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Relief with Diagnosis

I know it sounds weird… but when I was diagnosed with MS in August 2010, I had a sense of relief wash over me. For one, I didn’t know what MS was when the words were spoken to me but also because I was thinking I had a brain tumor or something.

Relieved it wasn’t worse news

So yeah, I can honestly say that even now that I know what MS is; I am relieved that I wasn’t given WORSE news. Am I alone on this? From what I’ve heard from others that I know that have MS, there was relief as well, especially those who had been going on without any answers, for a very long time. I’ve had funny looks from those who don’t have MS when I say that I was relieved when they ask me how I felt. Of course I went through a state of denial and depression once days passed after I was diagnosed… but I guess that’s “normal” for those who get diagnosed.

How I felt relief

The only way I can explain how I felt relief is to dive deeper and explain exactly what was going on.

So, I was 22 in 2010. My kids were 1 and 4, and I was going to school online to finish up my associates’ degree in Criminal Justice. I had been going to school for a while online, so there wasn’t any big change in my lifestyle… But when I started getting numbness randomly and more frequently… I started to worry, especially when my face/lip started going numb.

Being told it was due to stress

I had been to doctors and ER’s and was told repeatedly that it was due to “stress”… like, they would hook me up to monitors and say I was hyperventilating or something? Well HELLO… things are going numb… of course I’m freaking out! But that didn’t explain why it went numb in the FIRST place.

I had finally spoken to my primary care physician, and she had requested an MRI to be done on me. I’m thinking, “Okay… at least we can figure things out and I’m not getting the SAME response over and over.” Well – I had ended up going to the ER when I was visiting my mom in San Antonio. I went to the ER, and they did the “normal” stroke test and all that. They hooked me up to monitors, did a CT scan, and told me that it was… take a guess… STRESS!!! I just about flipped out on everyone there. They told me to follow up with my primary care physician, so I did.

It’s not stress!

Well, needless to say, I followed up with the PA (Physician’s Assistant)… who then CANCELLED my MRI. Saying there was nothing wrong with me and that I just need to “control” my stress level. (Well… why didn’t I think of that?!?!) When more of my face started to go numb, I made an appointment with my ACTUAL physician and explained what was going on and that it’s not stress! I wasn’t even stressed with school work anymore, because I had completed my Associate’s Degree.

My Physician diagnosed me with Bells Palsy, and gave me a prescription for a Prednisone Taper. Go figure, after taking the steroids for a little bit, the numbness started to subside, but my Physician had FINALLY referred me to a neurologist.

Finally getting answers

I had an MRI done, had a HUGE flare before I had a diagnosis, but finally got some answers. So, as you can imagine… I felt SO MUCH relief when I was given an answer. Of course, I went through all the “normal” stages that follow being diagnosed with an incurable illness, but at that specific moment when I had an answer & that it wasn’t “all in my head”, I felt this huge weight lifted off my shoulders, even if it was a brief moment.

xoxo

Ashley Ringstaff

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Comments

  • Moshe
    2 months ago

    Many years ago, early 1990’s, I was having problems back-packing, ref’ing soccer games, playing softball. My right side was seriously weakened. My right leg was measurable smaller. I am right handed and could not throw a softball. Lots of tests, then an MRI. A neurologist (from Stanford) tells me “you have MS. Make sure your will is up to date. Here is a wheel chair which you will soon need”. My Dad told me”never listen to anyone from Stanford” (he was from USC and UCLA Law School).

    So I didn’t. Got on a vegan diet (via McDougal), took vitamins and minerals (from articles off the internet). Sometimes things were better, sometimes worse. Classic RRMS, but nobody knew about MS in those days. Having an MS diagnosis was not a relief. I told my Dad (he didn’t believe me) and my wife who was upset as she had a friend with Primary Progressive MS doing terribly.

    I kept working (School Psychologist) and told folks my limp was from an old football injury that flavored up now and again. 15 years, then when things were getting hard always, I retired. But then I started on Copaxone which made things much better. Then I got a service dog (we paid all training and maintenance costs). I was mobile again. Then MDs seemed to understand MS much better (I have a neurologist). Even my PCMD and her PA get it.

