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MiSdiagnosed

I think it’s well known that multiple sclerosis has MANY “mimicking” diseases… such as Lupus, Rheumatoid Arthritis, and many others… I was not diagnosed with any of those prior to getting my diagnosis of MS, but I was however diagnosed with a few other things…

At the beginning I was diagnosed with Stress.. Said I was hyperventilating on the monitors and such… Well yeah I was freaking out, my limbs and face kept going numb… but they didn’t think anything of it… I was just “stressed”. Which, who ISN’T stressed these days? Oh and I just have to say that I LOVED being tested for a stroke each and every time I explained my symptoms…

After being told it was stress for over 6 months… my facial numbness began to increase and I went to see my Primary Care, she diagnosed me with Bells Palsy, and referred me to a general neurologist. While waiting to see the neurologist, my primary care had given me a prescription for oral steroids… I started to feel better after a little while, go figure.

So it’s coming up on a year since I first started noticing the numbness, and I see the neurologist, he doesn’t say much on the evaluation, but sends me off to get an MRI that weekend. So I go on Saturday to get my MRI, Sunday morning I wake up and I’m a walking sober “drunk person”… literally.

That Monday I walked in to his office w/ out an appointment and asked him what was going on … I had been thinking I have a pinched nerve or something… or maybe a tumor? Nope, sits me down and tells me I have MS… but doesn’t elaborate on what it is.

So, once he gave me a packet for a medication to start… (yes I said GAVE me A packet, as in one, I didn’t get to research and choose a medication)… I started on Avonex about a month after I was diagnosed. After receiving the IV steroids, followed by Oral Steroids… I’m doing a little better. (This was in August/September 2010, by the way)…. In October, I can’t see straight and I can barely walk… turns out I’m in a flare… so I get a spinal tap done (lumbar puncture)… If you have had one of those, you know why I cringe with the name.

I was stuck… FIVE times in my neuro’s office to try and get my spinal fluid, and TWO more times in Radiology, before they finally were able to get my spinal fluid… I had asked why he was doing this, if he already confirmed my diagnosis with my MRI’s… he said that he wanted to make sure he didn’t “misdiagnosis” and that there wasn’t anything else going on … Well that’s real reassuring

**I am NOT seeing that neurologist anymore, by the way**

So, the point of that little story of how the beginning of my MS journey began, you can see that I was misdiagnosed with two things, before being diagnosed with MS. I’m wondering if it’s common to misdiagnosis like that… I mean, it’s not like they know the CAUSE of MS… so I’m guessing making a diagnosis on it, is difficult as well.

xoxo

Ashley Ringstaff

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So my question is… Before you were diagnosed with MS, were you misdiagnosed with something else?

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Comments

  • Nick
    6 years ago

    My first definite symptom was double vision. I went into a walk in clinic because I have not had a PCP since I was in high school and that doctor sent me for an MRI. I went back for results and he told me I have MS. Since he was a general doctor he sent me to a neuro and boy was that Neuro mad that the doctor from the clinic diagnosed MS but we did a spinal tap and he looked at the MRI and saw the legions and he confirmed the MS diagnosis. I was never misdiagnosed, as far as I know, but I suspect that I had been having symptoms for years and just blamed it on something else myself and didn’t talk to a doctor about it. Who knows maybe if I had gone earlier I could see out of my right eye, you never know.

  • Laura
    6 years ago

    I was diagnosed with Fibromyalgia years ago. A few years ago I started noticing that I could not remember things, I was loosing my balance and the vision in my left eye was getting really bad. A co worker at one point asked me if I forgot how to do my job. When walking at work I stumbled and they sent me home telling me I could not come back without dr approval. So I saw my primary dr who sent me to a neurologist, among many other specialists. I was given an MRI where the lesions were found and I was diagnosed with MS. I was told that I probably have had MS for a long time. So while he tells me I still have fibro as well, I think i’ve had MS this entire time but not the symptoms that would flag them to do the testing. Also, those that have had a spinal tap, which I have had, you can have a clear spinal tap and still have MS. Mine was clear. I was also sent to an eye specialist who told me I had nerve damage to my left eye due to the ms, and also sent to another dr who ran me through a battery of tests for my mental capacity for memory,ect. I failed them all. I have had IBS for years and years and that was attributed at first to the fibro, but it also is a symptom of ms. Fibro and MS have so many of the same symptoms. So be careful if you are diagnosed with fibro, also asked to be diagnosed for ms. As far as controlling the IBS, I won’t know what to do about that until I have medicare for my disability. I have fibro, MS, copd, extreme anxiety disorder, and two anurisims. So I was approved for disability within 5 months. With no insurance until feb of 2014. Point being, I think I was misdiagnosed with fibro when actually it has been ms this entire time. Either way both cause extreme nerve pain for which I have to take medication for. I’ve not heard of the medication Avonex, nor has my doctor mentioned it. I’m on copaxone after going off rebif because of how sick it makes you for two days. I don’t know how any of you who are still working do it, but there is no way I can work with the extent of damage my MS has done to me personally.

