Seen New Neuro Today

[angie99]

Well It didnt go as I had hoped. Had everything laid out for her, she just barley glanced at my timeline, asked about the migraines I have NOT been having ( thx to my pcp) and asked about the TN. Looked at mri's said that the syrinx at T4 would not be causing any of my symptoms. looked at blood test done, said all looked good and there was no other blood test she would order. used the vibrating thing on my feet and up the leg, then used another tool to see if i could feel the coldness, which from foot up to getting close to knee I could not feel it cold. she looked at my eyes said they looked good and that is all she did, said that all my symptoms look like ms, but my mri are clean, so no ms. I asked her about the TN, and shouldnt we do another brain mri, it has been a year and new symptoms, shouldnt that call for a new mri? She said it wouldnt show anything probably but if it would make me feel better she would do it, I was like yeah....would like to make sure I dont have a tumor or something. She said that she could prescribe something for my symptoms but cant give me a dx. said we could talk about that after she sees the new mri.
If there is nothing to show up then I just give up...I am so frustrated it makes me so mad, they dont even listen to me.
anyway just thought I would share this disapointing news.....well atleast I get the mri, june 26th. then I take the films straight over to her to look at so atleast I wont have to wait for a f/up appt.
thx for listening.

[sllowe]

Great hatched plan.  You can always call the neuro you just went to and mention that while you are waiting on the MRIs and the next appt., you would like to move forward w/a referral to someone about the syrinx. . . . you just need that piece of paper gal.  

Your close - this close. . .

No sense in waiting!
-SL

[angie99]

I tried to ask many questions, but she kept jumping around from thing to thing, and once I got the vibe from her I was done.

She ordered the Brain, and my recent mri was in early Feb, 08 of complete spine.

Well, my sister (RN) we hatched a new plan,

She suggested I keep my MRI appt. But dont go back to that neuro, She wants me to go to Univ of Ky, where the have 14 of the best neuro's in the world.and it is right here in lexington.
So this morning I tried to make appt myself, but the guy sd have to have referal, and if he gets referal today then it would be end of july before I could get in.

So what do think?

My sister agree's with you all, neuro just blew me off....she said she wouldnt even waste time going back to her, ecspecially letting her read the mri.

[sllowe]

Hi Angie,

This is very disappointing.  I am glad you are getting new MRIs.  

Did the Doc say what could possibly be causing the syrinx?

I understand that they will watch it because it is small, but if they found "something" that is causing it, would be in your best interest.  I know you read many of the things I did about those.  Not that we would know more than a professional would, but still know enough about them in "general" terms.  From what I've read, the syrinx, can cause many symptoms that are exactly comparible to what I've been dealing w/mine being a lesion.  Finding the cause of syrinx is in your and your spine's best interest for goodness sake.

What did she order - Brain?  And, the recent ones were C and T right?

In the meantime, if it were me, I'd get my 2nd appointment lined up.  That way, you'll have reports in hand and what you need to move forward.  Just incase this has the tendency to be a stalemate.  Which, with you having to ask for new MRIs and her response that she will make no dx unless something shows up (and she wasn't going to order them w/out the suggestion in the 1st place), sends up many warning signs of a not so aggressive doc.

So sorry Ang, we're here for you gal,
-SL

[ohwild]

sorry your appointment didn't go so well , but horaay you are going to get a new mri scan , get another neuro as well
Hugs
CJ

[LLWB]

I too am sorry about your appt with the neuro. BUT I have a different take on the Super-neuro you want to see..............how in the world could he possibly see 10,000 patients, and be able to give each one the time and care they deserve?????? You want a neuro who will take the time to properly examine you, listen to you, and be willing to answer your questions and concerns in a timely manner ie returning phone calls, scheduling appts in a reasonable length of time,  reporting results of tests to you. If it were me I might be looking for another MS specialist. Just MHO.  Hope your MRI shows something so you can get some help.

Maggie

[Quixotic1]

I found that thread and moved it up for you.  Q

[angie99]

thanks, sounds like just what i need.

[Fluffysmom]

Does anyone have a copy of The Care and Handling of Neurologists that someone wrote a while back?  I think that's what it was called.  

It had great advice on how to approach a neurologist firmly, but with care being taken about his/her ego.

Oh, I wish I could find the copy I printed out. It must be in the archives; I'll go take a look.

Hang in there angie, you'll get your answers!

Kathy

[angie99]

thanks alot guys,,,,I've been thinking about this, I am not giving up...my pcp told me " this practice is great..they will not leave a stone unturned" I think I will tell her this.

You know these doctors almost make you feel like nothing really is wrong with you.

I dont know, I will be looking forward to the mri, this one will be done on a different (hope)
machine...atleast a different place and different radiologist.

Hope you all are doing well yourselfs
thanks again

angie

[biowham]

It just burns me up how often a doctor will say, apparently, that "We'll get the MRI, but we won't see anything on it." WHY do they say that? They're sort of scientists, kinda sorta, right? No scientist worth his/her salt would before the fact draw a conclusion about data that aren't even in yet! That's just stupid. But I read on here over and over again that doctors say that to patients. What is UP with that?

I'm sorry about that appt. She sounds dismissive and as though she simply doesn't care that there is a person in front of her, with a neurological disorder that warrants investigating.

Bio

[doublevision1]

I had normal MRI of brain and neck in 2006 following episodes of Lhermitte's Sign.  My GP said that this normal MRI "ruled out" MS.  My neurologist at the time was less definitive, saying something like "I see no evidence of neurologic disease."

