Test results back - Back pain & headache

[Lori814]

Hi all and happy holidays.  I've been M.I.A. for a while.  Sorry.  Trying to get through the final 2 weeks of this semester and then had a QSART test.  Got the results back which indicated a mild abnormality in both legs and feet.  I found out this test was done to definitely diagnose my CRPS.  However, I was already diagnosed with that almost a year ago!  The reason I was sent to the neurologist was to find out why I was having all these other horrible symptoms that seem unrelated to CRPS.  So, although I have another abnormal test result, I don't feel any better because I still don't know what's causing the other problems.  

I've had horrible back pain during the last month.  Goes from the bottom to the top and is most always accompanied by a severe headache/migraine.  My pain meds aren't touching the pain at all.  I did finally get an appointment for a second opinion with another neurologist who is closer to home and supposed to be wonderful in getting back to her patients and spending quality time in the office going over things.  I see her on the 9th of January, I think.  Am starting to prepare my records to take with me (test results, symptoms journal, other stuff ...)  I was thinking about taking it all over to her a week early so she has time to look at it before I get there.  I hate to waste time while I'm there when she can take a little prior to the appointment and familiarize herself with my case.  Do you think that's a good idea or should I take it all with me?

Tried to do my Christmas shopping today after a haircut.  Didn't do well, but got my husband's gifts all bought.  I am trying to push myself to bake some cookies for the family, but it is so difficult.  I have pizzelles made and was able to teach my daughter-in-law how to make lady locks, but that's it so far.  I'm running out of time.  Because I was on my feet so much today, the back pain has returned in full force and I'm miserable.  Tomorrow's not looking good for baking.  I should've started earlier I guess.  Live and learn.  I have to stop expecting myself to do the things I did two or three years ago.  Each year I've cut back, but this year is by far the worst I've ever felt.

Had two episodes of double-vision this evening.  Both only lasted about 5-10 minutes each.  Muscles are popping, probably from being on my feet.  Feels like I've got a hamster running through my body, popping out in my arms and legs every so often.  Showers are still uncomfortable afterwards from the heat.  I have to come out and sit in front of my fan to cool off before curling my hair or putting on make-up.  Now it's done in segments.  That's just crazy.  I've noticed that if I exert myself with housework instead of pacing myself, I get overheated and feel horrible.  Guess that's something I need to tell the neuro as well.  I feel like I'm in someone else's body.  

Well, the good thing that keeps me going is watching my daughter during her pregnancy.  I can't wait to be a grandma.  Am all ready except for a playpen and a highchair to keep here.  My son and his wife are trying to start a family as well.  2009 should be a great year for the family.  I hope I can get a Dx and get on the meds to feel better, no matter what it turns out to be.  

Have a great holiday everyone.  You're always in my thoughts and prayers.

Blessings,
   Lori

[saveone]

ess gave you good information.  I just to reiterate do not mention MS in any way.  Last appt. my neuro said you had a MRI, correct?  I said "yes but it was not done with MS protocol.  That was a mistake.  His eyes narrowed and he said, "Did someone tell you that?"  When I replied yes, I knew I had screwed up.  "There is no such thing as MS protocol.  The hospital does it all.  There is no MS protocol."

I wanted to say, then why are all the doctors who write about MS stress how it is important.  But I didn't because I at least need him to order all the tests.  Then if he doesn't dx me I will take my records and find another neuro.

I hope you get your answer and have a Merry Christmas

terry

[doni54]

Hi Lori,

Sounds like you are still moving forward, and that's a good thing.  Good luck with the new neuro!

Your 2009 does sound quite promising, you can just spoil grandchildren!!

I pray that your dx comes soon and you can get the treatment you need to feel better.  You'll need energy to keep up with the new grandbaby!!

Merry Christmas,
doni

[Lori814]

Thanks for the good info.  I'm planning on putting my records together today.  Your suggestions are wonderful and I will follow them.  Great to have such wonderful people in my life like you.  Much appreciated.
Lori

[essdipity]

Hi Lori. Just want to comment on your upcoming appointment with the nice neuro. Yes, do take the info you have assembled, but make sure it's a copy, not the original. She may want to save it to read. Organize your tests results logically, by date and type, so she doesn't have to fish through the pages much. Your symptoms journal can form the basis of your timeline, which we talk about all the time here. If you want suggestions on this, I'm sure many will respond.

But in general, start with the date, describe symptom(s) briefly, what you did or tried to do about them, and when they abated. Go on to next round of symptoms. Don't speculate as to what was causing what. Make this whole section as brief as you can, not more than a page or two.

The idea is to get the neuro to actually read what you bring. That will get much more likely, the more concise and logical it is. Sending it in advance may or may not work. I hope others will comment on this. But even if the neuro is looking at your material while you're there, have your own copy with you. Sometimes we get nervous and forget things.

Leave MS and all other diagnoses out of your report and out of your conversation with the neuro. That will minimize any idea that you are 'too' knowledgeable or are pushing towards some diagnosis. That kind of thing is a red flag for some neuros, who will then stop taking you seriously and think of you as a hypochondriac. We've seen that here all the time.

Well, you have lots of time to get this together. And in the meantime, I hope you find ways of enjoying your Christmas thoroughly. Just pace yourself and don't try to do too much.

Have a good one,
ess