Diagnosis maze

This topic contains 37 replies, has 8 voices, and was last updated by  MSBeans 7 years, 8 months ago.

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  • June 22, 2011 at 5:55 pm #6556


    SO glad this initial visit was such a postive one. Even though no one WANTS to be diagnosed with MS, it is comforting in a way to know for sure what you are dealing with. At least then you can get educated about living with the disease and take steps to be as healthy as possible.

    Hang in there! You’re in the home stretch now!

    June 22, 2011 at 7:39 pm #6557


    you can say that again! The thought of having a chronic incurable illness is a hard pill to swallow at first but it could be worse (no tumours, afterall). I’ve poured through so many websites and support groups for MS over the past while, it’s extremely helpful, and I’ve already got a good idea on what route I want to go treatment-wise if it’s that and how I’m going to get around some of the challenges it presents. I’m a bit on the fence still about the whole lupus thing. Some things just don’t fit (ex: no fevers, my temp is always normal unless I have a flu) and MS does seem to fit better than lupus, but I’m starting to wonder if my eczema really is that, or if it’s been lupus rashes all along. Who knows! Whatever it is, it’s not taking me down without a fight :) Thanks to the appointment today I feel like I can really get on with my life even though I didn’t get a diagnosis yet.

    June 22, 2011 at 8:01 pm #6558


    There are a ton of disease they rule out when diagnosing MS, which can include Lupus, Rhumatoid Arthritis, Syphillis, AIDS, and more. There are alot of auto immune disease that have similar symptoms.

    June 24, 2011 at 6:16 am #6559


    Of definitely, the list of diseases that can mimic MS is huge. I seem to be lacking most of the hallmark symptoms for other diseases but who knows, I could just be an unusual case. Either way, at least now I have a doctor that is actually ruling out things. Takes a huge weight off my shoulders and now I can really focus on trying to rehab the left side of my body and getting on with life :)

    July 20, 2011 at 9:55 pm #6560


    Well I got the results today! Lupus was ruled out thankfully, I was diagnosed with trigeminal neuralgia and thankfully have a plan to combat that horrible horrible beast now, and my brain MRI was clear. A new MRI has been ordered for my spine, but the doc is now looking at this being a pretty bad case of fibromyalgia that mimics MS very closely. MS still isn’t entirely ruled out yet, but the fibro explains a lot and I do have a family history of it. Regardless of which condition it is, I will keep on spreading the word about this site, FUMS, and am looking at getting into volunteering with my local MS chapter and possibly working in an MS clinic or with MS patients in home care once I finish nursing school. The MSers I have met have been my biggest support through all of this and all the kindness that has been shown to me will never be forgotten and will be continually repaid any way I can.

    July 26, 2011 at 6:56 pm #6561


    It seems like a lot of you went through quite the ordeal just to get diagnosed! Initially my family doctor had referred me to a neurologist who, when I finally got a chance to see him, just recommended that we watch my symptoms – which at that point was just the odd tingling sensation in my arms so I really hadn’t thought much of it. It wasn’t until a year later that I had my first real bout with MS. I woke up feeling fine – nothing out of the ordinary until my mom noticed my slurred speech. In the following days my symptoms got progressively worse. I first noticed my motor skills were off when I couldn’t type as fast, then I lost most of the strength in my arms, my memory was horrible, and finally my terrible gait. I didn’t even bother trying to get an appointment with my neurologist. I went to my family doctor who told me that I should go straight to the emergency room because he was convinced I had MS and thought that going to the hospital would mean a quicker diagnosis and ultimately treatment. He basically advised me not to mention that MS was a possibility unless they had asked. That night I got a CT scan and a referral for an MRI. I was pretty much officially diagnosed in less than a week. Had I waited for my neurologist… I’d probably still be in limboland!

    July 28, 2011 at 6:11 am #6562


    Wow, that’s really fast Bernehh! An MRI in under a week? Did you get sent to a private MRI clinic? I was told to expect about a 3 month wait just to get a call to set up the appointment for the MRI of my spine :S Unfortunately I’m still not diagnosed with anything besides the trigeminal neuralgia (I’m just coming down from a really bad attack so I apologize for any typos, the meds really make me loopy). Until that second MRI gets done, I’m not being treated for anything at all besides the TN (I had to go to the ER to get put on medication for it, and the medication is rapidly losing its effectiveness). I need to talk to my neurologist about the possibility of a third MRI done with contrast this time. Fibromyalgia can explain a lot, but there are really weird symptoms it can’t explain (I’ve had several attacks that seemed to be the dreaded “ms hug”, and went to the ER the first time it happened because I was worried it was my heart, but my heart and lungs were fine, completely stumped the doctor). It’s so frustrating, it really beats me down sometimes…I’m worrying about being prematurely optimistic. There’s still so many problems going on, it’s just exhausting trying to control all the symptoms on my own, but that’s the only option I have.