    My spouse Ann really is great. My service dog and I go everywhere together. Still taking Copaxone. Having an MS diagnosis is fine. Glad to be retired (at 59), now I am 67 and doing OK. Did get TN (Trigeminal Nueralgia, type 2, for people with MS, meds help) and Celiac Disease (very inconvenient to not be able to eat gluten). But I am used to modifications and accommodations. God bless those dealing with MS. Stay strong.

  • Ashley Ringstaff moderator author
    2 months ago

    @moshe
    Thank you for sharing your story and perspective. I couldn’t even imagine what it was like before there was more knowledge on the subject.

    Wishing you all the best,
    Ashley Ringstaff

  • JulesPMH
    5 years ago

    Everyone thinks it’s weird to say it’s a relief to get the diagnosis, but honestly, when you’re dealing with the symptoms that MS throws at you, and you don’t know why, just KNOWING and having the chance to get treatment is nothing short of miraculous – and until you’ve experienced the nightmare of the first exacerbation, I don’t think it’s possible to understand that…

    My husband it the MS sufferer…I am the wife of the MS sufferer, and as any caregiver can attest, AT TIMES, during the initial exacerbation(s), it’s worse to be the caregiver…

    Please understand, I don’t pretend to know what my husband goes through, and I know very well he has the worse end of the deal…but those first three years, when he would suffer from the rare episodes of syncope, and his eyes would roll back in his head, and he would be unaware of his surroundings and be unresponsive, even for a few moments, and I would think he was dying…I’ve never felt so helpless in my entire life.

    We moved from Michigan to Las Vegas in 2005 so that I could take a teaching job, leaving all of our friends and family behind. The following school year, in 2006, my husband, Rob, went back to school part-time to finish his degree to become a teacher, started working full-time at my school as a substitute teacher filling a vacancy teaching Health and Driver’s Ed, and by spring (now 2007) he was acting in the school play and was the assistant JV softball coach. The point? He was active, vital, and healthy…relatively speaking.

    . . . Until one day in April, when he was in his classroom teaching, and then, without warning – he hit the floor. The security monitor rushed to my room, and when she first said it, it didn’t sink in – the words didn’t make sense. When she said it the second time, my heart jumped out of my throat, and my stomach felt like a few sailors had a go at it. I ran faster than I knew I could and he was just waking up when I got there, but he was totally incoherent. I don’t even think he knew I was there, but I wouldn’t let go of his hand…where he fell, it was amazing he didn’t hit his head on the table, but by all reports, he didn’t – he was just talking and – BAM – down he went, right in front of his 7th period. When the paramedics got there, they needed all the space they could get around him, and considering he was behind his desk with a table behind him, there wasn’t much. . . so I crawled under the table so I could still be near him and I stroked his hair while they did their stuff… I thought I was going to lose him and I had never been more terrified in my entire life.

    I had to follow the ambulances to the hospital, and call his family on the way there, to let them know, and make absolutely CERTAIN that there wasn’t any history I hadn’t known about . . . he had suffered several concussions throughout his life, which greatly complicated his eventual MS diagnosis, but there was nothing else to know – and when I finally got to see him, he seemed a lot better. After hours and hours of tests, we were told he was fine . . . official diagnosis – vasovagal syncope (fainting spell) and vertigo (dizziness). Except the dizziness was so severe he was unable to walk upright, and he was in a wheelchair for the next three months.

