We are moving right along. I recieved my new MRI w/out contrast results. The radiologist saw the same thing my old neuro saw. The burdon of lesions that my new neuro was straining to see, zooming in and out and looking to his assistant as if he was asking if SHE could see anything and then turning around and asking me what my old neuro told me about what she saw on my MRI's. Jeeeeeeeeez, that rattled me a bit. But alas, the new radiologist saw the lesions on the new MRI that my old neuro saw. I feel better now. He was very specific and detailed in his description of what he saw as well. And he stated all were consistant with the dx of MS. One would think I should be sad. Nope! In fact, I'm relieved! Lol. It's proof that I'm not crazy. And that my old neuro isn't crazy either!, lol. (maybe I shouldn't have switched????)
So now my new neuro follow up is moved to Nov 19th since I couldn't get into the Opthamologist until Nov 5th. AAAAAND, I also found all my old lab results that were missing from my records!!! They were removed (in error?) from my electronic chart as I explained previously. I found them because my new lab results from 2 wks ago (?) JUST NOW showed up in my electronic chart. I saw that they were run through an outside lab that I was familiar w/ and have a log in with. Guess what was there? ALL of my initial bloodwork (that was just re-done due to it not being in my record). I printed out everything and will bring it with me next month.
I am also going to call my old neuro to see if they can mail or email me a copy of the results of my neuro-psych testing (can't remember what that's called). And my old opthamologist testing results. How none of this was sent w/ my records is beyond me.
Stay tuned!!!
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cassielynn71
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Gosh, what a circus! So. You have been officially officially diagnosed and currently wear the MS crown. Nothing more to do now except get on with life?
Also, that’s hilarious that the specialist can’t see what the neuro with more clinical experience saw, and it’s normal that they can’t see what the neruorad can see, that’s why they are so special. This is also why I tell people to read the report for themselves. (Now, if your neurorad is lazy and doesn’t say anything in the report, like one I keep getting, that’s another issue 🙄)
Well....it's not official official yet. The new neuro hasn't had his say about it. Just the new radiologist. I'm hoping the new neuro doesn't pull out a trump card and disagree w/ the radiologist. Doesn't it sound funny hearing someone say they hope they DO have MS????? Lololololol. This entire 'adventure' really has been like a trip to the circus!
I hope you can find a work around with your neurorad! Do you have the option of where you go to get your MRI's? I have about 1/2 a dozen different places I can choose from. I changed to a new place that is closer to my new house. I am glad I did now. For the mere fact that they were sooooo specific and descriptive of what they saw. I was very lucky. It could've gone the way yours apparently has. So sorry you have to deal w/ that.
Also, he was so specific that I was able to look up what could be affected by this one fairly large leasion by the area he described it being in. My symptoms make so much sense now! It's an area that controls balance, gait, muscle motor function, emotions and a few other things that I can think of (probably memory! Lolol)
My vision is such a mess so I'm hoping they can report something to back up my last bout of Optic Neuritis and the seemingly permanent change in color vividness out of that same eye. Wish me luck! And the same to you. I hope you have the option of a different location for your MRIs.
Well, it’s not much of a card if two others disagree and your other tests to confirm his suspicions are normal. Not at all, that’s not the same as wanting MS, which none of us do.
Heh, yes! So here’s how my first work around went: changed hospital systems to the university and had to pay $2500 extra for them to do the scan because our insurance, which is through the same system because my husband works for them, but does not pay the full amount at their own facility. The neurorad reading fee was the same. So, next time we will go back to the competing hospital system and then if I get a lazy turd again, we will ask our neuro to get one of the neurorads from the other system to read the scan as a consult and pay just the reading fee. Or I’ll be super lazy about my own disease and say oh well, which is usually an option I don’t go for.