  • Kathy Lacour
    6 years ago

    My optomologist said that I had macular degeneration; second opinion doctor said that I had a retina problem; didn’t stop there and got a third opinion; that doctor sent me to a neurologist that specialized in the treatment of MS. He correctly diagnosed that I had MS.
    Fortunately, because I kept insisting on getting another opinion, the time period from the first system to correct diagnosis was about 2 months, so I was put on beta seron right away. I stayed on beta seron for 13 years before recently going on tecfidera.

  • VC
    6 years ago

    I don’t think you mentioned where you live, but some states offer better MS care than others. But in 2013, someone reporting limb and facial numbness should immediately have an MRI. Although not definitive (sometimes a person will have clinical MS without lesions), lesions on an MRI are a confirmatory diagnosis. So much progress in MS research over the past 20 years has led to much faster diagnosis and better outcomes with disease modification drugs. FYI, I have been on Avonex for 11 years and it has kept my exacerbations to a minimum. In the 1990s it was the gold standard. Other drugs exist, but you should give a drug at least six months before determining it isn’t right for you. Each drug has different side effects so if one is working, don’t change it. I started Avonex in April 2002 and my last really bad exacerbation was that summer (more likely just a continuation of the original exacerbation). Otherwise I have had a very slow progression of certain symptoms and milder exacerbation this past summer. But I work full time and am a doctoral student so you could say I lead a full life. I have some limitations but coping strategies beat disability any day of the week. Good luck. By the way, you can minimize Avonex side effects by taking several doses of ibuprofen in the 24 hours leading up to your shot. I used to have “bad shot” days every week. But ten years later I may have a difficult reaction once every 6-8 weeks…which is a big improvement. Two tips…never take it cold (let it get to room temp) and never forget the ibuprofen. I just started using the Avonex pen which is awesome…cannot even feel the needle! You will be ok…the most important thing about chronic disease self-management is a positive attitude!!!

  • Ashley Ringstaff moderator author
    6 years ago

    I live in Texas… and I had a “typo” … all that happened in 2010…
    But yeah – the physician assistant at my PCP office CANCELLED my scheduled MRI, because I had a CT scan done at the hospital when I went… and she felt I didn’t NEED an MRI done.

    When I went in to the office – and she came in to the room to do an eval before my primary care came in, she was like… and what are you on Avonex for? … hmmm… let’s see… I didn’t know it had MULTIPLE purposes…

    Needless to say I made a BIG complaint about her!

  • sayonara
    6 years ago

    Hi, VC I was diagnosed in April with MS and I am experiencing Bowel Incontinence. Can I ask what are you
    taking for that??

  • VC
    6 years ago

    One more thing…just be very glad you don’t suffer from bowel incontinence. Apparently it is common in middle-aged women with MS…and I developed the problem within the last six months. Now that is a debilitating symptom. But I take a drug that helps to control it…just living one day at a time!

  • dkr55
    6 years ago

    I also cringe at the thought of a spinal tap, but it actually can be important in the diagnosis. I was initially diagnosed with a rare and worse disease called neuromyelitis optica or NMO because of extensive spinal lesions and no brain lesions. A certain test was run on my spinal fluid that showed negative for NMO and switched my diagnosis to MS. It is my understanding that if you are treated for either one and have the other, it can produce bad results. I have a great neurologist that is a leading expert in both diseases, but when I had a new flare and went in for a visit earlier this week, he wants to carefully re-test me, as he thinks I might actually have NMO rather than MS. Diagnosis can get crazy.

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