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Today's dr visits

Apr 14, 2009 - 5 comments
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visit

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today

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test

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sleep

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brain

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Migraines

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parkinson's

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MRI



Neuro visit--------Dr doesn't want to put me through an Lp, MRI doesn't show any white spots at all, he said great memory area of my brain, spine looks good too.  I do have a line showing an injury or minor stroke in the left cerebellum, he doesn't think that is the issue with balance and dragging my R leg.  He will not rule out Parkinson's but doesn't want me to dwell on it as there is nothing further to do for testing.  He would like me to---laugh here----LOL walk with two ski poles on uneven surfaces, as he thinks this may retrain/help maintain  my balance.  It actually sounds logical to me.  He does not like the idea of a cane as it is only on one side.  So again no real answers...but he said there is something that is keeping my brain from keeping my body in balance, he just does not know what, and feels further test will just put me through too much.

Sleep Dr Visit---no seizures, I acted out as usual in my sleep but the Rem disorder is controlled at home so no further meds.  I do have "posts" which show migraines.  I have restless leg in the left leg only.  Yet overall slept well.  Except I had more than normal daytime sleepiness so she is giving me Provigil for that.  

Nobody needs to see me anytime soon-------so here I sit in Limbo land, for what feels like forever.

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by Udkas, Apr 14, 2009
Hi,
Just read your journal, I have been in Limbo Land for 14 years... with some remissions and just gone thru all the testing again with all the tests coming back normal, so I can relate to how you feel, as I certainly don't feel normal.  I used to cry years ago when my tests were normal but now with such a nice neuro I think of it as a positive thing, although I wanted an answer for my problems I also think if my MRI had bright spots etc. all over it that would mean things have got worse.

My Neurologist tells me I have had an episode of Transverse Myelitis but I still don't have any evidence on MRI of this, I think he bases all his decisions on my clinical exam and what I tell him. So I feel like I do have an answer now. This is neuro number 2.  Have you had a second opinion?

Sounds like your Doctor is trying to help you, I can relate to your frustration, I went thru a stage where I was DESPERATE for an answer but now I just accept that as long as no one thinks I am crazy and they can aknowledge that there is something wrong and not dismiss it or keep on monitoring me I am happy.  I would hate to receive the wrong diagnosis and then maybe later have it taken away.

I think your Dr sounds wise, it does make sense to train your body, I have found with my horse riding that my balance has improved but I work hard on trying to keep fit, and stop myself from stiffening up.

I guess if you get worse then the Dr will see you again and re test?

Thinking of you,
Udkas.

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by rudyhorse, Apr 14, 2009
Thanks so much Udkas..... I think he is a good and kind Dr too.  A name isn't important as long as he knows something is not right.  It is just that it hurts so much, I hope that I can do something about that part, the walking part hurts--it's like when you miss a step and it jars your body...

I know he will do other things if anything changes.   You are right about horseback riding, plus the horses are therapy, thanks for that thought it helps me....!

There have been 2nd opinions and they don't know either, he is very thorough and the others not so much.  Also my sleep Dr is a neuro too so her opinion helps too.

Thanks so much, your words really help....

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by shoshin, Apr 19, 2009
Sorry to hear that you don't seem to be any closer to answers.

You know, sometimes I think these doctors don't realize how much suffering is caused by being in limbo. Sure some people have a bad time with the LP, but most don't and even then it ends, whereas the stress caused by not knowing what's going on with your body just goes on and on. So I don't think he ought to be telling you that he doesn't want to put you through an LP if there's a chance it might be useful and you're willing and able to afford it. If he doesn't think it could provide any useful info that's another thing. Just my two cents.

I'm glad he is kind, but I do think you might consider getting another opinion.

sho

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by essdipity, Apr 19, 2009
Hi, Rudyhorse.

While you continue to try to get to the bottom of things, see if you can get a referral for physical therapy. No need to resort to contraptions like ski poles, etc., when your balance can be greatly helped by PTs who know their stuff. Mine has.

Hang in there,
ess

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by rudyhorse, Apr 19, 2009
HI Ess,
I will hang in there, and go to PT.  Wed I see my FP and she will get that ordered for PT.  Awhile back, probably 1yr I went to a great one and she said she would be happy to see me in the future and she really helped me with some pain issues, so that is my plan, thank you so much.  Sho said the same thing.  What you don't think ski  poles are in fashion hehehehe lol.

Oh well, he really means well.   I am just not sure where I would even get another opinion, the others are worse than him.
Maybe my girlfriend's father--he has MS maybe I could find out if he likes his dr..???
THanks so much
Tracy

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