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Accepting reality

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.

  1. 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.

    1. Hi Noni79.
      So sorry for the delay in response.
      We appreciate you reaching out to us and our community regarding your journey of how your MS was diagnosed. Please know you're not alone.
      Here are some articles as well as information that I think you will find helpful;
      Various symptoms of MS; https://multiplesclerosis.net/symptoms/.
      Tips for the newly diagnosed; https://multiplesclerosis.net/living-with-ms/tips-for-the-newly-diagnosed/.
      https://multiplesclerosis.net/living-with-ms/my-advice-for-newly-diagnosed/.

      Hoping that you found these helpful. Always feel free to come by and vent. We are always here for you!
      Meagan, MultipleSclerosis.net Team Member

  2. 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.

    1. Hi Melack01.
      It's so difficult to explain everything that MS can cause and be responsible for. We try to do a great job in sharing the information here for our community. Here are symptoms of MS; https://multiplesclerosis.net/symptoms/. Thank you for sharing and being a part of our community!
      Meagan, MultipleSclerosis.net Team Member

  3. 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?

    1. 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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