GL! I’ve had it in both eyes, and have central vision loss and sometimes pain in one eye...the other has a slight color change, but enough to fail a color blindness test. Both have slow reflexes, and one has had a babinski reflex and pale yellow nerve reflection since I was 21...it’s been a long journey! It’s been a lot of shoulder shrugging and telling me I was fine over the years, so I’m glad to be able to be diagnosed and on the appropriate treatment! I’m glad to be out of the little town all this started in too.
Lolol, Yah, I think that's it really, being glad for a dx after all the years of shoulder shrugging. It's quite maddening and discouraging to have years of shoulder shrugging!
I hope you have better luck with the other hospital but it sucks that you have to spend the money to "play the game" they've set up. What a pain in the *ss and the wallet!
BOTH of your eyes??? Lord, one is bad enough. And I don't know if its the disease or age or what but my "good" eye has changed so much in the last 7 months that nothing is clear when doing the eye test w/ my glasses on. I can read more lines than w/ my bad eye but none of the lines are clear anymore. Without my glasses I can't even see the chart! Lol. And to think, just 5 years ago I didn't wear glasses at all. Grrrr.
Yes, and the sad part about diagnosis limbo is the relapse that happens during the wait...will it cause permanent damage a DMT could have prevented? Thank you! I’m not sure when the next MRI will be for me.
Hah, yes! I’m a weird case. But...my Copaxone nurse told me (she could have kept her mouth shut, her words have haunted me since) a story about how her patient who went blind in both eyes from ON episodes, gets her husband to do her injections. So it’s not that weird, but I’m hoping the Ocrevus tames the MS dragon.
Exactly! It’s crazy to look back and think, wow, I never use to...use that, be like this, etc. Even after being diagnosed, there are things you just can’t see coming.
I was diagnosed in july and it was stressful getting all the testing done and the results. I finally got all the mri cds and results in one place and keep them in a folder. I went to multiple ms specialists for opinions. Hopefully you can get all your results soon and start on your treatment. Hope all goes well for you.
I am still currently on my Copaxone. He didn't want to me to stop any treatment until all my new testing was done. And honestly I almost did stop on my own, out of the frustration of possibly being misdiagnosed. I'm glad I didn't now!
I understand being almost glad about the MS diagnosis. I feared being "undiagnosed" when I went to a specialist. It was hard at first to explain why I felt that way because it sounds crazy. I think the main reason was that I dreaded having to go myriad tests again, perhaps another lumbar puncture, etc., only to have the newest tests reveal that I really did have MS, or even yet another diagnosis to deal with. I think we come to terms with our diagnoses, and to have to come to terms with something else seems like a huge burden.
I'm glad you are at a point where you can get on with how to deal with this thing, how to treat it, and how to adapt to changes.
Thank you for the update and the reminder to keep hard copies of our MRIs and all tests.
sounds like you are getting it done, remember ask for the strongest medicine you can and live with the side effects they all have side effects. I think the visual evoked Potentials are what you were talking about, VEP good luck
Apparently Avonex, Copaxone and Aubagio are all they recommend because of a little Cancer run in I had a few years ago. And a couple other medical issues I have that prevent me from taking a couple others. But that's fine with me. I haven't had any serious concerning side effects from the Copaxone for the last 3+ years, however there was discussion w/ my previous neuro and a quick mention at the end of my first appt w/ the new neuro about switching me to Aubagio. I'm game for anything that helps.
good luck be aware that Interfron 1A Avonex\Rebif are different drugs than Interferon Beta 1b, I got caught on that a few years back. I am sure you and your doctor will make an informed c choice. Merely insure that you never stop taking some form of Disease Modifying Therapy.
By the time I got my RRMS diagnosis after multiple doctors and misdiagnosis, I was greatly relieved! My imagination had run wild and I was convinced I had an inoperable tumor so the MS diagnosis was a relief and something I could live with.
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MRI last Thursday 
Eye Drops
DO MRI STUDIES ACCURATELY REFLECT YOUR DISEASE STATUS?
