

      Aww shucks, Cathy, thank you very much!!

    • Cathy
      Health Guide
      Jun. 02, 2011

       

      Wink

  • Anonymous
    gabii
    Dec. 09, 2010

    im 21 i have really bad headache nothing i take works it lasts for days they are really bad i get naussa, fell really weak, tired my leg,arms get numb.. i feel like every time i get checked for something theres nothing wrong with me. is this something serious that i sould get checked?

    • Lisa Emrich
      Health Guide
      Dec. 09, 2010

      Hi gabii,

       

      It's impossible to know if you have something serious going on.  But it is always important to take symptoms seriously.  Try to be very clear when you talk to your doctor about what's going on with you.  Finding an accurate diagnosis can be a frustrating journey and may take some time.

    • Nancy
      Nov. 07, 2011

      It's a simple idea but please be aware of how much water you have been taking in just before you headache starts. Pushing water during a headache wont hurt but it sure can help. I was having bad ones put on self injections for them then a light went off in my head about water I started to really be aware of my intake it no more shots. I do get headaches a lot...

      RHMLucky777

      Read More

      It's a simple idea but please be aware of how much water you have been taking in just before you headache starts. Pushing water during a headache wont hurt but it sure can help. I was having bad ones put on self injections for them then a light went off in my head about water I started to really be aware of my intake it no more shots. I do get headaches a lot but have several reasons for them but none that are that painful again. I have told several friends and family members to help them an sure enough it helps.

    • Anonymous
      Anonymous
      Nov. 07, 2011

      I do drink lots of water thruogh out the day still that doesnt help with my headaches. I've also tried diffrent types of headache pills but none seem to work for me :(

       

  • Anonymous
    mandims81
    Jun. 06, 2010

    nothing worse i know ive been suffering since january and they still think im crazy they put me on antidressants and are sending me back for more test this month i just wish tjey could be nicer rather than acting like theres nothing wrong with me this is doctore number 4 he finally said im not crazy there is something really wrong with me i was hospitalized...

    RHMLucky777

    Read More

    nothing worse i know ive been suffering since january and they still think im crazy they put me on antidressants and are sending me back for more test this month i just wish tjey could be nicer rather than acting like theres nothing wrong with me this is doctore number 4 he finally said im not crazy there is something really wrong with me i was hospitalized with optic nouritis for a week in january and ever since they have pushed me off like im a burdon even almost having me commited inm feb when i had a reaction to the steruods they put me on , i know your pain i suffer daily , and so does my familly and 4 kids we just want to know whats wrong with me , thats it just a name ,

    • Lisa Emrich
      Health Guide
      Jun. 06, 2010

      Hi Mandi,

       

      Welcome to MS Central.  I'm sorry that you are going through such a difficult time right now in the process of being diagnosed.  It can sometimes take quite awhile to get a definite diagnosis. 

       

      It is possible that the doctors have not been pushing you off but merely waiting for enough time to go by before doing more testing. ...

      RHMLucky777

      Read More

      Hi Mandi,

       

      Welcome to MS Central.  I'm sorry that you are going through such a difficult time right now in the process of being diagnosed.  It can sometimes take quite awhile to get a definite diagnosis. 

       

      It is possible that the doctors have not been pushing you off but merely waiting for enough time to go by before doing more testing.  To get a definite MS diagnosis, there must be evidence of new demyelination in a new location which developed at a different time.  That requires time to pass.

       

      Some people do have serious reactions to the IV steroids and if the reaction was severe enough, and psychological in nature, then sending you for specialized treatment is a very thoughtful and responsible thing for the doctors to do.  I have a friend who became suicidal during her first experience with IV steroids and she was indeed committed for a short period of time.

       

      In my personal experience, having a neurologist who understands the use of antidepressants in patients who have MS has been extremely helpful.  I take antidepressant medication as do several other friends I have who have MS.  It is more common than it likely talked about.

       

      I hope that the testing goes smoothly for you and that a definite answer can be found soon.  Knowing how frustrating it is to go without the definite diagnosis for any period of time, I understand your feelings.  Being in limbo is not a pleasant place to be. 

       

      If you need a place to talk about this process, please feel free to reach out and write here more.  There are many individuals here who have been right where you are right now.  Hang in there.

    • tara1979
      Dec. 05, 2010

      My name is Tara and I am 31yrs old. I know the feeling all too well!!! In 2006 I lost most of my vision in my left eye. I have still yet to know why. I have developed other symtoms as well. I get dizzy alot, muscal spasms, my left arm has started to go numb and tingles and feels weak, get tired alot for not reason and have tremors my hands are worse than the...

      RHMLucky777

      Read More

      My name is Tara and I am 31yrs old. I know the feeling all too well!!! In 2006 I lost most of my vision in my left eye. I have still yet to know why. I have developed other symtoms as well. I get dizzy alot, muscal spasms, my left arm has started to go numb and tingles and feels weak, get tired alot for not reason and have tremors my hands are worse than the rest of my body. I have been told different things that are suposed to be wrong with me but not a deffinate answer. First was an eye stroke and now migraines. I don't believe either one is right. To top it off my mother was diagnosed with MS 3yrs ago. The thing that makes me upset I've tried to get tested for it but the doctors just blow me off. Plus my problems are so bad I can't work.

  • Anonymous
    Diane J Standiford
    Apr. 05, 2009

    Lisa, your site and blog are wonderful places for anyone with, or wondering if they have, MS. I have no doubt you have helped hundreds of people with expert facts and true stories. I was DX in minutes, then again w/MRI within a week. I was one of the "lucky" ones.

    • Lisa Emrich
      Health Guide
      Apr. 05, 2009

      Thank you so much for your kind words Diane.  They really do mean a great deal to me.  I hope that many current and possible MS patients find useful information at either location.  Smile

       

      Wow, you were diagnosed so quickly.  It amazes me when folks are able to obtain a diagnosis in under a month.  That just seems almost unreal as...

      RHMLucky777

      Read More

      Thank you so much for your kind words Diane.  They really do mean a great deal to me.  I hope that many current and possible MS patients find useful information at either location.  Smile

       

      Wow, you were diagnosed so quickly.  It amazes me when folks are able to obtain a diagnosis in under a month.  That just seems almost unreal as compared to my own experience.  But we each have a unique experience.  Glad that you were one of the "lucky ones."

       

      Hope things are going well for you and yours.  Have a great week.

    • Anonymous
      Diane J Standiford
      Apr. 05, 2009

      I have never known in real life anyone who took more than an MRI to get a DX, very fast. I've certainly read about many.