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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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