Flash Back To The Very Beginning

ItBacktothebeginning has been many years ago, but that day in April 2002 is a one day that I will never forget. I was at work struggling with not being able to see anything out of my left eye. Logically, I scheduled an appointment  with my eye doctor only thinking that I was going blind. I have always been the type of person that was open with my managers about anything medical, especially when I was a little scared. So, my manager and a co-worker I was close to, knew why I had to leave work early. Both of them did offer to drive me to my appointment, but I was stubborn and said I could drive myself. As I was leaving they both told me to call them if I needed anything and definitely let them know what I find out from the doctor. 

My drive from my old office to my eye doctor would be a 30 minute drive on a good day with hardly any traffic, but there was an unusual amount of traffic on this day causing the drive to take close to an hour! Luckily I always allow myself extra time because I really do hate being late, so I did make it on time! Of course I had to wait in the waiting room for a short time which allowed me time to respond to the text message from my manager and co-worker with them letting me know they were thinking about me!

When the doctor’s assistant called me back to the room, she asked me to explain what I was going through, which is always just a little frustrating because I had already explained this to the scheduler before hand. But, I did explain to her that I could not see out of my left eye but that my right eye was just fine. She had me to do the eye exam, I guess just to confirm what I had been saying. After another few minutes the doctor came in with his very pleasant personality and was trying to be as comforting as he could when I was already getting more concerned. My eye doctor, Dr. Walter Atlas, looked over the information his assistant had obtained, looked into my eye, did a few other what I considered random tests and then dilated my eye to do the last exam. He left me alone in the room for what seemed like hours when in all reality was probably just 30 minutes. When he came back in he said, “Well, Alyssa you do not have any kind of obstructions in your eye but obviously, something is not right.” He then carried on to tell me he was Unknownconcerned with what my symptoms were, so he consulted with some of his colleagues and it was decided among several of them, that is was looking like I had Multiple Sclerosis. He was not able to finish his sentence when I started crying hysterically. The poor man did not know how to handle a young girl of 19 that was crying inconsolably. I did already know he had a daughter a little younger than me and corse hated seeing his daughter cry and not be able to fix it, so seeing me all alone in his office made him think of her, which he did tell me later. Dr. Atlas wanted me to be able to find out 100% for sure if it really was MS so he scheduled me a MRI for that same evening, only 2 hours from the time I left.

His news caught me SO off guard, it was literally the last thing I ever expected to hear that day. As I sat there alone in his office trying to make sense of what he had just told me all I was able to think of was that my father’s wife has MS and needed a cane or a wheelchair to get around, and I kept seeing that happening to me as well. I was so young, native and had only been exposed to one person with MS and knew no one in my family had MS. At that time I really did not know what MS was. In my young mind I was thinking I was going to be diagnosed, end up in a wheelchair and die sooner than I ever could have thought. Now that I am older and wiser, I know how absolutely insane that sounds, but I was young!Love

When I left my eye doctor’s office I was still so upset and still crying, plus my eyes were still dilated, I actually took a wrong turn and got lost. At that point I was so frustrated and did not know what to do, so I pulled over to the nearest gas station to ask for directions. I must have looked a mess but the nice lady at the counter informed me that my house was really close and told me where I needed to turn. I got back into my car and finished my drive home. I walked in the door still crying and SO confused I finally decided to call my mother and give her my news. Sometimes it doesn’t help when you are already upset to have the person on the other line upset as well. 

Finally, it was time for me to get to the hospital for the first MRI I have ever had. I remembering laying the machine, having to be perfectly still scared to death. After 2 and a half very long hours, the test was finally over. As all of your that I have had a MRI, they are not allowed to tell you anything which has always been so frustrating. You know images (4)they see the screen and hopefully know what they are looking at. I left the hospital in tears again because I hate waiting for answers, especially about something that could be life altering. Honestly, I had not been home for 30 minutes when my eye doctor, of all people called me from his own home to give me the answers I wanted but did not really want to hear. He calmly explained to me that the MRI results did show that I did have MS. I guess he had really been prepared before I had left his office as to what the results were going to be, because he had already scheduled me with one of, if not the best Neurologist in my area for just a couple of days later. 

Over the next few posts I am planning to continue how my journey went when I was first diagnosed. The next post I will tell you about my first appointment with the best and most compassionate Neurologist I have ever met, Dr. Michael Kaufman! It is easier and better for me to remember about all the feeling I had in the very beginning slowly. I do remember the first several years was incredibly hard for me and my ways for coping back then, were not anything that I would recommend anyone else doing. My coping mechanisms were not smart, they were immature and unhealthy, nothing illegal I promise!

I hope y’all have a good evening and thank you for stopping by to read my post for the day. This will kind of be a post series because it takes me a lot of time and emotion to do this. As always I truly love your comments and I do always respond as quickly as possible. Our communications really do make me so happy and I do hope you are enjoying my writing as much as I enjoy sharing this with you! 

