Everyone responds differently to bad news. But when a Doctor tells you "You have MS" the responds can range from relief to some just dropped the world on you.
Mine was "kaboom there was an earth shattering kaboom" Thought my world was over. Doing some research helped with that but still. Didn't help with the near heart attack that news gave me.
Now your turn, maybe your experience can help a newly diagnosed get over the shock.
My initial though was um ... OK as I didn't know much on what it was. As I did research it was more kaboom. It scard the sh*t out of me. Worst was lag time between ER diagnosis and MS neurologist. I was only left with my thoughts, and research. 2 days later I was on strick autoimune protocol, and focused on the diet side, learning new ways to cook eat, and I still couldn't drive. Once I got into the MS specialist things got a little better (took several weeks), but it really took months before I think it sunk in. I would have days where I would just cry, as it felt like life was falling apart around me. In fact I still have these feelings, as it's a constant feeling of everything I "enjoy" is being taken away. My last MRI continued to drive that point home. Why I joined this group, and actually being able to discuss this, and read others going through this is quite helpful to me, and allowing me to be more at peace with it. I do think I overly project my fears onto life, so currently working on really not “over thinking” situation. Life is a scary, bumpy, *****ed up road. Us with MS is arguable worse than majorities, but doesn’t mean we can’t find things that make us happy and focus on those. So for me I am working on saying ***** it, it is the course it is going to take, I am not going to stress out about the unknown, and keep adjusting, moving forward, continue to find hobbies & things that make me happy, even though those things are changing which is ok. What makes us happy changes naturally in life as you progress in age and life experience. This just seems to force some change, but there is still so much to do in this world, I refuse to believe there is nothing. Easy to say, hard to do in real life, it takes mental practice. But talking about it helps cement it for me. So Kudos to this group.
Also a shameless promotion, I create a chat group for us. Would love folks to join it obv can’t replace having discussion etc. here. But I think it will deffinitely be great to connect with folks on here in real time..
You can join by following this link: https://app.groupme.com/join_group/22739641/ifdBsf
MS World also has chat rooms available, if you would like to check them out as well: MS World
MS Navigator Stephanie
I guess I sort of still qualify as a recently diagnosed since it was only 3 months ago when I got the diagnosis, and nearly 5 months since the relapse that led to my diagnosis.
In a nutshell at the initial consult after a battery of optical tests (due to optical neuritis that led to the diagnosis) and an exhaustive in depth analysis of my medical history, my neuro offered a few possible reasons for the optical neuritis, and one of them (the last he mentioned) was MS. He tested to rule out everything else and wound up settling on MS because everything else was ruled out. I remember when I received the call. In fact now that I think about it I can pinpoint the day and be within an hour of the actual time, and know what I was doing. It was Thursday, March 24, 2016. My folks were taking my wife, son, and I out to Freindly's (a local restaurant and ice cream parlor exclusive to New England). We had just finished our meals and desserts and were getting back into our minivan when my cell rang. It was about 6 pm or so EST. It was my neurologist, saying that I had MS. He wanted to discuss more at length, but I told him this wasn't the best time (due to my then almost 4 year old being in the van wanting to go home - I didn't tell the neuro that part) but he wanted me to write down three medications and research them, and set up an appointment for a follow up call the next day. It was then we spoke in depth about everything including the medications, and settled on a medication for me.
My thought process when receiving the initial news really was one of ambivalence, for lack of better word. I knew the neuro had investigated all other possibilities and ruled them out, so I had no doubts. Maybe that somewhat put me at ease. Also, what was I going to do, argue? Not accept the diagnosis? "Sorry doc, try again. I don't like that diagnosis." Yeah, I knew better than to think that would work. Truthfully the biggest part of my being at ease was my faith. I believe God has a plan for me, and while the diagnosis of MS wouldn't be a part of my plan for my life, it apparently was part of the plan God has for my life. Why? No clue, but it is. So, by faith I have to accept that His plan is better than any plan I could have, and that He will work things together for my good and His glory.
