Merry Christmas and Happy Holiday's everyone. I haven't been around for a while since my diagnosis changed to NMO but I am once again a walking question mark. I recently had a lumbar puncture and I'll have those results when I meet with my new neuro on Jan. 4th, hopefully definitive answer are close. I do know that the test came back abnormal but that was all the info the nurse could share with me over the phone.
My new neurologist (Whom is highly respected and known within the neurology world. I'm not dealing with some quack, I've had my fair share of those) said to me, "We need to figure out what that is on your brain". Eekk! So my brain went straight to the worse possible scenario which was a tumor. I'm the type of person who researches the worse but hopes for the best.
Anyway, I'm not sure if any of you can offer your opinion on my image or if your familiar with brain tumors because you know someone or have had one yourself. But if your able to share your opinion on what you think the "white blob" on my brain may be, I would appreciate it. I'm sure you can all relate to the impatience I am feeling at this moment, I have 13 more days until I can get answers; but I'm really seeking the opinion of those of us who seem to be better at figuring out what is wrong with our body than most doctors.
And just so you all know, I know none of us here are doctors and I know what you say to me is just your opinion. Please know that I am not freaking myself out over this, I'm just preparing myself for what hopefully won't happen. But at least if I hear it, I'll have somewhat of a clear head and I can ask the necessary questions I may have while in that appointment. I don't like walking into appointments blind.
Here's the link to my image, I have more if anyone would like to see more. http://i93.photobucket.com/albums/l71/s ... 09cont.jpg
Thank you,
Sarah
Tumor or Lesion?
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LoveActually
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Hi Sarah, Merry Christmas to you also 
I'm sorry that you have to wait so long to get answers....waiting is always the hardest part 
and it doesn't help that it has to be over the holidays...
Like you said I can only offer an opinion, but my mother in law recently had a tumor removed from her brain and comparing your image to hers, they look quite different. (I'm not sure if they come in all shapes and colors?) Her MRI shows a mass that is not symmetrical (more of a blob) and it's a light grey matter, not white as yours appears to be. Wish I could offer more insight....
I hope the best for you, and wish you the best of luck for the New Year
Take care.
I'm sorry that you have to wait so long to get answers....waiting is always the hardest part and it doesn't help that it has to be over the holidays...Like you said I can only offer an opinion, but my mother in law recently had a tumor removed from her brain and comparing your image to hers, they look quite different. (I'm not sure if they come in all shapes and colors?) Her MRI shows a mass that is not symmetrical (more of a blob) and it's a light grey matter, not white as yours appears to be. Wish I could offer more insight....
I hope the best for you, and wish you the best of luck for the New Year
Take care.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt
This is just a GUESS on my part but I think a brain tumor is highly unlikely. I base this on what you have said in the past about your symptoms. My guess is that with a tumor your symptoms would not wax and wane.Stabilo wrote:Hi Sarah, Merry Christmas to you also
Like you said I can only offer an opinion, but my mother in law recently had a tumor removed from her brain and comparing your image to hers, they look quite different. (I'm not sure if they come in all shapes and colors?) Her MRI shows a mass that is not symmetrical (more of a blob) and it's a light grey matter, not white as yours appears to be. Wish I could offer more insight....
I hope the best for you, and wish you the best of luck for the New Year
Take care.
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LoveActually
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Thank you both. The concerning part to me is the loss of peripheral that I have now experienced twice and it happend simultaneously in both eyes, the headaches, vision issues with no real culprit (eyes look fine), short-term memory loss and my mood changes.
All my other issues are due to what is now being called a Syrinx in my spine. Fun!
Anyway, here's some more photos.
All my other issues are due to what is now being called a Syrinx in my spine. Fun!
Anyway, here's some more photos.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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LoveActually
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LOL! Thanks Lyon. My husband, in his best Arnold Schwarzenegger voice, keeps saying "It's not a tumor". LOL! I think he's more freaked than I am. It's weird to say, and probably weird to read, but at this point I just want it to be something. I'm soooo tired of being diagnosed with everything under the sun.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
Lyon wrote:Not to just throw things at your problem to make you feel better but what you mention could be nothing more than optical migraines which SEEM to be more common in MS, but I don't have MS and get them often as does my sister who also doesn't have MS. By the way, my wife who DOES have MS gets them often also and would be a wreck if she didn't have my sister and I to compare notes with.LoveActually wrote:The concerning part to me is the loss of peripheral that I have now experienced twice and it happend simultaneously in both eyes, the headaches, vision issues with no real culprit (eyes look fine),
I know you said you're not a wreck over this but breath deep and have a good holiday because the odds of your life NOT going to hell in a handbasket are drastically in your favor.
Agree.
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LoveActually
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No kidding bender. I know I have a Syrinx and either NMO or MS. My current neuro is questioning my NMO dignosis so we'll see. I always prepare for the worst case scenario but hope for the best. Worst case scenario -NMO, Syrinx, Brain Tumor. Right now I think my best case scenario is Syrinx and MS.
Two more days until I gets answers. I've never been so happy to see a neuro.
Two more days until I gets answers. I've never been so happy to see a neuro.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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LoveActually
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Good News
Saw my neuro yesterday and here's where we're at. (No Tumor)
- He doesn't think it's NMO (Devic's).
- I have two O-bands in my spinal fluid which makes him lean towards MS but he doesn't want to put that on me just yet. (Even though I've already been diagnosed with it once.)
- Syrinx is stable but need to monitor every 6 months.
- I need another brain MRI to see if I have any new lesions. If I do, he'll probably give me the MS diagnosis. If not, we will need to monitor that as well to see if any changes occur.
- Pain that I am experiencing is questionable. MS or Syrinx? He has given me some pain meds for neuropathic pain. If they work, great!
- My eye issues seem to all be caused by migraines. However I did have some slight color deficits on one of the tests that was performed.
So, migraines, syrinx, and possible MS. This is good news compared to what I was thinking. Seems everything was being lumped into one thing instead of what it really is, two, possibly three, separate neurological issues.
- He doesn't think it's NMO (Devic's).
- I have two O-bands in my spinal fluid which makes him lean towards MS but he doesn't want to put that on me just yet. (Even though I've already been diagnosed with it once.)
- Syrinx is stable but need to monitor every 6 months.
- I need another brain MRI to see if I have any new lesions. If I do, he'll probably give me the MS diagnosis. If not, we will need to monitor that as well to see if any changes occur.
- Pain that I am experiencing is questionable. MS or Syrinx? He has given me some pain meds for neuropathic pain. If they work, great!
- My eye issues seem to all be caused by migraines. However I did have some slight color deficits on one of the tests that was performed.
So, migraines, syrinx, and possible MS. This is good news compared to what I was thinking. Seems everything was being lumped into one thing instead of what it really is, two, possibly three, separate neurological issues.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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AlmostClever
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