FAQ/Help |
Calendar |
Search |
Today's Posts |
|
04-10-2008, 07:37 AM | #1 | |||
|
||||
Member
|
Why is telling this so hard?
I've been here on this board for months, and was, and still am, at the other site for over a year, you aren't strangers, and yet I feel as though I'm about to jump off a cliff. I'm actually tightening up trying to write this. Start over. I was just diagnosed with MS on Monday at the age of 62, 27 1/2 years after I was first told I had it, and about 23 years after I was told I didn't. The 1st dx was based on sx, time and space, and clinical observation, taking it back was based on my first clear MRI. Hearing loss (bilateral and for some time now, severe), visual issues, dysphagia, bowels, bladder, weakness,all happened real early on...tingly, electrical, and numb feelings didn't happen till relatively late. Over the years I've been checked for about every dx in the book, including some off the wall ones this last year, and now, something like 30 years since first symptoms, through a couple of shear flukes or, as Neuro called them as he rolled his eyes, accidents, I have a diagnosis. O Bands, EPS, symptoms out the ying yang,and now, brain lesions to boot.... This past year, due to odd test results, rule out this and rule out that, has been so bizarre, I often felt I sounded like an internet crank. I think that is why I had trouble starting to write, I felt I lacked credibility....Bizarre? No, that's an understatement. Anyway, I will start REBIF as soon as my LFTs and pancreatic enzymes return to normal. An oral Prednisone/IMURAN attack on my liver and pancreas put me in the hospital Fri. through Sun. I am tapering off the Pred. and the Imuran was stopped as soon as my bloodwork came back. The Imuran was just a stopgap, in an attempt to decrease the number of attacks I was having and to slow down the accumulation of damage that was happening this past year. The Dr. who put me on it was my DR. House, and my angel. I will be forever thankful to her, I only wish she could continue as part of my treatment team. Well, I don't feel any more credible, but I do feel relieved. Relieved that I don't have to go to Mayo, or Onco's, or have more LPs, or, or, or...at least not for this. I am also relieved that, after 3 days of avoiding it, I finally put words to a thread here, maybe a rambling and not terribly coherent thread, but my, I have MS thread. Well, that wasn't too bad, reading it may be harder.... Note: I will probably cut and paste most of this for the other site also, I haven't the energy to try to do another one from scratch. It feels odd, but I mean no disrespect to any of you, or to the other board. It is just a matter of "resource and energy management."
__________________
tante |
|||
Reply With Quote |
"Thanks for this!" says: | hollym (04-10-2008), sugarboo (04-10-2008), Twinkletoes (04-10-2008), Victorya (04-10-2008), weegot5kiz (04-10-2008) |
04-10-2008, 07:45 AM | #2 | |||
|
||||
Wise Elder
|
Welcome to the next dimension in the exciting world of neurology patients, Tante. It's just a ton of fun, huh?
__________________
—Cindy For every day I choose to play, I set aside a day to pay. —AMN "Sometimes plastic wrap just won't cling, no matter how much money you put in the meter." —From the Book of True Wizdom |
|||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008) |
04-10-2008, 07:52 AM | #3 | ||
|
|||
Senior Member
|
Tante,
If you can, put that Dr. House on your neurological team, no matter what it takes! She sounds like a winner. -Vic |
||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008) |
04-10-2008, 07:49 AM | #4 | |||
|
||||
Elder
|
I find you credible.
What a long, frustrating trip you've been on! My Dad was first diagnosed back in the early fifties or thereabouts. Back then, a diagnosis was "We think you probably have MS." They took it back, gave it back, said "Well, hmm, maybe it isn't MS since you aren't crippled yet", that kind of thing. It finally stuck, but it really messed with his sense of who he was. I've read many posts from people in limbo who are almost defensive about their symptoms, perhaps because "outsiders" feel that symptoms are somehow less real without three definitive diagnoses from three different MS specialists...or something. Anyway, NOW who's rambling...