And that is where I am today, 3 months removed from receiving the diagnosis. There are good days, and there are bad days, both psychologically and physically. After doing loads of research on line, I decided that I am going to fight MS with everything I got until it finally gets the better of me. I know it will someday, but I'm not interested in having that be anytime soon. Of course, God has the final say, but I don't think He would put this staunch drive to fight in me if there wasn't more work for me to do for Him.
If you are not aware already, the National MS Society has MS Navigators available to answer your questions, offer support, and connect you with information about MS and local programs and services. Please feel free to call us at 1-800-344-4867 7a-5p MST to speak with a Navigator.
MS Navigator Stephanie
You know, the first general neurologist said "Well, I think you already know this, but it looks like it might be MS." I requested a referral to an MS specialist, which she gave me, and then I scheduled that appointment with the front desk and went home. I called back 2 days later to confirm with her nurse that I had heard the news right. Her response was "Yah, pretty much."
The MS Neuro was awesome. Reviewed all my tests with me, but said I needed a CT Scan to rule out neuro sarcoidosis first. In the meantime, I was given a bunch of stuff to review on DMDs. The CT scan was clear, so we then started discussing treatments. She never said the words "you have MS." I was waiting for it, and honestly, I can convince myself easily that this is all one big mistake.
Of course brain and spinal lesions, peristent issues with my right arm, and 14 Oligoclonal bands say otherwise...but I can only "see" one of those things. It's been almost 8 months since I was diagnosed (I guess), but it still feels like it's not real.
When I was told that I had MS I was in the ER because I couldn't feel from my ribs down. I couldn't stand to save my live. I was very fit and wasn't sure what was happening. I was told and when all the testing came back to confirm, I just laughed. I know how serious it was and how things were like for me. It was shock that took over. It was because something like this is normal for me. They though I ws really messed up in the head because that isn't the normal reaction. So I go more tests and I was fine. What else are you going to do, cry? I rather not. Was I going to be fearful, why? Sure somethings might be scary to look at but I laughed than because I have always ran into complications what one more. I laugh now because no matter how hard it trying it won't talk over. We are our own worse enemies, even before MS. Mind over matter. That's nt saying if you cna't walk you think you can and you will. It's saying don't let that bother you. Let it take my legs I will still laugh. That's just one more hurdle I'll have to get pass.
For those taht are new with this disease. Even if it took everything from you don't let it bother you, for than you let it win. I hate days where I struggle moving and I need assistance. I hate let MS win, even more than I hate not getting around so well. Don't worry what others think either. Let them think. It takes a much stronger person to live with daily struggles than someone that just has life going easily for them. People will pick up on how you are struggling and still see you keep going. Have your moments where you're down but let them be moments. Every time MS knocks you down it tries to break you. Laugh at it, knowing it can't stop who you are.
I cried for about a month when I was finally told for sure that it was MS that was causing my symptoms. On one hand I was relieved that we finally found out what was causing me grief, and on the other I was completely devastated because my mom has MS and I've had patients with MS so I knew exactly what my future held. The day I found out was the best and worst day I had had all at once.
I was diagnosed in August of 2015 after a two month spell of optic neuritis and migraines. When I went in for a my MRI my PCP told me he was concerned that I had a tumor. I was driving home from my MRI and received the call from my PCP to come in as soon as I was back to town and bring my husband. I started bawling as I was driving cause I just knew I had a tumor and what was I going to do. When we met with my PCP and he told me I had MS I was actually relieved because I was thinking tumor and cancer (it runs on both sides of my family). I stay positive majority of the time but when I am having a bad relapse I get down and hate the fact that I have MS and can't go do the things that I once enjoyed and feel like I letting my family and friends down. When it comes down to it I am a MS warrior and do whatever I can to better my life and my symptoms. I have MS but it does not define who I am:)
Staying positive is one of the ways we have of beating this thing. I get the feeling of letting my wife down and family also usually during a big relapse like I'm in now. I have a very supportive family say for 2 extended family members that think if its not happinging to them its not happening period. My thoughts on that is one day there eyes will open too. So you keep being a warrior for the ones that can't because of this and when you can't we will be a warrior for you.
