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04-11-2008, 11:24 AM
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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 |
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| "Thanks for this!" says: | tante (04-11-2008) |
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04-11-2008, 01:39 PM
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Senior Member
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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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Dx: CNS Demyelinating Disease (2005) Take me back to days full of monkeyshines Bouncin' on a bubble full of trouble in the summer sun Keep your raft from the riverboat Fiction over fact always has my vote And wrinkles only go where the smiles have been... Jimmy Buffett from "Barefoot Children in the Rain" . |
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04-11-2008, 03:27 PM
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#3 | |||
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Quote:
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. 
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tante Last edited by tante; 04-11-2008 at 04:56 PM. Reason: better spacing, easier reading, clarity |
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04-11-2008, 06:06 AM
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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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tante |
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