have my neuro "perplexed" 3

[bettebelle]

The nurse prac  called me on the third infusion day to tell me that my MRI was pristine except for a few very very very small spots and abnormal thinning of the corpus??  She then told me that I had her very “perplexed” that she had never seen anything quite like this that the thinning could explain my cognitive problems and verbal issues and that thinning of the corpus was characteristic of MS, but it didn’t make sense.  She told me that they were going to have a conference about my case, but that they had order some blood work.
My blood work came back with an ANA tilter of 1:160.  They thought this was “typical of MS”.  All tests ran, normal. They had me come into the office to go over my brain scan where I met with the nurse prac.  She went over my brain scan to show me how it has slightly changed from last time I have some little tiny white spots on my white matter and on my spine but they are very very tiny and she never once used the worse lesion, but she did leave the room and had my neuro look at the one on my spine and this supposed abnormal thinning of the corpus that is characteristic of MS patients. She kept saying she had never seen this before and they didn’t know what to make of it.  One theory was that my brain is/was protected from past copaxone use.  Two is they wait and see what happens and risk having me “light up like a Christmas tree” on my next MRI.  Or do they go straight and medicate?  They were unsure but have me diagnosed as having 341.9 “demylating disease of the central nervous system, unspecified”?! What? I don’t even know what that means!
I had really bad muscle spasms that hurt really bad in front of her and made her feel them, and asked her what it was and why? How could this be and not have anything to explain them and how excruciatingly painful it is when this is going on when it’s cold outside.  She felt really bad and lost a bit of her composure and said that she didn’t know that my case was troubling her because ethically speaking it didn’t meet MacDonald’s criteria but that I was “physically declining”  and that they didn’t want to put me at risk since I’m so young. She suggested I take part in this MRI study for a higher tesla magnet as another way to find lesions.
I also had to have her fill out a disability form for the school where she checked the box permanently disabled?  I’m just so confused by all of this.  They decided to have another meeting about me and have scheduled me out 3 weeks.  They have also contacted and sent my case to a college where they are hypothesizing about the Anti GAGA test.  She also told me to call her if ANY thing changes between now and my appointment. Funny thing, she must have felt really bad about my muscle spasms because she filled my prescription of baclofen and increased the dosage to 20mg 4x a day!  I basically don’t know what to think, I pretty much feel crazy and alone.  Sorry for how long this is.

[jensequitur]

It is unnerving, but at the same time it's reassuring.  Better to have them admit that you're declining than deny that you're sick at all!  I've heard horror stories on this forum you wouldn't believe.  (Or maybe you would!)

Well, it sounds like they're trying their best.  Hang in there and see what they come up with - and keep coming here and telling us how you're doing.

[bettebelle]

Also has anyone ever been told by one of th medical professionals that they consider you physically declining? These words are just unnerving to me.

[bettebelle]

Thankyou all for your input. This has just been an extremely stressful time for me. The nurse prac also said that they have ruled out everything else. According to her ALS is out of the question because my onset of symptoms were 7 years ago. I really appreciate all of your thoughts and comments. It's rough having my family be so anxious about it since they all say they have seen me go nothing but down hill since spring.  I don't even tell them about most of what I deal with, I just tell them about the ones they comment on such as fatigue, muscle spasms, my crazy pupils that can't hold a dialation ( most of the time it doesn't hurt but they point it out) and of course my difficult with stairs. ( very painful have to side step). It's all just very unnerving. However I trust my neuro she is very compassionate.

[sllowe]

Bette,

Welcome to the forum. As crazy as it seems, my thoughts are that you are in good hands. Redstar provides some excellent info where thinning is concerned.
If it were me, I'd feel relieved to have such a team developing the plan on what they are going to do and continuing to study your specific case..

Reason being that It's extremely important to treat the right disease.
I don't dismiss a PA ,or NP for that matter. Most are extremely trained and knowledgeable to specific specialty practices - I wish my doctors practice had one who specialized in MS. Your fortunate to have one with that practice. They don't make ultimate decisions - but they can and do gather info for the doc. Stuff sometimes doc miss.

I'm so happy they are treating your symptoms - Hang in there best you can and let them work on your behalf so all know what they are treating :)
Your in good hands w/us - many undx'd members who will provide support and advice.

Thanks for joining us,
-Shell

[Red_Star]

A demyelinating disease is any disease of the nervous system in which the myelin sheath (covering around the nerves) is damaged. The list of conditions is on wikipedia: List of ICD-9 codes 320–359: diseases of the nervous system.

The corpus callosum is a thick band of myelinated nerve fibers that connects together the left and right hemispheres of the brain.  The corpus callosum transfers motor, sensory, and cognitive information between the brain hemispheres.

I had a look at various causes of atrophy (thinning) of the corpus callosum and Amyotrophic Lateral Sclerosis (ALS) lists your symptoms of very painful muscle cramping, cognitive impairment, and decline in verbal skills.

Causes of atrophy of the corpus callosum include:

Atrophy to the posterior area of the corpus callosum can be due to childhood brain injury.

Atrophy of the corpus callosum is seen more in advanced cases of Multiple Sclerosis, with more severe clinical findings and advanced white matter changes.

Regional atrophy of the corpus callosum may result from Wallerian degeneration.

Atrophy of the corpus callosum, especially in the anterior half, is present in Amyotrophic Lateral Sclerosis (ALS). Severe atrophy in the anterior fourth is associated with cognitive decline and psychiatric symptoms.

Atrophy of the corpus callosum in the absence of primary white matter degeneration reflects loss of intracortical projecting neocortical pyramidal neurons seen in Alzheimer's Disease.

Corpus callosum atrophy may occur in association with a decrease in cortical BZR binding in large cerebral arterial occlusive diseases.

Chronic sniffing of toluene has been reported to produce atrophy of the corpus callosum.

[Sumanadevii]

So she did talk to the neuro about the higher resolution MRI?

It does make me feel better knowing you have another appointment in three weeks.  It does sound like they are searching for an answer.  I guess my thing is .... I would have wanted my neuro to explain things to me...but medicine changes.  Most of my doctors have PA's.  I don't mind using them for a cold, shots, or simple tests but any more, I want that doctor I hired.

Maybe my age?  

[bettebelle]

She is a neurological nurse practioner, that's basically what I thought except she consults with my neuro and both my neuro and the practioner are saying they are perplexed.  They have a total of four neurologist on my case and can't seem to make sense of it. Which just depresses me.

[Sumanadevii]

The only thing I find a bit odd is a PA making those decisions when she admits she has no idea what she is looking at....She is a physician ASSISTANT!!!!  Why wasn't the doctor involved at this point?  I would have insisted.  She obviously does not have enough training to know what she is looking at but the neuro just might?  

I would find a neuro that is involved.  Forget a PA or nurse making these calls.  They don't have the degree to make a dx or not make a dx.  Is why they aren't called "doctor".