Remember we are all in this together and together we WILL win this. Thanks for your responds.
For me it was a relief. I was 47 when diagnosed tho i had symptoms since 16, they probably didnt tell me because there was no treatment. After years of being called, lazy, stupid, clumsy, and sloppy it was a peaceful bit of news. The family even forced me to go to a group for spenders annon because I was in debt, I was always making mistakes like giving two twenties for groceries when the bill was $18. I had to listen to people talk about buying stuff they didnt need or didnt fit, just to buy something.
All the putdowns were now irrelevant. And now I new what was going on and could plan for myself. It was like being free. I was now free of the abuse of family.
I had no knowledge that symptoms came and went. So assuming I was going to be blind I decided I would learn braille. When I couldnt walk I planned on leaving the house with steps and get a motorized chair. I didnt mind that I had ms. The mind games I lived through were worse.
And yeah, ms has messed up my life good but it is a mind game that is not a lie, the truth has set me free, giggle.
I was just diagnosed in March 2015 and I am not sure if it's still hit me although life has changed somewhat! My first episode that led to this was in September and I went through the holiday season working retail and wondering where my body and brain had gone!
Making it through the holidays and inventory was a personal goal of mine. I did it and it was hard. My boss was gracious enough to let me change my hours to all opening shifts and I was able to cut 30 minutes to an hour off of my day as well. That alone helped me immensely. Changing my diet also made me feel better. I think taking these steps in preparation for the diagnosis helped me mentally and helped me to remain positive. I was trying to prepare myself just in case. Then...it seemed like I was totally healthy and I had no issues whatsoever.
When they told me I had MS and wanted to get me started on meds I just came home and curled up on the bed and cried and cried and cried. I guess I had tricked myself into thinking I was better...they were wrong...and life would go on as normal. I was so upset about how this was going to affect my husband. Not me...my husband. He has been nothing but supportive and insists on giving me my injections because we are in this together.
I get angry. I get depressed. I have no reason to do this as I am surrounded by people who have done nothing but help me. I just get so mad that I can't go shopping for hours with my sister or that I can't sit outside in the sun all day and read a book or walk my dog for miles like I used to. I get tired early; it's hard to stay out late. Little things. What did mom always say? Life isn't fair? (laugh) It's not, but it's still good.
Modification. Support. Helps me daily. I wish everyone the best!! xxx
I was told i had MS this year in February , after months not being able to walk or feel my face / arm. I remember that day like if it was yesterday.
I was all alone in the hospital when 3 different doctors/neurologist came to see me. They said it was MS but they wanted to run a couple more test . When all the results came in they told me its very advanced for my age and ive had it for years .
At first i cried , because i was alone when they gave me the news and also because i knew something was wrong with me sonce 2012 , which was the first time my leg went numbed.
Then , i was mad at everyone and everything . I have been dealing with the same pain for years and nobody in my family believed me , they would think i was exaggerating when i would lay in bed without moving because it hurt . I was also mad because i have been going to a different hospital since 2012 and they would only do x-rays and send me home with tylenol.
I have always felt like giving up in life since the pain started. I always feel alone and empty , im not sure if its because of the MS that it has gotten worst or its just me . I keep my head up and push forward in life , im to young to be depressed , and i wont let this take over me .
I actually felt very relieved. I did not have a history of symptoms and my MRIs only showed one lesion. Further tests were not clear and they started speculating brain tumor. I had nightmares about it. They finally did a lumbar puncture and tested spinal fluid. That's when they felt comfortable diagnosing me with MS. I cried from relief. I knew I could tackle MS. I immediately started doing research and learning everything I could. I signed up for Walk MS and proudly announced to everyone my "uniqueness". I'm not embarrassed about it, and I feel a sense of relief knowing that everyone I come in contact with knows. That way if I do something strange, they know. If I say I'm tired and want to go home, they don't ask why. My symptoms are very mild and you wouldn't know I have it unless I told you. I do struggle with my husband understanding everything and it's my fault. I don't explain thins to him as much as I do to others.