One year later, more symptoms, an abnormal MRI, an elevated LP, and a MS dx, all within a period of about 6 weeks.

Normal MRI's do not 'rule out' MS.  It may just be too early for it to be detected.  

Just a little more anecdotal evidence for you.


I'm glad you're having a follow up MRI and I would push for the LP and evoked potentials too.  Something is causing your symptoms, whether it be MS or something else.  Keep pushing, politely but firmly.  Be diplomatic.  MD's tend to be more diligent with assertive patients who are well-read and ask intelligent questions and are persistent and don't allow themselves to fall through the cracks.  And if this approach alienates your neurologist, you don't want to be seeing somewhat like that anyway, right?

db

[Rena705]

It broke my heart to read your post honey...so many of us have had experiences like this and yet they don't seem to stop.  It is a very frustrating situation and I am sorry to say that it is not a new one.

I agree that you need to get away from this neuro...she is a clueless wonder that seems just too darn lazy or it's too inconvenient for her to give you the obvious follow up tests.  If you are able honey please do yourself a favor and try to find someone new.  Was this neuro an MS Specialist?  If not, please go to your pcp and let him/her know that you want to see an MS Specialist a.s.a.p. as this neurologist has stated that your symptoms appear to indicate MS but your MRI did not according to her.  I would like for an MS Specialist to see your last MRI and this next one...I believe that you may come up with a more satisfying ending to this story.

Lots of Hugs,

Rena

[slightlybroken]

I'm so sorry that you had to go through this. I can relate....believe me. I have read the horror stories of fellow forum members about dismissive neuros and I have had first hand experience with those so-called doctors. It's hard when you want a name to something that you are fighting and the doctors just throw up their hands and give you nothing.

It really gets me going when I hear this. Your doctor SHOULD be fighting just as hard as you to get a DX. I haven't lost faith yet, even though I've come close, in finding out what the heck is going on with my body. Hang in there and believe that you will get the answers even though it might take a few neuros to do it.

[angie99]

Why do they have to be like that, I dont understand it, should I ask for the LP if mri comes back normal?
How long did it take you to get dx.
this patient there today told me that  tthe guy I wanted to see has over 10,000 patients
dont know if i will get to see him.

[jensequitur]

When I was going through the diagnosis process, several people said to me "Well, maybe the MRI will come back okay, and you won't have MS."  That scared me more than anything, because I knew something was wrong!  If it wasn't MS, then what was it?  Brain tumor?  Early onset of menopause?  I had no idea.  I was relieved to hear it was just MS, and not something worse.

I would try again to get an appointment with the best neuro in Lexington, but don't put too much hope in him.  Even the best neuro can be close-minded when it comes to an MS diagnosis.

[angie99]

Thanks to all for your encouragement....
June 07 Brain mri ordered after onset of symptoms, came back normal
Feb 08 Spine mri ordered after a repeat of symptoms,  came back Syrinx at C3-7 and possible Syrinx at T4. Everyone agrees that the syrinx is small and should not be causing any of my symptoms.

Her words were " all the symptoms you describe being in different areas and different times sounds like ms, but your mri of brain and spine are clean, so we can rule that out."
when I was leaving she said i should be happy that we can rule out alot of bad things,
I said "I will be happy when someone tells me what is wrong with me"

I was trying to get appt with the best neuro in lexington which is at this office, but I couldnt get in with him. I am hoping maybe she will consult with him. I dont know, I am so sick of this, do you think she will look more closely at all my reports later,  she made copies of them, like she did not even look at the opthom report, viterious detachment, causing floaters and flashes. She suggested the migraine aura, I told her no migraines...

I almost said to her that I had read about ms and how long it can take to show up, but I didnt, should a person be that forceful with the docs, or would they just show you the door for sure? Or do you just keep looking for the right one?

very nice to talk to you Quix, I read alot of your responses,,,,your great

thank you all again, this is a great place.

[Quixotic1]

Let me get this straight.  She agrees that your symptoms and exam findings are consistent with MS, but it definitely isn't because the MRI is clear.  Typical defective-neuro thinking.  The proper response here is for HER to suggest the repeat MRI (which should be of brain and spine).  With the positive physical findings, the elimination of the MS mimics, and your history she should be trying to collect all possible data.  The does mean an LP and VEP at the minimum.  

If you have a clinical picture suggestive of MS these should be acknowledged and you should be followed up at intervals with repeat MRIs after all the supplemental testing has been done.  This nitwit is willing to ignore the evidence she has and show you the door.  Even though it is d*mned hard to get a diagnosis with a normal MRI, a good neuro will know that MS IS NOT EXCLUDED BY A NORMAL MRI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Get the new MRI.  If it is not diagnostic, you need a new neuro!  In My Never So Humble Opinion.

Sorry you got one of the dull and medicocre ones.  Or she is possibly just too lazy to try to think.

Quix

[6-paq]

Sorry too that your appt didn't go as you wanted it.

Are you having new symptoms in your legs/feet?  Did she check your reflexes?

Did you have spinal MRIs previously, and if so, were they clear?  

If you're having new symptoms in your lower extremities, maybe your doc should order spinal MRIs as well.

Good luck on the 26th and I hope you can get some answers!  I do understand your frustration.

Take care, Pat :)

[spastic]

Hey Sweetie, I am sorry the appt didn't go very good.  It sounds like your neuro needs to be on Fridays weenie roast.  But at least you are getting another MRI and hopefully the neuro will change her mind about some things and give you a treatment plan.  You hang in there Sweetie.

Love,

Ada