359574 tn?1328360424

It's still transverse myelitis

I saw the MS neurologist, neuropsychologist, and nurse practitioner today.  There is an entry in my journal with the prior stuff.

No new or enhancing lesions anywhere.  The few punctate ones on my 3T brain MRI don't show on the 1.5T one taken with MS protocol, and the neuroradiologist doesn't mention any.  I still have the two in my cervical spine.  Nothing interesting in my thoracic.  The nurse practitioner went over both sets and showed me what the neurologist and radiologist had been talking about.

My SSER is normal.  The scars in my spine aren't bad enough to affect it.  My bloodwork for inflammation and neuromyelitis optica is normal.

There is no explanation for my eye problem.   I have a scotoma (small) that's always present, and sometimes I see ghost images of things when I look from one place to another.  My retina is just dandy.  I'm to keep track of the "bad eye days" to see if there is a pattern.  Maybe it really is a migraine, just like they told me 9 years ago.

My extreme fatigue is being chalked up to the sleep apnea, which I hope the CPAP will fix.  It will also cure my high blood pressure, impaired fasting glucose, obesity, nighttime urinary frequency, wrinkles, zits, dull hair and yellow teeth, and give me the ability to tap dance and play the piano.

The paresthesias, and my  urge incontinence and constipation are being attributed to the damage in my c-spine, which is permanent.  Good thing the symptoms are slight.

He had me do the backwards tandem walk with eyes shut, and I can actually do a few steps.  Gets better with practice.

I did the MSFC (25-foot walk, 9-hole peg test, paced 3-second serial addition) for a baseline with the neuropsychologist, and all was good.

I'm to go for a follow up visit to the psychologist and the nurse practitioner in January.  Meanwhile, now that I have been told by an actual MS specialist, following a truly thorough exam, that I don't have it, I'm going to believe it.  I'm counting on the CPAP to improve my energy, and since my hubby has now been told that he's also prediabetic, we're not going to have bad things around the house any more.  We're probably getting bikes, too.

Side note--cool sign on the window at the MS specialist's office:

                          "Brains are soft.  Helmets are hard.  Use both."

So, that's my good news.  Now I get to amuse myself for a few hours before going waaaaaay back across town to his office for my CPAP sleep study.

Happy Halloween, everybody.
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359574 tn?1328360424
Home from the CPAP sleep study.  You're all so right, it makes a world of difference, and it's not nearly as weird-feeling as one might first think.  I initially tried the nasal pillows, but it felt like when I laid on my side, it crimped the mask and decreased the airflow.  I love the feeling of having loads of cool, fresh air coming in, so at least for now, I guess I'll go with the mask.  Maybe later I can graduate to the pillows.
Helpful - 0
198419 tn?1360242356
Hi there,

My goodness.  Well, I know so little about transverse myelitis.  I didn't know it was permanent.  What causes it hbanan?  Do they explain this?  Do they say too that you have all of these symptoms from the TM and they are to be permanent too?

Oh, my.  I hope you do get relief from the CPAP though, so very very important for you, your heart, etc. Heard it takes some getting use to.  

Let me know how that machine works on the zits and dancing, people want to know.  Boy, oh boy, least you have a good sense of humor over it all.

Helpful - 0
539156 tn?1281818356
So glad you like your cpap!!!  It really is a wonderful thing. Get some cotton make-up remover pads to use under the straps if you wake up with marks on your face.  
You go girl,
Mary Kay
Helpful - 0
359574 tn?1328360424
My TM isn't at all classic.  It's supposed to come on strong, starting with pain in the back and often progressing within a few hours or days to total paralysis below the level of the inflammation.  That's when it's truly transverse, going across the entire cord.  It's also usually found in the thoracic spine, and the lesions are longer than a couple of vertebral segments, and often single.

Partial TM is less serious.  It's also more frequently the first attack of MS-multiple small discrete lesions, in the cervical spine.  That's why I didn't initially buy my previous neurologist's opinion that it's a one-time episode of TM, and why the new MS specialist bothered with all the additional testing.

As far as a prognosis goes, it seems to be split evenly between the three possibilities of never get better, get better but have lingering problems, and complete recovery.  The improvement can take up to two years, but you usually get what you're going to get in the first 6 months or so.  My troubles started about a year ago and have gotten only a little bit better--more of a nuisance than much else.

I really don't know why he wants me to come back in January, but it's nice to know he's keeping an eye on things--just in case the other shoe decides to drop after all.  He's also my sleep specialist.
Helpful - 0
359574 tn?1328360424
This is weird.  The neuro-opthalmologist wants to see me for a follow-up.  I thought he was done with me.  I scheduled it for late afternoon after my morning colonoscopy next week.  That should be a fun day from head to..well, not toe.  I'm already off work and have my dh available to haul me around.  I should be plenty alert by then.
Helpful - 0
198419 tn?1360242356
Hey girl,

So much to contend with but you understand it so well.  You ever consider writing an HP up on TM?  I think it would be a good addition.

I'm glad the neuro-optha wants to follow up, must be a keeper!

Helpful - 0
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