    July 28, 2011 at 2:10 pm #6563


    Prisioneroftoday, I was reading your posts about your situation and I wanted to let you know that some people who have MS don’t have lesions on their brain. I am one of them. All the damage I have (which is extensive) is to my spinal cord. When I had my diagnostic MRI in 2007, they had me in the machine for 2 1/2 hours while they did my head and entire spinal cord. I didn’t have contrast-there was no need-the damages was obvious.

    I wanted to tell you this because not having lesions on your brain doesn’t mean you may not have MS. Once you get the spinal cord results, you will likely no for sure whether you’ve got it or not.

    I can’t say that I’ve run into too many people like me, but there are some. I am sure at this point you just want answers and I hope that having the second MRI will help give you a difinitive answer.

    You might try calling the place where you’re getting the MRI and ask to go on a cancellation list. I’ve found that this has worked well for me in terms of getting my MRI MUCH faster. (We’re talking a difference of 2 months, in most cases.) You’d just have to be prepared to drop everything and GO!

    Good luck to you. Hang in there.

    August 9, 2011 at 8:14 am #6564


    Hello again Lelainia,

    the optimistic phase has definitely burned out for me. I’ve been taking a long hard look at my symptoms and doing a lot of reading, and I’m prepared mentally to see lesions in my spine. Fibromyalgia can explain a lot of my muscle problems, fatigue, that sort of thing, but there are things it cannot explain at all (like the “hug”). I’ve been trying to find anything else that could cause these things and I’m at a loss. Thanks to a some people I’ve found through blogging, I’ve come across a lot of spinal only MS and even a case of one person who had symptoms for 10+ years before anything showed up on an MRI :S Apparently spinal lesions are morel likely to cause disability (makes sense, less room in there after all) which kind of scares me.

    I wish I could go on the cancellation list for the MRI but considering classes and having to get a ride out of town from family to get to the test, I wouldn’t be able to drop everything and go. It’s frustrating and I want to know now, but I just have to keep telling myself it’s been years since symptoms started, a few more months won’t matter too much in the long run (might as well focus on doing what I can to keep myself healthy and just enjoy going back to school).

    MS or not, it may be winning the battles with these tests, but it can’t hide forever so in the long run I’m going to win the war.

    August 21, 2011 at 7:38 am #6565



    The last month has been an avalanche of symptoms, emotions, doctors and babies.

    I’d been feeling “fuzzy” and along with some new numbness in my right side, my vision had gone double and blotchy when i looked to my left. I finally decided to go to an optometrist for my vision problems. Seemed like a good idea.

    The optometrist had no idea and that afternoon I was at the opthamologist. He wasn’t sure either and a couple days later I was getting a CT scan. Results came back negative on that (yay no brain tumor).

    I finally got into my family doc and he referred me to a neurologist. MRI, evoked potential – check, check.

    That brings me to this tuesday. I was diagnosed.

    It actually makes sense now that I look back. Even 10 years ago i would drop glasses with my left had, my doctor said it was carpal tunnel syndrome. There must have been more signs as well but it’s not the kind of thing you expect or are looking for. It seems that the more I learn about MS the more obvious the diagnosis seems.

    I’m shocked, confused and all that stuff but I have family that I love, a 2 week old daughter that is more beautiful than I could have imagined. Life will go on and I will get through it. That’s it.

    August 21, 2011 at 3:54 pm #6566


    Hi Morgan1,

    First of all, I am sorry you’ve been drafted to team MS. Alot of people have mixed feeling about their diagnosis-it can difficult to hear you have an incurable, life-altering disease, but at the same time, it can also be a relief to finally understand what’s happening to you and why.

    I can totally relate to the whole carpel tunnel thing. Before and even after I was diagnosed, I was sent for Carpel tunnel testing a number of times because I lost all the feeling in my hands and was dropping things like you were. It was frustrating because each and every time, it was clear I didn’t have carpel. Even after I was diagnosed, I was sent twice more. Let’s just say I DID NOT enjying being zapped-I found it quite painful. (My perception of pain in my hands is way out of whack thanks to the MS.)

