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A woman searching the unknown with a flashlight in hand and a maze outline behind her.

The Relief of Diagnosis

Being diagnosed with an incurable, chronic illness such as Multiple Sclerosis is never a pleasant experience. However, for many people, getting that final confirmation creates an extreme sense of relief. That sounds pretty peculiar to many people, as getting a diagnosis of Multiple Sclerosis is not an easy process. With no single test to determine the presence of the disease, symptoms that can mimic other illnesses, and doctors that may not be well qualified enough, the road to an MS diagnosis can be a long and uncertain one. After a long journey like that, finally understanding what is wrong with you can bring about a sense of calm and peace, despite what the future may hold.

A rough road

Being diagnosed with MS is actually pretty tough. With no black and white test that can confirm the condition, doctors are left to use a combination of MRIs, spinal taps, evoked potentials, and their own experience (which can be severely lacking or outdated). All of that, coupled with the fact that MS symptoms are shared by other neurological conditions, make getting an official diagnosis difficult. It is not unheard of for the process of getting the correct diagnosis to take years. It often takes multiple doctors and exams over a long period of time, that can often include numerous misdiagnoses, before you get on the right track. I think that most people who haven’t experienced the process of getting diagnosed, really don’t understand how difficult it can be (just one reason I love to recommend the movie “Brain on Fire”).

Frustration station

It’s hard to explain just how frustrating and hopeless it feels when doctors don’t know what is wrong with you. When I went to my first doctor about my symptoms, he literally excused himself so he could go “look in some books”. I’ll tell you this, that’s not ever something you want to hear a doctor say. Even when I was eventually hospitalized (because I suddenly couldn’t walk, among other symptoms), a team of doctors at the hospital was befuddled by my symptoms (I was eventually put into isolation at one point because they were so unsure). To suddenly not be able to do basic functions, like walk or stand, and to have numbness and weakness throughout my body, and have a team of doctors not be able to definitively tell me what was wrong with me was nothing short of a living nightmare. When faced with such unsurety amongst medical professionals, it’s pretty easy for panic to set in.

Getting a diagnosis is a scary journey

Eventually, they thought it might be Guillain-Barre syndrome, but they weren’t all convinced. Once I left the hospital, I would go on to see several specialists and would eventually get the official diagnosis of Multiple Sclerosis. The worst part of my story is that, after years of talking to others with MS, I’ve learned that my path to diagnosis was actually easier and quicker than a lot of people out there. Getting an MS diagnosis really is a journey, and a scary one at that.

Relief

When it was finally confirmed that I had Multiple Sclerosis, despite growing up and witnessing the worst the disease can do, I felt some relief (which I think made it much easier to tell my family). The unknown is extremely scary. Finally figuring out what is wrong, no matter what it is, allows you to properly process it. It also allows you to actually fight back. While it was easy to think of the negatives (and again, I grew up with MS all around me, so I was well versed in those negatives), I was also able to feel at peace a bit. It’s hard to fight something when you don’t know what you’re fighting. Getting an official diagnosis meant I was finally able to battle this thing, I was finally ready to take on the future. I knew there would be a lot of work and rough times ahead, but I was relieved to know I could finally get on with it. I knew who my enemy was and I was finally able to fight back.

Hope

So, there can be a huge sense of relief in getting the correct diagnosis. My diagnosis was nearly two decades ago; however, it can still be difficult for many people to get the proper diagnosis. Things are improving though: there are more and more doctors who specialize in the disease, and MRIs and other technology have also improved. Just this week, the Academy of Neurology released the results of a study that shows that there are nearly a million people in the United States with MS, more than TWICE the amount that was previously thought. While much of the study deals with estimates, it’s a sure sign that things are moving in the right direction, that much more is known about the disease. A study like that will help people get the correct diagnosis because it will now be more understood that the disease is much more prevalent than previously thought.

Thanks so much for reading!

Devin

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ss46sh
    4 months ago

    Hey Devin
    You did not mention how much time it took for your diagnosis.
    My first symptom occurred in July
    1985. Of course i did not know it was a symptom until finally diagnosed in February of 1986.
    In between i always thought the pain would go away. It wasn’t until November i even asked a doctor about my umbness and tingling in my legs. I was there with my wife for her prenatal appointment. He gave me an Achilles tendon reflex test and told me it was diminished. He then suggested i see a neurologist. After several in office tests he suggested i get an MRI. In 1986 there were few places available for an MRI. My appointment was at 11:30 on a Friday night. The results showed no signs of damage. With apparently no neurological damage i turned to a cardiologist for more testing . By this time i was worried. The MS hug was approaching my upper chest. The cardiologist found no evidence of any disease. My neurologist then scheduled a spinal tap. On February 12th, after eight months of mystery, i received my diagnosis on the phone while home.for lunch. I too felt relief in finally knowing. Over three decades since that day and i am still fighting the good fight. MS strong Just keep fighting

  • Devin Garlit moderator author
    4 months ago

    Thanks @ss46sh, compared to so many people I talk to, my time to get diagnosed was actually pretty quick, I’d say about 7 months from when I was hospitalized. That long, but, my MRIs were all very obvious, as were the results of my spinal tap. I’d also have a grand father and great grandfather who were diagnosed. Even with all that, it still took them a bit to formerly diagnose it, when I thought in my case, it should have been a slam dunk.

  • potter
    4 months ago

    I had MS symptoms since my 20’s but my GP thought I was a hypochondriac and wouldn’t refer me to a neurologist despite my families history of MS. I was so relieved when I was diagnosed at the age of 55. I thought doctors will believe me know when I tell them something is wrong. Boy was I wrong, if I see my GP first she will send me to my neuro. If I see my neuro first he will send me to my GP. Still riding the roller coaster. Potter

  • Devin Garlit moderator author
    4 months ago

    Thanks so much for sharing @potter, sadly, you’re story is all too common!

