Good news - but now the confusion

Discussion in 'The Watercooler' started by mattsmom27, Jan 23, 2007.

  1. mattsmom27

    mattsmom27 Active Member

    I had a call from my doctor's office this morning with my MRI report (brain MRI). All was well and good. So that is a huge relief that my brain isn't festering some ominous problem. I am not off the hook MS wise until I can have my spine MRI as some people have lesions on the spine as opposed to the brain (or both). But all in all, a great sign.
    How weird am I though that I am kind of pi#$ed right off??? I mean, obviously I am grateful there is nothing bad showing on my brain scan. The part that is ticking me right off is that not one test can find out what the heck is going on in my body and I am frustrated to tears. My body is going to he#@ in a handbasket and my quality of life is so impaired that I often don't feel like I'm living at all. So I really just need some answers.
    I do see the neurologist Feb 1, so not long to wait to see her finally. But wondering what/if anything, she is going to be able to do for me. I'm so darn confused and more than a little bit upset, where I should be jumping for joy that I don't have a bad MRI report.
    I think that the worst part of all, aside of course from the obvious of feeling like crap much of the time, having days bed ridden, multiple ER visits, major physical pain, vision problems etc ... is that when you have no answer for yourself as to what is happening, you also have no answers for anybody around you either. When you "look normal" but your legs are in massive spasm, or your foot is dragging, or your back is out, or your bladder/esophagus etc is in spasm, or your vision is blurred or you have such bad vertigo that you nearly fall over just from shifting your eyes or slightly moving your head ... how do you help people understand that you are really not okay? That you aren't up to the things they want/need from you? What is happening in my body is very real and very debilitating and once again I have no answers.
    How stupid is it that had there been some answers on MRI, regardless of what it was, I would have been grateful to just have answers. But here I am with tears welling in my eyes out of sheer desperation for some sort of conclusion to all of this?
    I'm plum tired. I waited so long for what was thought to be the testing that would provide some answers. I've been through so many other tests. This process has been long and I've suffered alot in the waiting time. And I am no further ahead than I was when I started this all. I've tried to remain upbeat despite major physical pain and losing my quality of life. I have sucked up missing hosting family dinners, Christmas. I have missed 95% of easy child's hockey games this season. I have not been able to attend any of difficult child's basketball games. I have not walked further than the corner store in over a month, and only on good days. Any further, even on good days, and I am in bed for 2 days with pain pain pain. My dog seriously has not been for an actual walk since before Christmas. I don't feel like sucking it up anymore. I am growing angry and weary. *sigh*
    Putting it in perspective, the MRI results are good ones. Truly under all of my emotion I am grateful. Hope all of that makes sense???

    Melissa ... think I just need a hug!
     
  2. Suz

    Suz (the future) MRS. GERE

    Melissa, I've been where you are except my symptoms weren't as serious. It's VERY frustrating to not have any answers. I hope the docs can make a determination soon and find a treatment that will help. The not knowing can be horrendous.

    Suz
     
  3. busywend

    busywend Well-Known Member Staff Member

    Melissa, I wonder if you have had the spinal fluid test yet?

    Also, have you looked into Fibromyalgia?
     
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Melissa..

    I have so been where you are. The negative tests, the awful pain and weird symptoms, the being housebound and bedridden, months of testing...yep...been there done that. Heck I went years of testing.

    I hope you find out answers soon.
     
  5. Lothlorien

    Lothlorien Active Member Staff Member

    Have you been tested for Lyme's Disease?
     
  6. dreamer

    dreamer New Member

    I admit, I did not read any replies to your post here.

    Yes, it was frustrating for me, too, and for my friend (who does have MS) diagnosis took years....
    Very similar to the kids GFGness- it took SO long to get answers and without answers, how can you be heelped----even bad news is some news and a place to start.
    People forget that so many health issues are not obvious that you can SEE. You can see a person with asthma struggling tobreathe, but you usually do not SEE cancer, MS, RA, Lupus, heart disease, emphsema, kidney failure. hepatitis. Sometimes you can see something as disease progresses, weight loss, poor skin color, weird eye colors etc, but so many illnesses do not have outward obvious things that tell anyone hey I am sick, my pain is real.
    It took years and a surgery (many years before diagnosis) and so many miscarriages before the dots were finally connected and the reason for my 2 years being a quadriplegic were found.
    It is SO frustrating. and my husband was treatd for mental illness for over a decade before they finally realized hey, it is not mental illnes per se- it is brain tumors, low oxygen,
    for my son I begged for MRI almost from birth- he did not get one till age 8----(or was it 9?) and THEN they FINALLY said oh- yeah, he is not faking, he is not just being a brat, no it is not parenting- he has CP and seizures------this AFTER medication trials and tons of behav mod and accusing me of things.

    When we watch other people, we need to keep it in mind that well- we need to try to give others the benefit of doubt, too. It is easy for us to judge others and think they are just lazy, or do not want to do what normal healthy people should do in our opinion, BUT even when we are under a docs care and even when docs are seeking a diagnosis..it is not always found in a timely manner. and it is so frustrating.

    what is nice for us now is that there are such tools as MRIs etc.....it helps. It was not really that long ago there was not such a tool to help diagnosis.
    Even now, i heard the length of time to diagnosis for many illnesses is approx 7 years!

    Hang in there....and remind people most things are not so obvious.....ask them flat out if they think you are faking- and why would they think such a thing?

    Not knowing? that does stink...once you know you can begin to do something about it. Most people do not like not knowing.
    I feel your frustration. I'm sorry. I hope they can find answers soon.
     
Loading...