    Like everyone, he was referred to several specialists, just none that were worth anything. Our favorite that we would LOVE to get in front of a malpractice court – the “top cardiologist” who did my husband’s stress test – when he was unable to complete the test because he got too dizzy to stand (upon exertion – hmm…I’m not a doctor, but to me, this seems medically significant!), he ended the test, called the results inconclusive because he could not reach a sufficient heart rate, then breezed into the room, said, “you are REMARKABLY out of shape for a guy your age! You need to lose weight, quit smoking, and exercise. Have you thought about Weight Watchers?” I looked at him like he was quite possibly the stupidest man I’d ever met, or the cruelest . . . and now reading about fatigue and heat being among the most well-known provocateurs of symptoms, and the fact that he DID quit smoking and LOST 30 lbs, and while 3 months later he was able to walk again, it didn’t change the fact that he was back in a wheel chair a year later. And again, the following year, after we paid a chiropractor $5K for 6 months of physical therapy (for both of us), following which, when his exacerbation was again over, claimed credit for his miracle cure (after keeping him from any other doctors for the full 6 months) and put his testimonial on You-Tube, tossing away his cane, (now on his wall), which he refuses to take down, even now, after his diagnosis, even when he made his condition worse in any number of ways, and even when he should have known better based on his training. He actually BLAMED Rob for his exacerbation the following year, claiming it wouldn’t have happened “had he continued treatment after the initial 6 month period” – but we couldn’t afford to pay him several thousand dollars more, unfortunately…

    It was the following year that he was hospitalized, and a neurologist on staff was called in when we first heard “MS” and just like many of you, laughed it off…no way, he didn’t have “MS”…
    (Now, ummm, what is MS exactly??? No one actually KNOWS until they or someone they know has it or MIGHT have it . . .)

    That’s when the research started and I knew, was absolutely convinced, that it was exactly what he had…HE took a bit more convincing, but by the time year 4 came about, we were just waiting. . . through exacerbations and MRI’s and spinal taps and other tests – hospitalizations and sleep studies and EEG’s, we waited…5+ years, we waited. We waited through – was it 2 or 3 PCP’s – the last of which told me to just leave him on the floor if he fell, even if it WAS all night . . . What? (I was having trouble holding him up, at 5’3” and about 150 to his 6’2” and 290. However, leaving my sick husband lying on the floor for an hour, much less all night, when these doc’s lack of diagnosis meant he would have to go to work in the morning, even if it meant he had to be tied into his chair, made me want to tie THEM to a chair…)

    For those who have never waited on a diagnosis, here’s something to consider: without one, there’s nothing wrong with you…according to the doctor’s, the ER, the insurance companies, your employer, and every organization that decides anything that COULD help you…until you GET that diagnosis, there is no TREATMENT, no sick time, no disability, no FMLA, no handicap permit, no insurance payments for wheel chairs or alternative therapies or treatments . . . and for a long time, no answer to the question, “what’s wrong with you?”

    Sometimes the most frightening words you can utter are, “I don’t know,” and the longer they hang around, the scarier they get.

    There’s a whole other story about March 15th, 2011 – the ideas of March – another day we were hoping for diagnosis, and instead were in a car accident on the way to the appointment, which is when I suffered my neck injury (whiplash) and still suffer chronic pain and cog fog, among other issues, 3 years later. . . now Rob spends more time taking care of me than the other way around, but, for better or worse, I can relate to many of his issues and those of others on the site, in addition to the caregivers.

    Rob was FINALLY diagnosed with relapsing remitting MS May 8th, 2011. He was put on Avonex and he hasn’t been in a wheelchair since. He eventually had to give up the Avonex after a severe flare-up of cognitive and emotional symptoms, but is now on IVig and some other more traditional meds for the other symptoms, and is doing okay. He’s had flare-ups, but no major exacerbations; he’s had some really bad episodes with the appearance of new symptoms, which is ALWAYS scary. . . I try to tell him that we just have to remember, it’s the MS, and even though it’s frightening, we know 95% of the time, it’s just “nerves misfiring” and the more upset he gets, the worse it will be. . .

    Of course, that’s me forcing myself to stay calm for his sake. When he bends over, gets dizzy for a moment (nothing new), but can’t walk for the rest of the night, out of NO WHERE, is it a stroke, or MS??? Well, I do the basic stroke check, and if he passes, I calm him down…meanwhile, my heart is pounding in my chest like Wile E. Coyote misfired a boulder. . .

