What to do; 12 days 'til appt. with new neuro/MS Specialist...

[Fluffysmom]

Dr. C. will be neuro #4, second MS specialist.  I'll have been in limboland for a year and eight months.

I've seen lots of specialists, have had lots of tests done.  In 20 months, I've had lots of symptoms.  I have lots of records, and a lengthy Timeline.  I'm thinking about summarizing my Timeline, telling which symptoms I've had how often, which have been ongoing, which are new.

Do I include the nerve pain in my right side from under my ribs down to my toes?  Do I include the weird stuff with my neck, throat, and upper chest pain, trouble swallowing,  that came after fighting a sinus infection for almost a month?

I plan on organinzing my notebooks, having a list of test that I've had done on which dates, so that if he's interested in any of them, I can pull out the results.  He already has my 3T MRIs of my brain, c and t spine.

The appointment is supposedly for 1.5 hours.  I know I let him take the lead; it's his specialty.  What do I speak up about?  How do I remain calm if asked about previous neuros and their opinions?  Imagine them naked, LOL?!?!  Ewww...

If anyone has the time to read my Timeline (in my journals) and give me some suggestions, I would appreciate it.  I haven't added my neck stuff, I don't think.

I'd appreciate input on how to deal with this appt.  Quix, if you read this, I know you've been to this Clinic, though to a different doctor.  Any suggestions?

I ordered a refill on Provigil, that prohibitively expensive stuff, to help me prepare for my appointment, so all my records are in order, my paperwork is completely filled out, etc. I'm still groggy from recovering from the sinus infection and I guess an exacerbation.  

I'm tired and fuzzy-headed even after many hours sleep, and one of my Provigil.  I'm taking my sister out to lunch today, and I'm waiting for my Provigil to kick in...guess I'd better get up and moving more.  It does seem to work better when I'm active.  I went shopping on 100 mg. a couple days ago, and thought I'd need a nap after my visit to Borders.  I took a short walk in the brisk fresh air, and went to WinCo and bought canned soup, beans, fresh veggies, and staples in case the flu strikes, since it's pretty active now.  I see my PCP in a week, and will get my flu shot then, whichever one they have.

See, my brain is kinda wandering.  This is a question about how to prepare for and approach my upcoming appointment with my new MS neurologist.  Help!

:o)

Kathy

[saveone]

Kathy as you read in my post, the neuropshychologist said only things relevant to the brain on the timeline.  I know sometimes it is impossible to tell what is caused by what.

He said as short and sweet as possible because if you overwhelm (he was talking about neuros) them they tend to lump in the category of it is all in your head or you are crazy.  Both of which we have encountered.

Dr Oz says never tell the second doctor what the first doctor said, otherwise you are influencing the dx before you get started.

I don't think that means don't share test results, just pick and choose what you want to share, but always tell the truth if asked if you have had some particular test/procedure done.  You can always explain why you do not agree.

Ess and Ren helped to shorten mine.  It is  in my journal if you want to look at it.

http://www.medhelp.org/user_journals/show/83653?personal_page_id=261903

I want this to be the one that has the answers.  You deserve them.  terry

[Fluffysmom]

Hmm, my last neuro had very neat hair, as did my first; the second one WAS kind of messy, lol.  I have met up with a lot of arrogance, but still have hope because I've heard that good neuros do actually exist; several people on this forum have actually encountered them!

Thank you, I am pretty good at advocating for myself.  I do want to be gentle withthose egos, as staying in limboland is a royal pain.  I would love some answers.  I am indeed what I am, but I would like to put a name and possibly good treatment on what exactly has gone wrong with me.

I got two long phone calls while I was writing this answer, and I sent you a note first; curious about your ability to stockpile Provigil.  Your insurance covers it?!!  Wow.

[Lil Bo Peep]

Cute nic!

I'm on neuro # gosh I don't even remember!  I find most of them useless and extremely arrogant.  I had an orthopod friend tell me all neuros are weird and you could tell because their hair is always a mess!

FWIW I think you should take your notes and timelines just as you have written them.  They represent YOU and how you view your life and body.  You are your own best advocate and there is no right or wrong way to present.  You are what you are and it is too bad if doctor doesn't like it!

I don't know how you guys get through the day without provigil.  I take 200mg a day although my prescription is for 200mg 2x a day.  Someone mentioned generic, so I am going to start stockpiling!!!

[Fluffysmom]

The trick with appearing at my worst for an appointment is the getting there part.  If I'm fatigued, dizzy, or fuzzy-brained, I often don't feel safe driving.  