Love 2

 

Always, Alyssa

 

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19 thoughts on “Flash Back To The Very Beginning

  1. It was down to my eye doctor too that I ever got diagnosed (my GP was rubbish)! Out of interest how long roughly did the whole diagnosis take? It sounds like it was quite fast for you & that you had some wonderful consultants. I hope you are doing okay ☺️

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    • Isn’t it crazy the eye doctor gives us the news that changed our lives? My eye doctor then was so kind and amazing and had several doctor friends, so it did not take long at all. If this happened now with the way things are going, I think my diagnosis would have taken years, but I could be wrong about that. I am hanging in there, the flare up I have been dealing with has been absolutely horrible but it will get better even if it does not happen as quickly as I would like for it to. I hope you are doing well and feeling okay as well!!!

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      • I know, my GP kept sending me away, telling me my symptoms were just stress. My eye doctor told me to keep going back until I got referred to a neurologist & he even wrote her a letter! I don’t think the letter helped though, it was only because my husband went to my GP & demanded that she referred me, that I eventually got to see a specialist. But if it wasn’t for my eye doctor, I’d have given up going to my GP & probably still wouldn’t have been any further along with getting diagnosed now!
        I hope the flare up doesn’t last long for you. MS is all still quite new to me & I have read that people tend to suffer more in the heat, but I’ve always found that winter seems to set my symptoms off more, do you find it worse in the cold?

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      • Honestly any extreme temps bother me for a short time. It seems like my body needs to have a lot of time to adjust and then I seem to be okay. But I do think the heat does cause more issues. I don’t think any doctors really know what causes more symptoms and how to avoid them. MS has a mind of it’s own and just does what it wants. I do know for a fact that stress is a HUGE trigger. I think stress is what caused my terrible flare up and more stress just keeps coming my way. Thinks will get better, it just seems to take forever. I am glad your husband made the demands with your GP, sometimes you need to strongly demand things you know are needed!!!

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  2. Bon giorno carissima amica. Your account of the initial diagnosis is heartbreaking and enlightening for all of us, not only yourself. At the ophtalmologist’s office you realized the full dimension of our human fragility, an unusual experience for a supposedly carefree teenager. In another context and circunstances, I also had the same scary feeling as a teen. It was the day that the goons of the military dictatorship that was ruling my country of birth beat me savagely up with a baton in a shop’s corner after they chased me down from a student march. After that kind of experience you are never the same as you value each moment of your God-granted life much more fully.
    Un grosso baccione. Arrivederci!

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  3. You have recounted this incredibly well, especially as it must be a pretty emotional thing to go back over. You were young, never expected any of the things that were found or that you were told, as you said about being ‘caught off guard’, and I can only imagine how much that shook you, how difficult it was to come to terms with and to go through the extra tests and appointments you did. “The poor man did not know how to handle a young girl of 19 that was crying inconsolably” – I think this could be said about so many medical professionals, even when they should be used to dealing with such issues and news and such. You are an amazing lady and I’ll look forward to (doesn’t sound like the right expression here!) to hearing about the next steps you went through. Thank you for sharing so honestly.x

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    • Thank you for your kind words. It definitely was a shocking a unpleasant time but my doctor did a pretty good job. He normally only deals with eye issues and he took it a step up by talking to those he knew to figure out what was going on and even called me from his home to tell me the news. Doctors now days do not take that extra step. For some reason this post was a little hard to write but I am glad I did. I will be working on the next step soon. I can’t believe how much I remember and the details of it all! Take Care!!

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  4. I was 20 when I started working for the best neurologist in my city (some patients told me he cried with them when giving certain diagnoses!) Before then I truly thought MS was the end of the world for those diagnosed but I learned that that’s not always the case. I’m sorry you have to go through it but I’m glad you’re telling your story! I hope all is well and you’re getting back on your feet okay! ❤️

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    • It is crazy it is so hard to find a Neurologist that really deeply cares. A lot of them have a huge ego and they do not listen. I was blessed with 2 that were amazing but unfortunately they retired. Now it is so hard to find one that has similar qualities. My current neurologist does not fit the bill, she is on maternity leave right now and I think before she gets back, I will have found a new one that I find better. I don’t need to get the warm and fuzzys like my husband would say, I just need to have comfort and confidence in them! That you for your response and I am going to continue with my journey, it just takes a tole on me and almost makes me a little sad.

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      • Aww I’m sorry your current doctor isn’t great! Sometimes it’s so hard to find a doctor that you can click with and when you have a serious illness like MS it’s so important to have a good relationship with your doctor. I hope you can find a better one soon!

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  5. Oh Alyssa, that experience sounds just like a whirlwind of emotion – finding out something that you are completely not expecting to hear. It sounds as though your eye doctor and neurologist were fantastic and you manage to have a very quick diagnosis. I’m looking forward to reading more, thank you so much for your honest post. You’re so brave and strong! Wishing you all the best xx

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    • Thank you so much! The eye doctor and neurologist were so amazing! I wish that neurologist did not retire he was the most AMAZING man and put up with a lot of my moods and emotions. The diagnosis definitely came as shock and I did not handle it well at first. But, I am still trying and working on more posts about the entire process. Thank you for your comment!!!! Take care!!

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  6. I just wrote a whole reply to this which for some reason didn’t save! I just wanted to say thank you for writing so honestly, it sounded so emotional and it must’ve been such a shock for you to get such an unexpected diagnosis. I’m so glad that your eye doctor and neurologist and supportive and it sounds like it all came together very quickly. I’m looking forward to reading your next blog post. Wishing you all the very best xx

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