Preparing for MS neuro appt. Monday morning...somewhat scary...

[Fluffysmom]

I have a lot to discuss, and it may possibly be my last visit with her.  I've done much to prepare for it, and would really really appreciate any input/suggestions.

I posted some things in my journal; Issues to discuss with her, My Symptoms and how they impact my daily life, as well as my latest Timeline.

If anyone has the time to read and comment on them, I would be gratefull.  They are fairly short, except for the Timeline; you can skip through it looking for highlights, lol.

I'm hoping to change things for the better, even if things are rough for a while; now they are at a dead end with this neuro.

Hope I can sleep tonight; I'll probably be up early, making sure everythings in order (lots of documentation), and being somewhat nervous.

Wish me well...

Kathy

[Fluffysmom]

Thanks for wishing me well.  :o)

My expectations are very low; I have really gotten nowhere in 8 months with this MS specialist.

First I will request that she order the 3T MRIs of brain, C and T spine that she promised to do in spring.

I will inform her that my cardiologist has totally contradicted her theory as to why I have brain lesions and neurological symptoms; the theory that kept her from ordering other tests, looking in other directions, etc.

I will discuss the tests that the rheumatologist ordered as well as past tests that should rule out any mimics, vitamin deficiencies, etc.

I will also discuss with her the fact that my chart notes from the day I saw her during a flare of neurological symptoms don't reflect that flare at all, and that she didn't respond to a letter and a copy of the journal entry I made about that visit that day that tells a different story than her notes, and then once again did not respond when I e-mailed her about the situation several weeks later.

I will discuss the symptoms that interfere with my daily life, and have for around 14 months.

I will request that she order a VNG, or will ask my PCP to order it.

I will most likely ask to be transferred to another neurologist.  I'm afraid that this specialist had her mind made up before I walked in the door, and don't know why she didn't transfer me when I requested it during that first visit after she told me that she thought I had small vessel ischemic disease, and did not think I had MS.

It's making me nervous because I want to be calm and clear and assertive, and am afraid that my frustration will rise up, or that I'll get flustered and not cover everything I wish to.

The big picture may include big changes; that's better than stagnant in Limboland!

I have notes, I'll do my best.  I'll do breathing exercises, remember things I've learned here, and hope that Quix has a little strength and wisdom to send my way.

I've printed out some stuff from the Health Pages to read in the waiting room.

[Nancy T]

No advice but just wishing you well, Kathy.

Actually, I do have one piece of advice. See what you can find out, ask your questions, seek symptom relief, but -- keep your expectations low. Then you won't be so disappointed if the neuro turns out to be less than helpful or says something shocking (as they tend to do the latter).

And keep focused on the big picture. No single doctor's appointment can or should be a make-or-break thing (if you don't get help, re-enlist your PCP or another doctor), so don't let it make you too nervous!

Nancy