__________________
* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
|||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008), Twinkletoes (04-10-2008) |
04-10-2008, 07:55 AM | #5 | |||
|
||||
Member
|
Hopefully you are now on the journey forward for help and understanding with your doctors.
Glad you are here.
__________________
If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen. --Loretta Girzaitis Trust that your abilities are stronger than your disabilities - Maxene Kupperman-Guinals |
|||
Reply With Quote |
04-10-2008, 08:35 AM | #6 | |||
|
||||
Grand Magnate
|
Sorry that you had to go through such a long journey to find the answers you needed. I hope you feel better soon and can start your treatments.
__________________
Strength comes in all types of packages, even those you don't expect Dx'd MS 2007, Fibro 2009 |
|||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008) |
04-10-2008, 09:29 AM | #7 | |||
|
||||
Wise Elder
|
Quote:
I am so glad you found "Dr. House." What a blessing. I'm sorry that you had to go through a lot of this just to go back to where you started 30 years ago. Thank you for sharing your story with us. I am glad that you did and I hope you continue to share with us. |
|||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008) |
04-10-2008, 10:19 AM | #8 | |||
|
||||
Legendary
|
I think that typing it and getting it out is a relief in some way. Thank you for sharing this, Tante. I hope you feel better soon and know that your'e amongst friends and a very caring community here.
On a side note~~ My cousin was DX'd w/MS for 10 yrs. Her Neuro passed away, so she went to a new one, went through the gamut of tests... NO MS! She has Fibro. So, guess it can go both ways. I'm just glad you got the answers you need to move forward. Take care of yourself.
__________________
DM . |
|||
Reply With Quote |
"Thanks for this!" says: | tante (04-11-2008) |
04-10-2008, 10:24 PM | #9 | ||
|
|||
Member
|
Wow, you've had an amazing journey.
So what was the new information (or new doctor?) that spurred this new (and hopefully final) diagnosis? Did you have a new MRI, a new LP, a new doctor, or what? (Sorry I haven't kept up here well.) Ah, as I said in another post just now (to bobcats), you can knock me over with a feather! I didn't believe it was possible for longtime limbolanders to get a definitive diagnosis. (Um, I still don't... you must be in a tiny percentage... or else someone's going to take back your diagnosis tomorrow, or next week, or next year... just so's not to make me a liar! ) Anyway, tante, very best of luck to you with treatment and control of your symptoms. I hope you have no more of the cancer-junk scares and that type of stuff. Take care! Nancy T. |
||
Reply With Quote |
04-11-2008, 06:50 AM | #10 | |||
|
||||
Member
|
Quote:
DM, you are right about the relief, the sharp edges of shock and disbelief are dulling as I write...not that I experienced either about having MS, but about having a diagnosis that should finally hold up and allow me to get treatment. I actually cried in the last MRI, silent tears rolled down my face...there was going to be no wait time on the GAD, and I was scheduled for an OPEN machine....my last hopes were vanishing, so I was really shocked lesions finally showed. As for your cousin, and the two are mutually exclusive?? Is she comfortable with the rule-out? The idea of changing Dr.s is scarey. I have, these past few months, been putting together thoughts "In Defense of Being Undiagnosed." Bad timing to mention it now, and it has nothing to do with the callousness with which so many limboers are treated by the medical profession, nor the horrid emotional roller coaster one is on, but I learned last year of medical "red herrings" and of syndromes and smoldering illnesses and odd diseases, and of rxs for one thing that would be awful if you really had the other.... I learned that there really are times when, even with 5 O Bands, positive Evoked Potentials, and history and symptoms out the ying yang, enough to satisfy the McDonald criteria, it might be something other than MS. But, then I learned of the relief when the ride ended.
__________________
tante |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
newly diagnosed | New Member Introductions | |||
Newly Diagnosed | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Newly Diagnosed with TOS | New Member Introductions | |||
Newly diagnosed | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Newly diagnosed but.... | Bipolar Disorder |