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Old 02-16-2009, 01:58 PM #1
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Default Thank you! And a vent...

I just wanted to thank you all for your suggestions on how to get through the MRI I had last week! I did it!! I made it through.

I just got my results and they were negative for MS!!! I'm so thankful, and I'm so sorry for the rollercoaster you all are on with this terrible disease! The nurse didn't talk with the neurologist before calling me back as she said it was very clear in the report that I don't have any lesions or evidence of de-mylenation (sp?), but that I do have a large cyst in my sinus...she said "And this was a brain MRI, not a sinus MRI, so I'm thinking it must be a pretty significant mass if it showed up on your brain MRI." So I asked her about my symptoms and the "next steps", and she said the neuro's notes said he didn't want to see me back unless something changes. REALLY?!?! I'm confused, grateful, but confused. He made it sound like there would be other tests he wanted to do if my MRI came back negative. I don't know what I'm supposed to do now. She chalked it all up to Fibro, sensory issues, bowel and bladder control issues, etc, she said it certainly sounded like MS, but it must just be the Fibro. I feel like I just got dumped.

Thanks for listening!
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Old 02-16-2009, 02:17 PM #2
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Severe sinus issues are not unusual with showing up on brain MRI's. All of my reports have little footnotes of my chronic sinus issues. I've had allergies all my life, so I'm not too surprised that they show up.

Sorry to hear that the neuro seemed to dump ya after it seemed he suggested that he would continue with tests to help get to the bottom of what's going on.
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Old 02-16-2009, 02:19 PM #3
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So, Good news, Bad news.

Good news: No MS!

Bad news: What now?


My son has a cyst/polyp in his maxillary sinus (under your cheek) that (at least 15 years ago) they didn't know how to remove. I would have thought that by now technology would have an answer.

Well, glad you at least don't have MS. I hope you get some help soon to unravel your mysterious symptoms and their cause.
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Old 02-16-2009, 02:30 PM #4
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please get a copy of your mri films and get a consult with an ear, nose & throat specialist, and/or check with your pcp. you should be followed up for whatever they saw in your sinuses.

i'm glad the mri was negative for lesions. however, i'd keep a sx (symptom) journal for awhile so you can tract your problems. sometimes it takes yrs for lesions to appear so if you are very symptomatic it's worth keeping an eye on.

keep in touch with your pcp too. i don't quite remember your story and i don't want to scare you. but don't give up if something isn't "right". and chalking everything up to fibro can be a cop out.

drs tend to need to see physical, clinical, lab or mri findings before they will commit to a dx (diagnosis).

feel free to stay here and keep us updated.
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Old 02-16-2009, 04:02 PM #5
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I agree with NurseNancy, keep up on a symptom diary for the weird symptoms, and get the sinus thing checked out.

When I had my brain MRI, they blamed the little "dots" they saw on my MRI on migraines. Said they didnt need/want to see me again unless something happened. (I didnt have to wait long..."something" happened about 4 months later, and now I have regular appointments with that neuro)
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Old 02-16-2009, 04:06 PM #6
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Hi! I agree w/what Judy (Nurse Nancy) said and she's very wise in stating that you should see an ENT w/your records. My DD's neuro said that her sinus's were completely blocked after viewing her MRI, so sent her to an ENT. Come to pass, she didn't have a blockage, just severe allergies. So, the interpretation of the MRI can be read differently. I'm glad for you that they don't seem to think it's MS, but I would still try and figure out what's going on. Good luck and keep us posted.
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Old 02-16-2009, 08:12 PM #7
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agree with others, sx list or log is good to keep because somethign is going on, I dont know if bladder issues at all are fibro??!!

Also the Ears nose throat dr would be idea, check with your primary doc..

I had brain MRIs many times, I am undx, but yes they have told me in report of sinus infection possible once so easy to see those things.

hugsssss and good luck dear, sarah
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Old 02-16-2009, 08:53 PM #8
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It's good news no MS but it's bad that you didn't get any definite answers. I hope you get some soon.
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Old 02-16-2009, 11:14 PM #9
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Hey well, it could be worse it could have been ms AND the sinus cyst. I agree you should find a good ENT guy. My DD is seeing one and he is GREAT! I wish he was a neuro. If you are from VA I will be happy to give you his info. The man is a god send who has seen us through some very scary times with the little one.
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Old 02-17-2009, 08:46 AM #10
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That is good news about your MRI.

You have gotten such great advice and I can't add much. As for the cyst, I have one in my sinus and it always shows up on the MRI. Going to an ENT is a good suggestion. I have had the cyst for years and years. I use a cortisone type nose spray and do my Neti pot daily. That seems to keep it under control. The Mayo Clinic website has some great information on cysts in your sinuses.

Wishing you the best of luck.
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