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405614 tn?1329144114

Limbo, limbo, limbo lowwwwwwwwwwwwww

The urologist that my MS specialist sent me to in order to see if my bladder issues are neurogenic; her office called and made a new patient appointment for October 30.  I see the specialist on Novemeber 12.

I asked if there was any way to get the urodynamic testing , electromyography squeezed in before then so that we can have the results with out rescheduling with Dr. Y.sometime next year.  I got a call back saying there was no way, they couldn't fit any testing in until late November, but Dr. N.D. (urologist) will talk to me a lot about my symptoms.

I'm starting to feel like, what's the point.  I don't think there is a person on the face of the earth that thinks I might have MS, and there really doesn't seem to be anyone interested in my neurological symptoms.  It crossed my mind to try to find a urologist that can see me sooner, is in network, and will be able to do the necessary tests before November.

But I am so bloody tired of all this.  I want a magic pill or magic wand to take away the dizziness, lack of balance, fatigue, urination strangeness, etc.  I learned a long time ago that such a pill or wand doesn't exist.  I have worked so hard to become healthy and it seems to be slipping away no matter how hard I try.  Try to do all the right things, healthwise, and try to get a neurologist to take me seriously.

You've all been so wonderfully supportive, reminding me that I know something is not right with my body and to never give up. Strength to keep fighting is ebbing to an all time low.  I can't even get a 3T MRI of my spine to see if the patchy area in the thoracic is a lesion or what. Or of my cervical, to see if there is something tht the 1.5 missed that may be causing the pain down my right arm and my right hand not work so well.  MS Specialist basically pushed me out the door.  I don't want to give up, but what do I do?

Should I e-mail Dr.Y. and ask that she order a new 3T spinal MRI, since my neurological symptoms are not being addressed in any other way?  Ask her if she had the radiologists there look at my films and if so, what were their opinions?  I wish her chart notes would have arrived so I would know more clearly what she was thinking.

What should I do?  Any suggestions?

Kathy


8 Responses
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405614 tn?1329144114
I looked in my provider directory, and the only three female urologist's in my area (Oregon and SW Washington) are in Eugene.  My best friend has a friend in Springfield that works with medical assistants, and is already at work on checking which one is the best.  She will let us stay there when I come down for appointments.  She also knows of a great uro-gynocologist that may not be in network but might be worth the extra money.

I'm also looking into finding a new neurologist; my case just may be too complex for a MS specialist.  I may or may not have MS, but I have something going on that needs to be figured out, and three neurologist's that say "you don't have MS or a number of the mimics, so I can't help you".  Hello!  Neurological symptoms still rate a neurologist, no matter what the root cause is.  I don't think they come from disc degeneration of the spine, or SI joint arthritis, or bad knees, or a hip labral tear.

I'm not holding my breath about the radiologist's at OHSU.  I think Dr. Y. suggested that because I questioned her about missing something that a radiologist and a sports and spine medicine doctor both noted on my thoracic MRI.  Might not be a MS lesion, but there is something there, visible on saggital and axial views.  

If some big symptom comes on, I'll be beating on Dr. Y.'s door, but other than that, I'm not counting on her for much help.  I thought I might as well ask for the 3T of my spine while I have a neuro.

I'll be fine.  I hope Craig is adjusting to this new phase of life, and that you're doing well.

Thanks for your info. about OHSU once again.  

Hugs,

Kathy
Helpful - 0
Avatar universal
Hi Kathy,
  Maybe you should find a female urologist in network and get some things done before your next neuro appt.  I think it would do you good to start getting answers sooner than later.

   OHSU is not the only good place in Oregon.  I am sure you would find just as good a urologist if you ask around.

   Hopefully if you get some answers you will feel as though something is going on.

   I don't know how good the radiologists are in OHSU.  Craig had brain MRI's in 2004, two in 2005, one in 2006 at OHSU.  They were always read as normal and the tests were done to check the pituitary for tumors.  The doctors never went out of their way to look at the brain.  Then in 2007 when the endo changed to a Seattle hospital, the neuro-radiologist found gliosis, demyelination and atrophy.  When Craig and I went back and looked at the OHSU CD's, you could see lightened areas of the brain which was now the disappearing part of the brain.  

  So, in other words,  I am not sure how thoroughly those films you are talking about will be reviewed.

  Hang in there.
  Elaine
Helpful - 0
405614 tn?1329144114
Hi there,

Looks like we posted at the same time!  

Thanks, Oh Sunny One!

Kathy
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405614 tn?1329144114
You already helped a lot.

I'm overwhelmed with it all, the pain from the discogram and all that, the MS/not MS, the "small vessel ischemic disease" that I really don't think fits, but seems to be the diagnosis of choice, since 3 neuros are able to ignore neurological symptoms.

I have season tickets to the University of Portland Pilots soccer, and don't know how many games my fatigue, pain, heat or cold intolerance will take me away from.

I have a trip to Seattle next weekend, to San Diego Sept. 9 - 13,  and January 1 - 17 on Maui.  I want to enjoy them, and I will, doggone it!

You're wonderful, Ada.

Kathy
Helpful - 0
486038 tn?1300063367
Hi there, hope ya'll don't mind if I just jump in here.... this doesn't sound at all fun Kathy... and I really hope that you find the doctor that believes and are able to get those appt. set up in a timely manner.

Many ((((((hugs)))))))))))
~Sunnytoday~
Helpful - 0
393986 tn?1303825975
Oh Sweetie, it is okay to take a break from it too, the Dr's, the tests, etc.  But I want you to get that letter sent to Dr. Y.  You didn't say anything wrong in the letter, it was great.  

It can really start to tear you apart emotionally and physically.  I am kind of in a plateau right now.  After what happened at the hospital, I can't get it in me to get excited when they call and say they found something.  Because what one finds thee others taketh away!!! Arrrrr!!!

I get it Sweetie.  I do, if you need to talk, I am here for you.  

Love & Many Hugs,

Ada
Helpful - 0
405614 tn?1329144114
Ada, dear one, it feels like my fibers are unravelling and don't want to fight.

I've probably had a dozen MRIs in the last year, what with my knee and back and head issues, and different doctors wanting their own films.  How much will my insurance take?
OK, it won't hurt to ask.   It feels like it will hurt, but it won't.

I can get my provider directory, find a female urologist, and call and ask how soon i can get in and get specific tests done.  

I wrote an e-mail to Dr.Y. but haven't sent it yet; I feel so rotten that I want to make sure I don't say the wrong thing.

Step by step, I'll keep fighting.  Even if, for a little while that simply means that I'll keep breathing.  I'll pull it together for those who haven't even been on this path for as long as I have and feel worse.  I'll pull it together for Fluffy.  I'll pull it together to say thank you for all the loving support i've received here.

Thank you.

Love,

Kathy
Helpful - 0
393986 tn?1303825975
Hey Sweetie, hang in there.  I know how bad it feels when you are at your lowest, but you cannot not let this thing win.  You have to fight it with every fiber of your being.  I mean it, Honey.  I will not let you give up, Kathy.

Its a great idea to go ahead and get a urologist to get the tests done beforehand and take everything with you to Dr N.D.  It cant hurt to see if Dr. Y will order a 3T MRI, the worse he can say is no, but I have a feeling if you ask for one, they will get it scheduled.  I think they are great ideas.  It can't hurt Kathy.

Please, please don't give up, remember we are all in this together...

Love Ya Sweetie,

Ada
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