    But no matter what, if something happened, it’s a lot more effective to go into the ER and say, “My husband has MS with a history of these symptoms. . . “ than the long and convoluted story I just told you, with no answer at the end…and no fear that he’s dying…not for a long, long time.

  • Maggiemay
    5 years ago

    Compared to a lot of you who have posted comments, I am an MS newbie having been officially diagnosed in October, 2012. I was definitely relieved and “happy” to receive my MS diagnosis. It took a year and a half of almost feeling like a hypochondriac with a variety of symptoms to get to that point but finally I had answers for why I was feeling the way I was.

    I had several doctors tell me early on that I did not have MS. It wasn’t until I started with optic neuritis that the ophthalmologist I was seeing sent me to a third neurologist and kept pushing work up for MS. By the time I was seen at the MS Clinic I had done a lot of my own research and had myself diagnosed with MS. When the MS doctor told me it was MS I was fine with it. He even laughed and said he never had a patient handle the diagnosis so well.

    I started IV steroids the day I was officially diagnosed and do weekly Avonex injections. I try not to let MS stand in my way. My life truly has not changed all that much since my diagnosis. I have convinced myself that I am going to be in control of my disease and my let my disease control me!

    Good luck everyone in fighting the fight and keep your heads up. Together we can win the fight and hope for a cure.

  • Ashley Ringstaff moderator author
    5 years ago

    I was similar in some ways with you. I didn’t have any research or knowledge about MS, but I surprised everyone on how ‘well’ I handled my diagnosis.

    I was depressed, after the initial shock/relief of first being told I had MS… but I have two kids (at the time were 1 and 4) who needed and depended on me. So I couldn’t just feel sorry for myself. I had to pick myself up and do something about it.

    I too started off on Avonex… though it didn’t work for me, we later found out… but I didn’t hesitate on getting on medication as soon as possible.

  • Zarrin Madelene P
    5 years ago

    I really thought I had a brain tumor and seeing as I got my undergraduate degree with an extra emphasis in neuroscience, I pushed hard for an MRI just to find any tumors and such. Ironically I made a class presentation on MS because it sounded so scary and it was my choice of what to present. My mom said I presented MS and unexpectedly myself too. To add on to coincidences, my house has always been decorated with blue and my mom makes my Betaseron/Extavia which have been what’s worked for me. Take care and nice to feel that I’m not the only one that assumed the worst at first! We’ll be okay =] PS I’m hoping to get a phd in neuroscience, so I can one day help cure myself and the many others plagued by this unfortunate circumstance. Rest easy.

  • Ashley Ringstaff moderator author
    5 years ago

    Wow! You’re very accomplished! Kudos to you!
    I am no longer in school for my bachelors, due to my cognitive/memory issues… my grades were dropping dramatically. I had started out in honors… w/ almost a 4.0 GPA… then I was going below a 3.0. I didn’t want to make it harder on myself, if one day I could be back to ‘normal’.. whatever that is.

    Good luck to you!

  • MSpics
    5 years ago

    I had a long road, probably like a lot of people, to the diagnosis. I had lots of different symptoms over the course of several years. It was like a spider web, until the strands were connected to the hub of the web, it appeared as so many different diseases, from heart disease to behavioral issues, severe panic attacks, etc. It wasn’t until I tripped over a low parking barrier that was hidden in a snow bank, and suffered from concussion like symptoms for three months that my doctor sent me for a complete battery of tests. I had every heart test imaginable, they all came back negative…that included a fight with my insurance company so that I could get a nuclear stress test that the cardiologist considered the definitive test to rule out heart disease. We won that one…the test was negative….that was a huge relief. At that point, my GP had already suspected MS, and being the thorough doctor that he is, sent me to a neurologist who then did a spinal tap and a series of MRI’s. I’ll never forget that night when he got the results back and called us at home telling us to come in the very next day. He told us the next morning that what I have is RRMS…I had a huge sigh of relief…now I had a name and a face to what I was up against…this I could deal with head on…this was something that had shape, form, substance…not an imaginary figment of our imaginations. MS had been mentioned earlier as I indicated so I did some research to try to understand what MS is, that helped a lot. I was in so much better shape emotionally to deal with the diagnosis then most of the people around me who had visions of unspeakable monsters taking over my brain and body. I’ve been very fortunate that I’m able to do the majority of things that I was able to do before the diagnosis, I take copaxone every single day, vitamin d to correct that imbalance and medication to even out my moods. I’m one of the lucky ones….it really could have been much worse. P.S…I lost two members of my family this year to lung cancer…that’s the yard stick that I measure my own fate against.

