Just diagnosed after 15 yrs, but what to fear most?

[worldexplorer]

I am new to this forum, but have gotten a wealth of information over that past 2-3 weeks from reading all the posts and seeing the valuable insight so many have to offer. Although I unknowingly have fared well over the past 15 years, compared to many, with this disease, I know the road may become harder now and will need to rely on the insight of the survivors to get me through.

15 years ago I had profound sudden sensorineural hearing loss that was mostly recovered with aggressive treatment. MRI found 5-6 lesions with subsequent 4-year follow-up for "possible MS" by neuro and no new episodes or lesions. When neuro left to become medical director at Genzyme, he said he could not confirm MS due to lack of progression. My GP had all the records, but never suggested I needed follow-up despite later issues that, in hind sight, were most likely MS related Those included neurogenic bladder, which improved after about 9 months, bouts of numbness in legs she told me to wait out, tremor that continues, bowel issues diagnosed as IBS, fatigue, stiffness in legs, etc. Not to mention severe depression.

About a year ago I developed stabbing eye pain that got progressively worse and recently started getting blurred vision. My ophthalmologist said he felt sure it was related to my history with demylination and urged me to see a neuro and get an MRI ASAP. Because I couldn't get an appointment for 3 months, I went to my new GP to see if she could expedite. She ordered the MRI immediately and called 2 days ago to say that the MS was confirmed. But, in addition, I had serious cervical stenosis that may need surgery, as well as cysts on my sinuses that may be causing the eye pain and blurred vision, not the optic neuritis that they originally suspected.

It looks like I will not be seen by a neuro at a Boston MS Center until end of July, despite her urgent request. I am concerned by, and don't understand the relevance of, the findings "Moderate T2 hyperintensity is seen in the periventricular white matter of both cerebral hemispheres." Previous MRIs noted the number and shape of the lesions, but this report makes no reference to those things, even though the "impressions" state that it is most likely due to demylination. From what I've read, it seems more consistent with cerebrovascular conditions than with MS.

I do have an appointment with the head of orthopedic surgery at a top Boston Hospital next week, which the GP arranged, but from what I read, I think I should be seeing a neurosurgeon, so I'm hoping he'll refer me.

Based on the MRI, I'm wondering if I should be even more concerned about the sinus cysts and "sphenoid thickening." I had sinus surgery about 10 years ago, but don't even have an ENT. My GP is prescribing Augmentin to hopefully address a possible sinus infection causing these eye issues, but it sounds like an infection of the sphenoid sinuses is very hard to treat, often needs surgery and can be very dangerous if left untreated, but I'm not sure if I'm making too much out of it.

I'm not sure what to be most concerned about. If anyone can help interpret the MRI, I posted it below:

INDICATION: 51-year-old with ocular pain bilaterally and
demyelinating disease.

COMPARISON: 11/24/2004.

TECHNIQUE: Multiplanar multisequence MR imaging of the brain,
cervical spine, and thoracic spine was performed with and without
8 mL of Gadavist.

FINDINGS:
Brain: The ventricles are normal in size and configuration for
age. Moderate T2 hyperintensity is seen in the periventricular
white matter of both cerebral hemispheres. No cortical infarct or
extra-axial collection is appreciated. No signal abdomen is seen
in the brainstem or cerebellum. Normal flow-voids are seen in the
major intracranial vessels. No restricted diffusion or abnormal
enhancement is appreciated. There are no abnormal foci of
susceptibility. Moderate retention cysts are seen in both
maxillary sinuses. There is mild frontal, ethmoid, and sphenoid
thickening. There is mild nonspecific opacification of the
inferior right mastoid air cells.

Cervical spine: There is mild retrolisthesis of C4 on C5. There
is moderate C4-C5 and mild C3-C4 disc space narrowing with
moderate edematous endplate changes at C3-C4 and fatty endplate
changes at C4-C5. Focal fatty change is also seen along the
anterior inferior margin of the C2 vertebral body.

There is no significant disc disease at C2-C3. There is mild
right-sided uncovertebral spurring and mild right foraminal
narrowing.

At C3-C4, there is a mild central disc protrusion/osteophyte with
mild central stenosis. There is bilateral uncovertebral spurring
with marked right and moderate left foraminal narrowing.

At C4-C5, there is a mild retrolisthesis and disc
protrusion/osteophyte resulting in mild to moderate central
stenosis. Bilateral uncovertebral spurring is appreciated with
moderate bilateral foraminal narrowing, right greater than left.

At C5-C6, there is a mild rightward disc protrusion and
osteophyte with mild central stenosis. There is moderate right
foraminal narrowing.

At C6-C7, there is a mild central disc protrusion. There is no
significant central stenosis or foraminal narrowing.

At C7-T1, there is a mild central disc protrusion without
significant central stenosis or foraminal narrowing.

There is mild ill-defined T2 hyperintensity in the cord at C4-C5
without enhancement. These findings are nonspecific and may be
related to neurocompressive effects versus chronic demyelination.
The degenerative changes are new and or more marked in the
cervical spine relative to 2004.

Thoracic spine: The thoracic spine is normal in alignment. At
T8-T9, there is a mild right paracentral disc protrusion without
significant central stenosis or foraminal narrowing. At T11-T12,
there is a mild central disc protrusion without central stenosis.
No definite signal abnormality is seen in the thoracic cord. No
abnormal enhancement is seen with contrast.

IMPRESSION:
1. Moderate T2 hyperintensity in the white matter of both
cerebral hemispheres without restricted diffusion may be related
to the history of chronic demyelinating disease.
2. Degenerative changes in the cervical spine most marked at
C4-C5 with mild flattening of the cord and mild to moderate
central stenosis as well as ill-defined T2 hyperintensity in the
cord without enhancement. The degenerative changes are new and/or
more marked relative to the prior study and the signal
abnormality in the cord may be related to neurocompressive
effects or chronic demyelination without enhancement.
3. No evidence of demyelinating disease within the thoracic cord.
4. Mild degenerative changes in the thoracic spine as detailed
above.

Thank you in advance for any insight you can provide.

[ElliotB]

You should probably see an ENT for your sinus issue and have an expert tell you what your MRI results mean- the doctor who ordered the MRI should have the correct answers for you.