  • D-bob
    4 months ago

    Then, after you’re finally diagnosed (15 yrs for me), some Dr’s seem to think that any problem you may have is related to you having MS. It’s an easy scapegoat if they can’t think of anything else causing you symptoms.

  • Devin Garlit moderator author
    4 months ago

    Thank you @D-bob, that’s so very true, among both doctors and patients! I’m probably guilty of that myself from time to time.

  • New to me
    4 months ago

    Great article! And so true, after years of one Dr. after another one starts to believe they will never figure out what’s causing your symptoms “is it all in my head”? But the symptoms are so overwhelming at times you know it’s real, being diagnosed is oddly a breath of fresh air! Friends then kind of understand, but unlike a broken arm they still don’t fully get it! Odd how they all assume it’s an immediate death sentence! Telling them you have had it for years doesn’t seem to dispel these believes, some over compensate never asking or letting you help with anything physical.. forge ahead my friends

  • Devin Garlit moderator author
    4 months ago

    Thank you @New to me, appreciate you chiming in!

  • m.Todd
    4 months ago

    One of the issues that keeps popping up is the need other non-MS people have to tell you the history, be it bad or good, of someone they know/knew. It seems that many feel obligated to tell you that bad news. To follow that up, they then assume the role of MS expert, ready the advise you.
    I’ve learned to usually control my anger in those situations (when I really feel like telling them to shut-the-f**k-up!)

  • Devin Garlit moderator author
    4 months ago

    Thank you @mtoddh, I’d say just about anyone with MS would agree with you! It’s something we all have to deal with a lot and it’s incredibly frustrating!

  • Shelby Comito moderator
    4 months ago

    I hear you, @mtoddh, and although I think many of those “experts” have good intentions, it definitely has a patronizing and inconsiderate effect. Thank you so much for sharing here – I think many can relate to your comment! Best, Shelby, MultipleSclerosis.net Team Member

  • LeeAnn
    4 months ago

    Hi Devin you did a great job on this article. It took 15 years for me to finally get diagnosed! Shortly after I was also diagnosed with Fibromyolgia, a double whammy. The relief of finally being diagnosed with MS was beyond words and joy!
    The unknown is very hard to deal with, the knowing is being able to move forward. It was great to be able to take control of my life again.
    So for anyone out there that is dealing with an unknown diagnosis hang in there and be strong it will come. I believe I went to 7 different neurologists in those 15 years. Would I rather not have this disease, Yes, but I’m thankful for not having to deal with anything worse!
    Just remember there’s always someone that is worse off than you.

  • Devin Garlit moderator author
    4 months ago

    Thank you for sharing @LeeAnn, unless you’ve gone through it, I think some people have a hard time understanding that sense of relief!

  • chong61
    4 months ago

    It took a team of docs to confirm my diagnoses and a time of almost 25 years.

    Massive pain in my head and dropping every item my right hand touched. The first words I heard was from a neurologist and he said “you are having numerous mini strokes and showed me 3 lesions in my brain. Fast forward a year and the MRI showed massive amounts of lesions. He then said I don’t think I am capable of treating you, but did not tell me what I needed to be treated for or where to go.

    After another month, my right foot began to drag, trouble sleeping and extreme tiredness. I researched my problems and found a MS center in a major hospital. I called and they sent me 32 pages to fill out and then the team of docs would have a discussion about my papers and they would then decide if I fit the criteria to be a MS patient. I was not allowed to make an appointment until they declared I was accepted and then they began a long siege of different medications, therapy and tests from head to toe, it was determined that I did have MS. My main doctor was a wonderful doc and cared about my condition very much. She finally got a combination of medications that can hold my symptoms at bay at tad, but not get rid of them. She arranged 3 day infusions of methylprednisolone several times but I finally stopped those, it kept me totally down too long.

    Three to Four weeks ago, I got a letter that she would no longer be at University of Texas.

    I have lived with pain everyday for over 20 years. But, in my case I was so allergic to all the medications most often used it just was not feasible to continue. I am now on the hunt for a neurologist that even remotely understands MS. Not easy even if you do have massive papers confirming MS. I have chose not to continue with the other docs at UT, but find someone closer that my kids would not have to rotate driving me.

    Just another day in the circus of MS.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much for sharing some of your story @chong61, it’s so common for people to have gone through exactly what you’ve been through. Hopefully that changes some day.

  • StephNA311
    4 months ago

    To True, it us rough really rough at times, sadly no cure yet. I find myself even in its debilitating side effects constantly comparing one pain to another. And yep, stick and stones do break bones, nerve lesions are incredibly painful, yet words can always hurt more than any of it.

  • Ana Miguel
    4 months ago

    Devin…. I felt like a freak when my doctor confirmed me what I suspected and I just felt…. relieved. I still cried, yeah; but, at that time, I finally knew what was wrong with me. No more suspicion, no more searching the web for answers.
    I just want to say thank you for these words. For spreading the awareness. Keep on 🙂

  • Mascha
    4 months ago

    Great explanation. I have forgotten myself what happened precisely but i do remember i was relieved even though i had bo idea what MS was. I was clueless. Didn’t help that the advice that was given was pretty bad. Basically no advise.
    But yes relief.

  • Devin Garlit moderator author
    4 months ago

    Thanks @Mascha, sometimes just knowing, no matter what it is, can be such a relief!

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