  • Ashley Ringstaff moderator author
    5 years ago

    I can agree with your attitude on this. I’m sorry for your loss this year of your family members.
    I kept hearing people tell me, just fight back.. whatever this is… don’t let it drain you and bring you down.

    And I responded, how can I fight against something I have no idea of what it is…
    Now I’m fighting something with a definition, but in a way, I’m fighting myself…

  • Barbara
    5 years ago

    I was diagnosed 20 years ago. I was lucky and knew in a matter of months. Having double vision was my first real symptom, after that fatigue, balance and some cognitive issues soon followed. I have had these since then. I am so lucky, I am ambulatory. One of my friends has died from MS related causes. So I am glad I started treatment within years of my diagnoses. I was lucky I live when there are treatments. Even so, what might happen in the future always looms over my head. That is MS.

  • Ashley Ringstaff moderator author
    5 years ago

    True – no one knows what the future holds. Whether you have MS, or are completely healthy.

    I’m also glad that we had the option of treatments to try and ‘slow’ progression, where as those diagnosed earlier on, were just diagnosed with no treatment options available… or when they determined an MS diagnosis by putting them in a hot tub! (If their body reacted negatively to the heat, they had MS…. or so I’ve read.)

  • Lamarfreed
    5 years ago

    Given the dramatic symptoms I had it was either MS or an inoperable tumor. So when I was given prednisone and told that if it was a tumor the symptoms would be gone the next day and if it was MS, it would gradually improve over a week, you can imagine how I relieved I was when I still has symptoms for a week.

  • Ashley Ringstaff moderator author
    5 years ago

    Oh wow – I don’t know how I would of reacted to someone telling me that. Sometimes, I wish people had a ‘censor’ on their statements!

  • asapcynthia
    2 months ago

    That happened to me. I saw my pcp because of a limp. I had an mri of the lumbar spine which saw nothing. I went back and we discussed what it could be, he

  • Josh
    5 years ago

    That is a lot like what I felt when the diagnosis was first made. I finally had a name to go with all of the ‘odd’ things that were happening to me.

  • Ashley Ringstaff moderator author
    5 years ago

    Yeah – instead of being told… “Oh, it’s just all in your head…”
    Well, I don’t think that when people told me that, it would be come a literal statement.

  • Lisa Quick
    5 years ago

    I am 38 years into this crappy disease, I wish I had listened to the words of the late Dr. Roy Swank in my youth! His MS patients who changed their diets got better the ones who did not listen (such as myself) got worse. I’m not giving up, but it will take a long time and probably for me more than diet…it’s not too late for you!! Please look into Dr. Terry Wahl’s, Swank, etc! You are so fortunate to be so early on and young! You can kick it’s butt!DO IT!! Best wishes! http://www.msrebel.com

  • Silverdracos
    5 years ago

    People think I’m in denial when I talk about my MS because I talk about it with the same level of concern as my asthma and allergies. One Doctor was ready to sign me up for a mental evaluation before we got into family history. My Mother has been in long term care for over 7 years – 5 of those completely non-ambulatory with Huntington’s Disease. And being genetically transmitted I had a 50/50 chance of having it too. I’d already dealt with years of watching someone experience irredeemable neurodegeneration and the process of testing negative for my own case long before I poured boiling water over my hand and started falling down the stairs.