I think I could work that out, though.  I could have my roommate take me into my apartment on her way to work, and spend some time doing some much-needed cleaning; dusting, vacuuming, scrubbing the tub, etc.  Then she can pick me up around 2, drive me to my 2:30 appointment (not far away), then return to work, and pick me up when she's done for the day.

Maggie,have you seen my Timeline?  Do you agree that I should make a condensed version?  In my Word version of it, it is nicely spaced, with dates in bold; I think larger type might be a good idea.

I'm hoping that Dr. C. will cover things as completely as Dr. M. has for others; his msneurorating is good.  :o)

Thank you very much,

Kathy

[LLWB]

I can't speak about Dr. C., but when I saw Quix's Dr. M, he read my timeline. I had it in fairly large type, with breaks inbetween major sx's, flares, and illnesses. He had already reviewed my brain MRI, and went over it with me, showing where the lesion was in my brain. And my appt lasted the 1 1/2 hrs, including a VERY thourough physical exam. I'm praying that this doctor in the same clinic will do the same for you. And I agree with Weakandfalling. Don't be too "normal" whatever that is, LOL. Wash a few loads of clothes, vacuum, mop floors etc. That might not seem fair to some, but those are all daily things that need done, and should give the dr a good indication how your sx's are affecting you.

Good luck, and I'll keep up the prayers.
Maggie

[Fluffysmom]

Thanks for your input!

I do get my Provigil in 200 mg. tablets, cut them in half.  100 mg. is sometimes enough to make me feel alert enough to drive, and get some stuff done.  Other times, not even 200 mg. is enough to get me going.

Today for instance; I was fine finding my sister's new place, except for turning the wrong way off the freeway and having to find a place to do a U-turn.  I'd map-quested it, but I made a mistake.  Then I found myself forgetting what I was saying half way through a sentence.  Embarrassing!  My sister is the one who uses "herbal medication" and she was more clear and together than I was today. :o(

As for my Timeline, part of it is a memory aid for me, to remind me how long symptoms lasted, if they happened after I was sick, when I saw what doctors.

Wobbly, you're so right, I agree that it should be much shorter; I think just about everyone says the same thing.  I just need to clear the fog from my brain, sit down with a print-out of the current version, and make a more brief and concise Timeline.  I can have the original with me if he wants specific dates or how long the symptoms lasted.

I did make a list of the four things that bother me most about my symptoms with my last MS specialist, and it did get me a referral to dizzy PT, testing, and a oto-neurologist.  I'll try again with the new MS specialist; thanks for the idea.

I'm hoping for a thorough neuro exam, and a good look at my MRIs and history, especially the part where I have no risk for small vessel ischemic disease, unless it's a rare genetic form, though I haven't had anything pointing to such a thing.

I'm hoping for fresh eyes and an open mind.  An ansewr or two would be nice, too!  :o)

Kathy

[Wobbly]

Hi there... well it wont be long till your appt now.  It's been a long wait.  I really hope you find some answers this time.  I looked at your timeline and my opinion only is .. I would shorten this quite abit.. I noticed you recorded days by day sometimes... this is only my opinion and I may be wrong and others might say the opposite..remember I took so long to find answers and you may be doing it right and I was doing it wrong.  

but when I saw the MS specialist.. I had a long timeline and she didn't want to read it.. she preferred a shorter version.. monthly maybe... like " Aug 2008 - Vertigo, numbness on left side lasted 2 weeks, etc..
instead of daily... ONLY my opinion..and I could very well be wrong.

and I also figured out when she said...What three things are bothering you...she asked me this on the second visit before my Dx.. so it took me three visits to get my Dx.. and it was 1 year seeing her.

I know they should do a long Neuro exam, and they did more on the exam then the other Neuros I saw.  I guess being a MS specialist they do that?  

I really hope you get answers on your visit.. you have been waiting so long.  Not too long now..

take care
wobbly
dx

[MsWobbles]

Hi to you and to Fluffy!

One suggestion:  Don't take Provigil too close to the day when you see the doctor because it may make you seem too normal.  You want your MS symptoms to show up on the day you see him!!  I know I feel and probably seem much more normal on the days I take it!!  

Re the cost:  Just a few more years and it will go generic!  Also, having your MD order it in 200 mg pills and then taking half of a pill (100 mg) is usually the cheaper way to go.  I have found that half a pill is enough for me!!  Have you tried 100 mg?

WAF