NMO or MS

[needanswers54]

Hi, everyone.

Well, today my neuro gave me the order to be tested for NMO.  This is the one I was to bonfire last year.  In the meantime, the neuro that diagnosed me with MS in October just called me and told me to call him back at my leisure as I left a request with his nurse for some more testing.  She told me that normally the insurance will not pay for testing mor than once a year.  I did not tell her that in the meantime I went for a second opionion while awaiting my appointment at the MS clinic months away.

The neuro that I did not bonfire asked me how I was doing a couple of weeks ago.  I told him that I was going downhill and that if things kept going the way they were I would be in a nursing home in a few years.  He told me that he thought that I was doing better and ordered an EEG to appease my whole-body tremor complaints.  The Hopkins trained neuro that dismissed my lesions all these years told me last year that perhaps it is MS.  Now I am being told by the office that I have a brain aneurysm and that the lesions that I was told were injuries or nothing important have suddently become just artifacts.  That neuro then said that they really did not know what was going on.  Perhaps it was just all "hormones"....Yeah, right.  (This after I told them that my OB was worried about cancer.  The neuro said why go looking for trouble.  Do not have any biopsies or D&C or surgery.  Neuro also said not to tell about my bladder frequency as the OB would really want to do surgery then.  Then after looking at my mountain of MRIs the neuro said that perhaps it was all just hormones.  Well, I did not know if they thought that I was cracked in the head or that they were telling me to go to the OB again as it might be cancer.)  Of course, I then find out that my possible transverse myelitis size lesion at C7 was high-lighted post-contrast on this last MRI.

In the meantime, I go to the neurosurgeon that decided to not do surgery after he realized that I was giving him MS symptoms two years ago.  Now he was to inject steroids into my neck.  I chose to wait until after I have the cancer issue straightened-up.

Monday of last week the "saved from the bonfire neuro" called me and told me that he thought that according to my recent MRI report that I was doing better.  But, to be sure to bring in some of my prior MRIs from the other hospital to compare.  He did not know that I knew about the possibly increased size and contrast enhancement going on.

Today I had to push him for an answer.  He said that he could not see any lesions on the other MRIs, but wanted me to have a blood test done for a diseases related to MS.  He said he was sure that I did not have it but, he wanted to be sure.  I asked him to tell me the name of the test.  He said it was complicated and he would explain it all to me if it came back abnormal.  He told me that it was run at the Mayo Clinic.  So, I figured it was the NMO test--which it was.  He was impressed that I had done that much reading.  He actually told me "very good" this time instead of the fact that I knew too much for my own good.

(to be continued...)

Torey

[needanswers54]

I only have a few lesions on my brain and they are further out from the center than would be expected with MS.  So, the neuros thought that they were due to my extreme migraines.  I do have cortical and central brain atrophy now (new, I think) and a largee borderline normal pituitary glands.  Now, the old neuro thinks that I also have a sarrac (spelling?) aneurysm in the brain as well.

Also, Devics's usually does not show up on the lumber puncture.  The neuro feels it is unlikely as I have lived with the disease for over five years.  But, I guess one really never knows for sure.  The doctors keep asking how I have kept my MS at bay as long as I have.  I told them that I quit work (and felt somewhat like I quit life as I knew it) and my symptoms had improved somewhat.  They told me that that was probably the smartest thing that I had ever done.

Thanks for all your support!

Hello, best wishes, and kudos to everyone!


XOXOXO

Torey

[santana8]

I have read a lot about  NMO and if I am right, and someone please correct me if I am wrong about this, but I believe that NMO has findings on the spinal cord and optic nerves only and not the brain. Do you have lesions on your brain too?  Like I said someone may want to check me on this one but I believe that is why I stopped looking at this as a possibility for me, because I have a lot of lesions on the brain MRI and normal optic nerves.

Santana

[Momzilla]

bump