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Accepting reality

  • By Noni79

    The process of being diagnosed was a very long and daunting road. Sometimes I hit dead ends and sometimes there were detours. There were times that the road was lonely and other times it was a family affair. It took a very very long time to get diagnosed. Over a year of me proactively seeking the truth and wanting answers. After many visits to numerous providers and constantly and consistently being told that everything was ok… I just needed to relax and everything would be ok. I was seeing two neurologists. The first one sent me for a spinal tap. It came back with multiple bands… Obviously at that point something was wrong. However, she wanted to observe me for another year to watch my progression. Throughout that year it was torture. I would schedule to see her on multiple occasions just to be told that my symptoms were nothing to be concerned about. Fast forward to a year later… I almost passed out at work and my co-worker begged me to go to a local urgent care clinic. I reluctantly agreed and was told that I was either having a stroke or I had MS. He recommended that I go straight to the ER for further evaluation. The ER doctors immediately treated me for a MS relapse. I was given a high dose of steroids. I left the hospital feeling better than I had in a very long time. That visit gave me hope that I knew I was not making up my symptoms. I scheduled an appointment with another neurologist and she immediately scheduled an MRI. The scan came back with a 10mm lesion in my brain. She finally diagnosed me with Multiple Sclerosis. She specialized in Epilepsy and recommended I go back to my previous neurologist. I immediately scheduled the appointment and she put me on MS medication to slow the progression. I went through multiple emotions and still struggle with some of those today. After many many many years of being told that I was ok and no concern was necessary it’s still hard for me to know now what is important and what isn’t. Just because I have a diagnosis now I’m supposed to know what is MS related and what isn’t. This is a daily struggle inside myself. I still question if my diagnoses is correct. I still struggle trying to figure out what is important enough to contact my doctor or just let it go and run its course. This snowflake chronic illness makes it just that much harder to know if my symptoms are MS or again something I need to relax about and everything is ok. It’s hard to flip that switch even after a diagnosis to accept. Today I am being told I am hardheaded and I should know, but I don’t. I hope the longer I have this disease that I figure this out.

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  • By Nancy W

    It is hard to know when to contact the Dr and when not. But, knowing I have MS actually reduced my anxiety. When A new symptom comes up, I now wait 1-2 days before worrying about it.

    I had symptoms for 12 years before being diagnosed in 2003. I got very good at relaxation techniques because I thought they were all anxiety related. So, when I was finally diagnosed, it was actually a relief to know there was something physical going on.

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  • By melack01

    I have no idea half of the time what is MS and what is not. When my neurologist called last month to diagnose me with MS it seemed like he was reading from something when he was telling me about MS. The info on Tecfidera is almost word for word from their website. When I asked him how I would be able to tell what was MS and what wasn’t he referred me to the internet, where I found most of the things he said were not MS related probably are. So hopefully be studies up too.

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  • By Noni79

    I was diagnosed a little over a year ago. I just don’t know if I have accepted the diagnosis or if I really am hardheaded. Maybe a little bit of both. Haha! I’m just really hard on myself. Maybe one day I will accept reality but just not ready yet. When did you know without a doubt your diagnosis was right?

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  • By Nancy W

    Melack01, sounds like you need to find a more knowledgeable Dr. If you can.

    It took 4 months, a lot of tests and 3 different Drs. Before I believed it. My local private neurologist ordered a lot of tests but was not ready to confirm MS, especially after a spinal tap was negative. I then saw An MS specialist in Newark, NJ. He reviewed my tests and symptoms and said it was likely MS. To confirm this, I went to a neuro-ophthalmologist in Philadelphia. I started Copaxone in Dec 2003 and had a major attack that affected my walking and speaking in May 2004. That is when I was sure. Since then I have only had one more major attack in 2007 that led to my stopping work. I have had other smaller incidents since then but no changes in my MRI.