I was diagnosed in March 2015 at age 29. My husband and I had just celebrated our first wedding anniversary October 2014 and had packed up and moved to DC for new jobs and a new start in January 2015. Life was finally coming together, and then this. I was definitely surprised, but when I started putting everything together, it made sense. I spent a few months in "okay, what's next?" mode, which led me to not really dealing with the anger I felt. I was more worried about how my husband and family would take the news. My mom loves WebMD, so I knew she'd head there immediately and be convinced I was dying. That's why I waited until the MRI results were in before I said anything to my parents. I even gave my husband an out. I told him we'd only been married a year and if he wanted to walk away right then, I'd respect that and would understand. His response was, "I'm not going anywhere. I said in sickness and in health, until death do us part, and I meant it. We're a team, and we're going to face this together."
I think the hardest part was the anger I felt toward my mom because she was in denial that I actually have MS. She wanted to believe it was lyme disease or any number of other things. It made me feel like I didn't have her support, which is hard. I finally had to tell her, firmly, that it's MS, she's not a doctor, and if she really loved me and wanted to support me, she would accept it and be grateful that it wasn't something else much worse. That got the point across.
I started on Tecfidera in May 2015, and boy was the first month difficult. I had every side effect on the label, and to the extreme. But after that first month, it was like the clouds had parted and my body was adjusted. I still have flushing from time to time, but not nearly like I had before. I switched neurologists, too, and my new one is a breath of fresh air. He's very positive about my prognosis long-term, being young and healthy otherwise and starting treatment within maybe a year and a half of the start of symptoms. I'm proud to say my annual MRIs revealed no new lesions and no active lesions. I feel tired, but it's manageable. I take biotin, vitamin D, and a probiotic to help with that. I get muscle spasms sometimes, but they mostly come after overuse.
All in all, I'm feeling better about my MS journey. I've accepted it, and I even joke about it sometimes when friends ask about how I'm doing. If everything is stable this winter, I may come off the Tecfidera so we can try to start a family. :)
I didn't. My neurologist diagnosed me with MS 2 years ago based solely on my exams. Then I had a MRI of my brain with contrast. It was written right on the report that I had MS. So what I did was go to another neurologist who said yep those are lesions but not MS. He told me that my migraines did that. And that my laundry list of problems are all just "Happy Little Coincidences" all independant of each other. Two years later I start having neurological attacks that land me in the hospital. I go back to the 1st neurologist as I start to really think that he and the radiologist were right. He tells me that the neurolgical attacks are what MS is like for me. And he tells me that migraine lesions are purely a judgment call as there is no diagnosing standard. And that the knowledge of my chronic migraines and the associated medications were probably how he came to that decision. So it has taken me another week for this to start to sink in. Now I am sure this is what I have. Now just kinda scared.
I'm a type 1 diabetic and my eye was sore (around Thanksgiving 2017), so I went to the ophthamologist. My eyes were fine and vision perfect, so he referred me to a neuro-ophthmologist. She diagnosed optic neuritis and thought it might be MS so sent me for a brain MRI and blood work. What do you know?! Lesions. At my follow-up with her, on February 9, 2018, she said they would do some other tests (an MRI of my spine and a spinal tap) and she referred me to neurology, but yes, she would say it was MS.
I asked her if she was diagnosing me or just referring me to neurology. She said she was diagnosing me, then she said she was sorry.
My reaction was f***! I didn't say that, of course. I don't think I said much of anything.
I had heard of MS, but didn't really know much. I went home and did a quick Google search. I cried and felt sorry for myself. I went to appointments and more appointments and had more and more tests. Slowly but surely I've been doing more research.
Signing up for the MSWalk 2018 has helped because the advertising for fundraising has incited a positive (and generous) response from people.
Back to appointment and research!