    I look at MS and see a manageable health disorder. There are meds to help prevent exacerbations and meds to help them heal. There are steps I can take to lessen my risks and keep myself healthy. I look at what I very nearly had and see a disease that can’t be modified significantly. One who’s primary “theraputic” med is still Haldol. Once it starts there is nothing to do but slide downhill with no hope of improvement. My Mother cannot control her arms and legs, or speak. If she tries very hard she can smile, but mostly she wails when people visit, because she is locked in this body until a secondary infection ends it.

    I can’t help but think that whatever MS might bring me, it is a blessing compared to the alternative.

  • Ashley Ringstaff moderator author
    5 years ago

    Wow – so you had a first hand experience of how much ‘worse’ it could be. See, i’ve never had that experience… so everything was just confusion to me. From what I was looking up online, before my diagnosis… I was reading brain tumor, and all this other stuff…

  • Mike
    5 years ago

    Yep….It was a relief to know what my body was doing. I was working a very physical job at Home Depot. I had been there for around 7 years. Then all of a sudden it was like my body started playing tricks on me. It took my doctors around six or seven months to finally tell me what was going on. I would not stop bugging them till they gave me a definite answer to the question, ” what the hell is wrong with me”. In December 2007 they told me I had MS. It was an great Christmas present, not really.

  • Ashley Ringstaff moderator author
    5 years ago

    Yeah it’s like a YES! Finally… then after it all sinks in, and you deal with it longer and “cope” with the Diagnosis.. you aren’t really celebrating anymore. That’s how I was at least.

  • Penny
    5 years ago

    Ashley, I have to tell you I too felt relieved with my diagnosis! I had been an RN for 28 years when I was diagnosed and when I went to the doc everything pointed to a problem with my 6th cranial nerve…I was certain I had a brain tumor. By the next morning when the neuro called me with my MRI results I already had visions of brain surgery,shaved head and chemo/radiation. MS diagnosis was a relief from all that! I knew so much progress had been made from my early beginnings as a nurse that MS was no longer a death sentence!

  • Faith French
    5 years ago

    I never considered my overwhelming fatigue as a health concern, tho it impacted my job a lot. It took months of walking, balance and bladder problems xfor me to see a neurologist, also suspecting a brain tumor. Hearing MS, and knowing nothing about it, was no relief at all. I brain tumor could be treated usually. But MS with no cure, and awful drug treatment options, is no picnic even on a sunny day!

    Longer story, 15 yrs later, I fired Drs, and see functional NP only. Between treating sick causes often naturally, detox, diet, chiro, PT, and exercise, it was bye-bye scooter and cane after 6-8 weeks. Small problems still, but my good (older) life is back. MS-mush brain is a party I want to leave, but again, no options. I can’t wait for the day when they say, “But it’s so simple! How did we miss it?”, and bye-bye MS.

    By coincidence, I join a drug trial at the NIH, and finally got diagnosed PPMS, as I always suspected. I try to resist my boiling anger towards the neuro, but I fell into his plan and allowed it for so long. I will kick my own butt after I exercise lots more.

  • Ashley Ringstaff moderator author
    5 years ago

    So you had like the medical background to have “medical diagnosis” in your head of many different possibilities…
    My mom is an RN – and when I was searching online about my symptoms and I brought up MS, she was like “No Way!”… yeah… there ya go! lol

  • ShellieR
    5 years ago

    I had the same experience. I have RRMS. When I arrived at the ER, they thought I’d had a stroke. A CT scan revealed a large, white blemish and I thought I had a brain tumor or a bleed of some kind. I was so relieved to find out I had something that, despite there is no cure, was 1) treatable and, 2) was not fatal. I can still do things and even on the bad days, I can still hug my kids, still visit with family and friends.

  • Angie
    5 years ago

    I went through the same thing. By the time they diagnosed me, they were throwing some pretty tough scenerios at me. When they made the diagnosis, I was relieved. I “grieved” for a couple of days, but thought, it could be a lot worse!

  • Ashley Ringstaff moderator author
    5 years ago

    Ah – My CT scan didn’t show anything… but I kept thinking brain tumor… cause that’s what you hear on like TV and stuff… I agree with you on your list… even though there is no cure – at least we get to enjoy our relationships w/ our family and friend everyday!

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