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."

Welcome to the next dimension in the exciting world of neurology patients, Tante. It's just a ton of fun, huh?

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...

Tante,

If you can, put that Dr. House on your neurological team, no matter what it takes! She sounds like a winner.

-Vic

Hopefully you are now on the journey forward for help and understanding with your doctors.

Glad you are here.

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.

I read this wrong, you know a little cog fogging this morning. My eyes saw EPS but my brain said ESP! LOL. I didn't know ESP was a symptom of MS.

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.

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.

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.

Thank you all for the welcome, for your comments, and for finding me credible, .


Victor I wish I could put my "Dr. House" on my team, but she is a rheumie, and I haven't anything rheumatological....she just hung on to me because she was worried, in fact, she is the one that ordered the last MRI so it would be ready when I saw my Neuro, save some time.

I do have a wonderful neuro though, and an ophtholmologist who really is the one who pushed me to start seeking answers again, and has had me coded as an MS pt. all along.


AMN for some reason that had me grinning, thanks.


tkrik, misreading things, as you did with ESP, is one of my more enjoyable cog fogs...adds a little spice to my life.


B2Y Acch, I feel for your dad, and to go through all that and not even have treatments available as we have now, I am sorry.

Sassy and FinLady, thanks.