My trip to the neuro

Jenny R. said...
Well I went for my follow-up appt today at the neuro.  She is sending me for another brain MRI, since it has been a year since the last.  I also have to get some more bloodwork done, ESR, Hemoglobin, T3, T4, TSH, Lyme titers again, and metabolic profile.  I felt so rushed.  She wanted to send me for a spinal tap, I asked about the EVP, she said that usually they don't pick nothing up unless there is numbness, not for the bug crawling feeling that I have had for 6 years now.  Oh yeah, gave me nortrptyline (spelling?), can't read her writing, sorry.  I thought that the EVP should be done when MS is suspected.  I asked her what she felt was wrong with me, she said, post viral.  Maybe small fiber neuropathy, might not ever know the cause.

I feel like she is putting me aside, do you think I should find a new neuro?

She doesn't know what this may lead to someday, she never even mentioned another brain MRI, I brought this up to her, and she said ok.  But doesn't believe in EVP, SSEP, but wanted to rush a lumbar puncture.  Does this make sense?

Sorry for the whining, I'm frustrated.

Thanks, and have a nice day

Jennifer

EVP's indeed won't pick up sensory stuff, like the "bug crawling" feeling. They're designed to pick up nerve transmissions that are affecting muscles -- and the "bug crawling" feeling isn't that.

With all the other stuff coming back "normal", seems to me that a spinal tap is indeed the next step toward trying to figure out what's wrong with you.

And indeed -- you may never know. Viral (and some bacterial and other) infections can cause damage to your nervous system and not be traceable, once they're gone.

I think your doctor is telling it straight, doing the proper tests, and trying her best to figure out what's wrong. You need to be willing to undergo what tests she's wanting, to help her do her job.

Jenny R. said...

Uppitycats, thanks for the comment.  I only ever had 1 brain, and 1 c-spine MRI, I thought that most neuros repeat these every 6 months to a year.  She already told me that even with a positive spinal tap I couldn't be diagnosed unless I had lesions show on MRI.

I told her I was concerned about MS cause my gram had it, diagnosed at 60.  This was my first visit, 9 months ago.  She asked me how she was diagnosed, I told her by LP.  She then turned around and said thats impossible, she probably had something else wrong with her because of her age. 

Thanks for your help and cooperation

Jennifer

Why? Because a positive spinal tap shows LOTS of things..besides MS. And what might be ailing a patient might NOT be MS.  We've had this discussion before -- I agree with your doctor -- given your grandmother's age, it is really really unusual for her to have had MS.  You said I think that there wasn't an autopsy done upon her death, so there really is no way to know *for certain* that she had MS...just a doctor's opinion that what was ailing her was MS.  Again -- if your grandmother had a "positive" spinal tap - -it could have been "positive" for a host of ailments, including MS...but other things, too.

You might want to ask your doctor something like..." OK...if I agree to submit to a spinal tap, and it too comes back negative, THEN what? I'm still experiencing all these sensory things...nothing is coming back pointing to anything; where do I go from here??" and see what she says.

But again...she may also be right. Sometimes there really IS no definitive answer; all that can be done is continue to watch and wait, and MAYBE over time, something more will develop. Or maybe not.  Your grandmother lived until 60 without a diagnosis....maybe that'll be what could happen with you, too.