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Newly Diagnosed....Again.
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." :rolleyes: |
Welcome to the next dimension in the exciting world of neurology patients, Tante. It's just a ton of fun, huh? ;)
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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...:o |
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. |
:hug: 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.
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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.:hug: 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. :hug: |
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! :D ) 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 Quote:
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. :) |
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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.:) |
Hugs~!
I am so glad we can be here when you received your diagnosis. ANd for a brief, fleeting moment it gave ME hope as I am 59 and STILL be diagnosed.
I do have docs who are trying. But now I think they are ONLY seeing a certain symptom and NOT the whole picture. Take care and please know that WE care. It was worth it!! I'll support YOU~! Warmly, Jan |
What I find interesting about this is that you went so many years with a clear MRI.
I had one neuro tell me that often people have subclinical damage (i.e. damage too small to be seen on MRI) that results in sx and even neuro signs on exam. He said patients can go years and years with an unchanged MRI and then suddenly, the damage shows up. Then, I had another neuro tell me that because my MRI hadn't changed in a year, that I don't have MS. He seemed to think it was a one time event that did all this damage and that I should just get used to it. My present neuro seems to be agree with the first one and is waiting for an MRI change to give me an official dx. He acted like it is a foregone conclusion that it will change eventually, but there hasn't been any significant change in 2 years or more (I have lost track). My MRI is not clear by any means, but I don't have any periventricular lesions - just about a dozen in other places. I have seriously doubted that any change is possible after all this time, but you are proof positive that it can take many years sometimes for the damage to show up. |
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holly, Or many years to get the most curious and capable tech deciding where to do the slices as he images your brain. Seriously. I think that had a major impact on the results this time, that and the fact these were the newest machines and imaging programs in town...which is why I specified that I wanted mine done on them rather than at the centers where I had gone before. BUT, the orders weren't specific re: what to look for, and the tech was obviously disconcerted that he was looking for demyelenating lesions, probably thought stroke or vascular problems....I was scheduled for an OPEN MRI. That couldn't be changed and I was heartsick, but at least the tech, after talking with me, knew what kind of protocol to follow, I seriously doubt many, if any have ever bothered in the past. Of course, supposedly something like 5% will never have lesions show on MRIs, but I wonder whether that is due to the nature of the brain or the quality of the image and the tech's ability. |
jan
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Jan, one thing I learned this past year is that DR.s not only will focus on a specific symptom, they will often see and fixate on another Dr.'s "impression" even after it is contradicted by tests. Example: Mayo referral's impression included Bilateral Carpal Tunnel (he was convinced of this) and Peripheral Neuropathy. Both were ruled out...had been repeatedly in the past also, BUT, the DR.s after that saw that and that's what they said, "well you have.....PN and CTS." Fortunately, to save time and trouble, I carry my own annotated copy of relevant records and could pull them out and say no, I don't, here are the Mayo EMG/NCV results...saves the Dr time, lol. I had this happen too often, and with good Dr.s, but the more docs and tests and referrals are involved, and the bigger the time gaps between appointments, the easier it is for them to miss a page in your records, to inadvertantly fumble the ball, but that ball is our brain so we have to pick it up and run with it. We have to not only have our own copies, we have to have read them BEFORE we see the DR. in case he hasn't seen them (like my 5 O Bands) so we can gently and respectfully get them SEEN!! ;) Back to seeing symptoms though, that paraprotein, lambda light chain thingy is what did me in last year, so I know what you mean...docs saw that and some of them forgot the big picture...ME! Don't let them forget you. :hug: |
Tante:
Thanks for posting this. After 30 years since first symptoms and still in limbo it's not hard to relate. You were credible all along. The doctor who dx'd you 30 years ago before MRI's and all the technology was credible too - back then doctors relied on the patient's accounts, signs and symptoms and their gut reaction. I'm not too far behind you in age - still waiting to get some credibility myself. :( It makes perfect sense that it was a relief to get confirmation. Best of luck choosing your course of meds and treatments. |
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