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  • By melack01

    Nancy W., I can’t really get a different neurologist. My healthcare is through the VA. He was very thorough with his testing. Including trying all sorts of things to get past my ticklish foot to confirm the Babinski sign. I was the one who put off having the lumbar puncture. Basically he is a very good neurologist, he just doesn’t specialize in MS. He has made sure that I’ve had appointments made with the neuropsychologist and optometrist. I have my next appointment with him in August, sooner if I have issues, and I’ll see how it goes. There is an MS specialty clinic in my state with the VA but it is 200 miles away.

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  • By Nancy W

    Melack01 I can understand that. There is good information on the internet. National Multiple Sclerosos Society, Multiple Sclerosis Society of America are good sources. I also belong to NARCOMs. That is an organization that does research and sends me a questionnaire every 6 months.

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  • By Meagan Heidelberg Moderator

    Thank you all for sharing your journeys with us. Please know we are always here for you! We appreciate you all being a part of our community.

    Meagan, MultipleSclerosis.net Team Member

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  • By Mark

    Noni79
    I was diagnosed 12 years ago and I’m still not sure I have completely accepted the reality of it all.
    I mean I know I have MS, but refuse to accept that it will “conquer” me.
    I have had great doctors for my journey however when I am told I “can’t or will never” do something again I refuse to comply and work until I Can do it, even just one more time.
    I don’t think I will ever accept that I have MS, yet know that I do.
    So I guess, I too am a bit hardheaded and hard on myself. But I will never accept that MS has all the control over me.

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  • By Rosemary

    Go to an ms center in or around your area. Call national ms center to recommend a neurologist who specialiZes in ms. It’s so so frustrating dealing with the unknown.

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  • By jthom84

    Hello. Yesterday I was diagnosed with MS. My neurologist gave me info for medication options so I’m still looking over those. I’m having a hard time just letting the news sink in I think. I don’t know what to expect or how to really feel about it. My whole life Ive been a physically active person and my job relies on my physical performance. It scares me that I may lose that. I just not sure where to start.

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  • By Nancy W

    Jthom. I am glad you found us. I was where you are in 2003. Life goes on. What are your symptoms? And what Disease Modifying Therapy (DMT) are you considering?

    Every Case of MSis a little different. In my case I was diagnosed at 47 bur had symptoms since I was 36. I started Copaxone right away and have been on it ever since. There are many more options for treatment these days.

    I am pretty stable now. Now major attacks since 2007. My MS is not visible when you someone meets me. It is mostly fatigue and other weird things. My latest MRI has not changed in over 2 year.

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  • By jthom84

    As far as treatment not sure yet I’m still reading all the info the neurologist gave me I’m supposed to go back in 2 weeks and have it figured out. I’m having issues with my left eye. That how I found out about my MS. The neurologist also found areas of my body where the feeling and sensations are not how the should be. I had an issue a few years ago with numbness in my foot and leg that lasted for weeks I had assumed it was like a pinched nerve but the neurologist said they are confident that it was MS related as some of the spots in my MRI had been around for a while. I also have to urinate a lot and I was told this could be due to MS as well.

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  • By Mark

    Hey jthom84
    I was there, 12 years ago. I cried, I hollered, I was scared, I was pissed off but I found a great MS Dr and it has made the journey easier. It will never be easy but with a good Dr and knowledge it is doable.
    Everyones symptoms are different and how they react to meds and diet are different, so read a lot and listen to your Dr. Make sure they know Everything, however so small it may make a big difference.
    I was told I’d never drive, walk without an aid, let alone run. I was also active before and thought it might end. NOT
    Never say Never, Never let MS win the game
    Keep faith in yourself and your “team”
    I now drive, walk without an aid or limp and lead an active life.
    I currently take Tecfidera and prior to that Avonex
    Have been relapse free for 3 years, keeping fingers crossed
    Trust yourself and your Dr
    Keep your chin up
    (ps I’m still scared and pissed and cry but not down and out, I won’t give up to MS)

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