    Not too long ago, my MS specialist said something about carple tunnel and I interrupted her and said “Look, it’s the MS, NOT carpel tunnel. I’ve been tested a zillion times for that and I don’t have it!!” It’s like HOUSE saying “It’s not Lupus!” Yeesh!

    Anyway, congratulations on your new baby. I hope that you are getting connected with good MS specialist who can help you stay in the best possible health so you can enjoy your new daughter. It’s alot to handle at once, but with good support in place, you CAN do it!

    November 9, 2011 at 5:38 pm #6567


    Hi All,

    I am 32 and newish to limboland… I have had 2 episodes in the last year 6 mths apart lasting about 3 to 4 weeks each. On the 2nd episode this summer my doctor sent me for a peliminary MRI (took about a month for the appointment). The scan was on Friday and I had the results by Tuesday (because Monday was a holiday). My original thoughts were thank god they found nothing because the results came too fast. I was wrong I have legions now I am waiting for my neurologist appointment (that one took 3 months to get). I’m scared but still hopeful that it is something curable. Trying to stay positive my maternal aunt was diagnosed about 4 years ago and I don’t want to add me to the list. Thank you to this site and the people posting in it, your stories have helped a lot.

    November 9, 2011 at 6:49 pm #6568


    I had notable symptoms for 1 year before things were figured out. I could pass all the neuro exams thus making it more difficult I guess for my doctors. They kept suggesting I had a ruptured disc in my back and thus my first MRI was on my lower to mid spine—and none of the doctors looked at the MRI images just the report. After my MS diagnosis I saw an ortho surgeon about a chronic issue they found in my spine and he said I had lesions on the upper part of my spine in the MRI images (he pointed them out on the images during the consult). I was pretty proactive with my GP regarding second opinions and she did a great job at getting me referrals and booking the first MRI on my brain. So she had a second opinion with a neurologist set up before my MRI test results came back. I had no inclination that it wasn’t a spine structural issue as first indicated (as I had heard all about the fractured vertebrae issue they found for several months)–My diagnosis was a complete unexpected surprise and shock. I was told by the first neurologist I saw that most people live 5+ years before their GP figures out what was going on–he was surprised mine was found within a year of experiencing symptoms.

    My issue now is that my MS neurologist is sending me for an MRI in a few months to check how effective my meds are working. He only is willing to do an MRI of my brain and is not willing to monitor the lesions on my spinal cord. I asked if he could monitor both and he’s not willing to do so at the moment—It makes me want to find someone else who will do a better job at monitoring. I don’t know how easy it is to switch neurologists since I have to stay at the MS clinic to get my medications. This is my dilemma at the moment–divorce or just deal with the guy I was given???

    PS. I always ask the MRI place if I can have a copy of my images even if I have to pay a few bucks to get them (that way they are in my personal file) and I bring them to my appointments for viewing. Its my copy though so I always have a record of the images.

    November 12, 2011 at 2:34 pm #6569


    “I was told by the first neurologist I saw that most people live 5+ years before their GP figures out what was going on”

    Yeah I had symptoms for 7 years before an accident lead to my diagnosis. It makes me wonder why in Canada, the country with the second highest rate of MS in the world doctors are not trained more extensively how to recognize the symptoms of MS?

    When I think of the 7 years my myelin was being distroyed while MS raged unchecked, it makes me angry, especially because I kept going to my GP at the time over and over and saying “Something’s horribly wrong!” when I couldn’t feel my legs. I got “It’s just a pinched nerve. Lose 10 lbs. and you’ll feel better.”

    I wish there was some way we could better educate our doctors.

    November 22, 2011 at 5:33 pm #6570


    Has anyone started treatment BEFORE they received a definite diagnosis? I haven’t had a second episode yet (still waiting for the first – optic neuritis – to clear up), but I have 5-7 lesions in my brain, and am getting the results from my neck MRI in a few days. I’ve had 6 MRI’s since April, mostly on my brain and orbits, but this is the first time they’ve scanned my neck, because they thought they might have seen another lesion on the last brain scan done.

    My neurologist, though, has suggested that I consider starting treatment now, in the hopes of delaying or even avoiding a second attack which would give me the firm diagnosis.

    Is that ever done, do you think? Or, if you could have started treatment early, and maybe had fewer or less severe attacks, would you have considered it? Or should one wait for a firm diagnosis before beginning one of the injectibles?

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