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    I don't know that I have MS, but I have most of the symptoms so my physicians are highly suspicious. Because of an implantable device, I cannot have an MRI which is really mucking up the works. I am moving toward having the device surgically removed to then enable an MRI be done and hopefully get a diagnosis so I know what I'm dealing with. I was hoping I had Lyme disease (not something you hear everyday) because that's treatable with antibiotic therapy and often times symptoms resolve. Unfortunately my Lyme test returned negative. I am a registered nurse, and of the other choices I can think of that may be causing my symptoms, I'm now hoping for recurring/remitting MS. Also, not something you hear everyday. I have never been on disability before, I have always been the one everyone counts on (part of being a nurse, I think!), and now I am not that person. My husband is struggling as he doesn't know what's wrong with me, and is being pushed into a role unfamiliar to him. It's also a role that is unnatural to him. I feel as though I'm watching myself disappear.
  • maria1
    Devon, You may feel comfortable thinking of it as chrysalis, the state the caterpillar is in before becoming the butterfly. There is a new you blooming into something more powerful than the caterpillar you were. You are transitioning into a place where your knowledge will enhance your life. As we all morph from one stage to another it is up to us to do it gracefully. As grand as it was to be the 'doer' in a family it is equally grand to be 'done for', giving other memebers of the family the opportunity to share their abilities as you have done, and for you to appreciate what they do.

    ​Like the musical chairs we all change places and it is up to us to make the best of it, alas, old habits die hard, so look at it as an opportunity to grow, albeit, not just the way you planned.
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    Thank you, for reading my post and for replying.  What you say makes sense.  I ask God "what is it you want me to learn from this" and go from there.  Being human, however, doesn't make it so simple to change roles, does it?

    Thanks again.
  • bubbadog66
    I totally understand and walk in that place as well. Not my will but His right!?...or something like that. Saw my 2nd opinion and most like new neurologist today and discuss the medical physical plan and options for my MS...was not a fan of sitting in AC office doing that when there is "so many things else to do"...I have MS and today was in the 90's in ME, in my "normal" world i would wanna bake in the sun it EXTREMELY fatiguing...appreciated your communication about your "stuff" me hope knowing i'm not alone in my "thoughts" anymore and i can get from here to there if i do my part ...made total sense to me every emotion and fear about it...
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    Thank you for sharing your experience with me.  None of us are alone, those with, or without MS. I know that in my heart, but sometimes my head gets in the way.  So thanks for the reminder.  I wish you the very best in your journey ahead, and remember you're not alone either.




  • maria1
    The alarm would ring, we will bolt out of bed with just enough time to ready ourselves for work. We wouldn't even bother with breakfast, instead getting a roll with butter and a cup of swill from the coffee wagon at work. Of course, we had practiced so long that it only took a minute to line both eyes with perfection. The face powder and rouge just right too. Them we were off to the business of the job we believe would define who we were/are. Day in - day out, the routine of life we are comfortable with, the rote habits we never think of. Everything so easy, walking we take for granted. Did you ever think that if kids had bladder and bowel control they would never have cushions to land on when they fell as they learned to walk.(just a segue through time, giggle)

    Habits and routines we have perfected are easy to keep. Things we do well are trusted friends.
    ​The new, the strange , the difficult, we seem unprepared for, we seem set in our ways, not that we are lazy but that we enjoy success and are comfortable winning. Being challenged is fine for children, new experiences, new wonders, new skills to master. Set in our ways we are spoiled with the sameness of life and its routine success. So yes, we like the old winning ways - until we find small successes building into the new champions we become - just another right of passage of being human, a yuck or a giggle.
  • devons1972
    Talk about profound!  That's an amazing response I need to read and reread.  Thank you!
  • montanaspirit
    Devon, the unknown is truly one of the worst parts, if not the worst part.  No matter what the outcome(s) of your tests please trust that you are strong enough to handle whatever the diganosis.  It is so hard to walk down a path with the continuing "no's" or "it's not this, maybe it's that".  Sometimes it feels quite like a guessing game.  I was diagnosed with RRMS last year, but the chances are I've been having "episodes" since 2011.  I'm so stubborn that even after they found lesions on my MRI, as my ocular disturbances continued, I still remained in denial.  Finally my neuro sat me down and point blank said what is it going to take for me to be convinced and get on a DMT as soon as possible.  I opted for a lumbar puncture, and 16 olig bands later I couldn't deny it anymore.  What I thought would be devastating though was actually a relief.  A lumbar puncture may be an option for you as well.  It's not the most pleasant thing ever, but maybe the results of that in combination with an EPT will help to narrow down a diagnosis.  I'm sending up prayers for you and your husband as you navigate this path.
  • devons1972
    Thanks so much for the response.  Good idea about the EPT.  I'm working on the LP.  I'm actually trying to coordinate it so they do it while I'm under anesthesia when they take out my spinal stimulator.  I see a neurologist specializing in MS July 19th and I think that's when all those tests will be ordered.  I have a great PCP right now, but he's limited in MS knowledge.  How do I go about having the EPT?  Do I look for an opthamologist specializing in MS or can optometrists do it?  I don't know much about this topic.  Thanks again!
  • devons1972
    Thank you for sharing your experience with me.  It sucks having to have a surgery to remove a spinal stimulator so I can have an MRI and let me tell you, there BETTER be lesions there.  If my MRI is clean and if they do a lumbar puncture and it's clean and I have a surgery for nothing AND still no answers, I'm not going to be pleased!

    Hope you are currently well.