Need help preparing for neuro appointment

[twopack]

I've had my MRI of the brain with contrast, a VEP, and lumbar puncture.  Now I'm waiting for my appt with the neurologist next week and need help knowing how to prepare myself.

I don't know what to hope for.  My PCP is new to the practice and I love her.  No matter what happens, she is the best because she actually heard what I was saying.  She agreed immediately that as a 58 year old woman looking forward to this stage of life, I shouldn't feel so crappy or need to restrict myself from activities I want to do for no diagnosed reason.  She took a fresh look at my long history of mystery symptoms and hooked me up with the neurologist pronto.  She seems convinced of the diagnosis after seeing the MRI results.

The neuro I'm not so impressed with.  She didn't do much at all for history.  Did some general physical exam stuff and checked my reflexes, told me the areas of hyperintensities on the brain MRI could just be from my hypertension (always well controlled except when I'm faced with medical incompetents) and ordered further tests.  Why do doctors and staff have such a hard time looking their patients in the eye?  Doesn't history and what the patient says mean anything anymore?  Or is it all about what can be proven by some test?

A big part of me hopes there is physical evidence for a MS diagnosis.  I know from reading here that there are people who can understand that statement.  I wouldn't dare admit it to other people.  I know it wouldn't change how I feel or function but at least I wouldn't be left feeling crazy or that I'm just some hypersensitive to body sensations/changes hypochondriac any more.  On the other hand, I'm not convinced that I can afford the treatments I know about and a firm diagnosis would rule out long term return to where I'd like to be physically.

What questions should I be prepared with, especially if the VEP and LP are negative?  Something is causing all the weakness, weird sensations, balance problems, and vision changes.  Where would I go from there?  Or do I just throw up my hands (once again) keeping my agony to myself while offering lame excuses why I'm such an old and odd fifty-something woman?  I've told no one but my husband about the testing for fear I'll have to confess my complaints have come to nothing yet again.  

No wonder depression is common among people with similar symptoms.  It's not a symptom.  It's a consequence.  After fighting the doctors for so long, it's no wonder people have a MID (Medically Induced Depressed) Life Crisis.

Thanks for listening.  Unfortunately, I doubt my rant is unique or even uncommon.  I anxiously await any tips you can offer.
~Mary

[Lulu54]

Mary,
You know I think that as we age we become so much more confident in ourselves and the ability we have to speak up.  When we are younger, we don't see it as any big deal to back down and accept the words from the doctors or even ourselves.  

I know I rationalized all of my symptoms as something else for a long time, and didn't even bother with going to the doctor.  I always glossed over the problems that plagued me.... until the past year or so.

good luck with this and stay in touch to let us know the outcome, ok?

my best,
Lulu  

[twopack]

Thank you so much Lulu for reaching out to me, especially right in the midst of the emotional turmoil you are dealing with right now (I took a peek at your journal).  It's so wonderful that you can come here and know you will find your "little safe corner".  From what I've seen so far, this is indeed a friendly and supportive, yet honest and challenging, group of people.

A found that article in the Health Pages as I explored last night.  It was very helpful.

If any doctor tried to tell me I'm too old, I guess I'll just have to ask them if I was too old 20-25 years ago when so many of my symptoms started.  After $12,000 worth of tests way back in the 80's, they finally found out that food sometimes passes through my stomach too fast and causes my blood sugar to fall dramatically a few hours later.  OK, that's that.  Case closed.  To me, it explained some, but certainly not all, that I was experiencing.

I've just had such a ho-hum you're getting old attitude thrown my way with any complaint I make.  They made me a believe that forty anything was old and I stopped looking for answers, believing I was too weak or too sensitive or too intolerant of 'normal' body changes.  

Every so often, I would get overwhelmed by pain or fatigue or weakness and present myself to the doc.  By that time I was usually on the brink of tears and I'm sure I looked the picture of a hysteric menopausal drug seeker.  A few weeks later things would subside again or I would develop a new level of tolerance and I'd blend back into the woodwork.  I think I lost a small piece of myself (or at least my function) each of those times.  Isn't it ironic?  Now that I am actually getting "too old" I may just get a diagnosis-whatever it is.

That ramble sure helped to bring a few things together!

[Lulu54]

Mary,
Welcome to our little safe corner of the web.

There is an excellent health page written just for this purpose ....

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

I hope you will take the time to read it and prepare for your visit as best you can.

As for your age, three of the four of us community leaders here (purple flower folks!) were not dx'd until AFTER the age of 50... Ess did not get her dx until in her 60's.  Don't let anyone tell you that you are too old for MS.  There is no age limit - young or old - for this disease.

Yes, we do understand what you mean when you talk about hoping for a dx of MS.  It is so much easier to wage a battle when you have identified the enemy.

You're right about not missing your opportunity - I hope it goes well for you.  Please come back and ask all the questions you want.......

welcome again.

my best,
Lulu

[twopack]

Thanks for the suggestions and encouragement.  I'll spend some time this weekend trying to put it all into a brief summary.  Most times the docs only give you a very small window of opportunity to state your case.  If I'm not ready to jump on it I know I'll regret it.  Boy I hate leaving a office with angry tears streaming down my face.

[LATW]

I found it very helpful to have a time line of events.  Like 2002 I had Trigeminal Neuralgia start, 2004 vision problems.... That sort of thing.

Not all doctors go for the time line thing but both of the MS docs I have seen were very happy to have the events that may have pointed towards MS.

Write your questions down.  I am so nervous I have to write my questions down or I will forget.  

Those are my two suggestions.  

[Bob368]

Be honest, but firm, look your doctor in the eyes and make him understand about your history, and how you feel. A negative LP doesn't mean anything. A lot of people get their diagnosis with a negative LP. Stay calm, or as calm as you can, just think of it like a job interview. The calmer and more confident you are, the better it will go.

Good luck,

Bob :)