Question for Quix, What should I do?

[cz1970]

Hi Quix,

If you were me.... And  came to neuro in 9/07 w/ confirmed ON. Neuro exam shows Llermettes, otherwise negative.  Then in Dec. developed bilateral parasthesia in legs and right arm. and Bladder urgency and some other mild symptoms. You couldn't walk x 6 days without help. You were tx'd  w/ prednisone. Sx resolve over 5 weeks.  January neuro exam shows hyper reflexes in legs, unable to do the hop on one foot test on either side either.  MRI's of brain and C-spine neg.  LP ordered and performed today. Spinal pressure reading is 12 on open and 8 on close. Your sent home but not before you ask a question. "What if this is negative too? What is happening to me then?"  Dr respond "If this is neg, you'll just need to go on with your life."  You ask why is spinal pressure so low, you give me 3 reasons and none apply: previous LP (never had one before), hole in sinus leaking out your nose or throat (no runny nose or PND, or a blown disk (no Hx or s/s of herniation).    Your a 37 y/o F with otherwise perfect health.  WHAT WOULD YOU DO?

I am a RN student and know enough to worry myself but not enough to know what I should do.  Part of me hopes this test is negative so I can just move on and forget it all but, something inside me tells me it's MS. I know I dont have the results of the LP till next Friday, but feel this is a bizaar way of handling both issues: the spinal pressure and the potential neg result.   Do you have any advice?

Thanks!

[cz1970]

Thank you for your input.  I will plan on scheduling an appointment with the MS specialist in Spokane no matter which direction this goes.  It's a relief to know that someone out there especially a physician acknowledges somethings going on here.  Thank you again and I"ll update you when I know something more.

cz

[Quixotic1]

Hi, I'm trying to do some shorties whilte my arm lasts.  Definitely they saw something on the film that they want to talk to you about in person.  Lets hope it something that puts you in a definite category other than "looney."

About your first post.  According to the McDonald Criteria I think you have met criteria for diagnosis of MS despite the negative MRI.  You have a history of three separate clinical attacks.  That satisfies the "Dissemination (spread) in Time Requirement."  Now we have to "document" that different areas were hit during two or more attacks.  The ON qualifies as one area (optic nerve) in 09/07.  The paralysis probably had some abnormal physicial exam indicating the second area to be involved, the legs, but even if it didn't, in Jan. 08 you had hyperreflexes.  BINGO - Dissemination in space.  Remember that things the patient complains of (symptoms), but the examiner can't see (like parasthesias) don't count.  The ON is so characteristic of MS that a confident and well educated (non-dodo) neuro could have made the diagnosis.  If the LP positive in "my" mind the diagnosis is pretty much clinched by the McDonald Criteria.

Remeber my neuro believes in invisible lesions.  He just told me so.

But, I think probably all good neuro's would have ordered the LP anyway.  So far, so good.  But his answer if the LP was negative was WRONG!!!  (read that WRONG!!!).  Even though you already made criteria for diagnosis, if he was going to be such a wus and not call the diagnosis, the plan would be to repeat the MRI at intervals of probably something like 3 months.  And to try to collect more supporting data like by doing an SSEP.  If the ON was obvious on exam I'm not sure if the VEP is necessary.

The hyperreflexes are likely due to something in the spinal cord.  They don't have to be, but it is most likely.  The next step is a higher powered MRI.  "You just have to live with it?????"  What a maroon!!!  This guy needs a reservation for that ice flow and with globla warming, it's small and getting crowded.  Is that what he would tell his sister or his fiance??

As for the low spinal fluid pressure.  I'm not sure that this means anything at all.  If there are no symptoms - specific headache when upright - I don't think there is anything that needs to be done. I don't think there is any clinical entity of assymptomatic low spinal fluid pressure.  Maybe he didn't have agood seal on the manometer.   It's not something I would worrry about AT ALL until you find you way to a better and more compassionate neuro.  I know you have a good history with him and that is good, but he knows "squat" about what you are going through now and once you get your info on Friday, you should be looking eleswhere.

We're all on pins n needles now until Friday.

Quix

[cz1970]

JUST DONT WANT IT DISAPPEARING AGAIN..

[cz1970]

THANKS FOR THE ENCOURAGMENT ESS.  I'M CURIOUS WHAT QUIX WILL THINK TOO.... Hmm

[essdipity]

I think your conclusions are right on target and at least some of the results are abnormal. They no doubt are simply waiting till Friday since you have an appointment then. Hang in there for a couple of days--at least it isn't longer. If you get an MS diagnosis, see if you can be referred to a specialist. Good luck.

ess

[cz1970]

Hi great questions....  Yes MRI"s were w/ gadolinium. No T-spine or L-spine just the C-spine.  No I personally haven't seen/read the reports.  Great point!  I will request a copy of them.  Also my neuro is in his late 50's early 60's maybe and is a general neuro.  He's treated my migrains great so...???  This is very interresting to add.  Monday I had to go in the hospital for a blood patch thanks to a whopping spinal headache and the RN there said my lab results were in and she could give me the results.  She was so friendly and helpful.  Anyway she pulled up my file, got a wierd look on her face, took the computer over to the Anasthesiologist, they talked very quiet. We over heard her say "Ya they are all in. These are the results..."  then she came back and acted like we never had the conversation about the lab results?  How wierd is that!  I suspect the results weren't "NEG" otherwise she would have said something like "Oh they look fine."  .... Also, the neuro said he would call me if results were negative so I dont have to come in for another visit so I can "just go on with my life." as he put it. So today is Wednesday, no phone call from neuro and the results apparently are in.... Hmm.  I'm not going to worry although today is a go pee every 30 minutes day again.  So something has to be wrong.....

Thanks OH YA, I haven't had the EVP either.  Dr said ON was obvious on exam, no need to do it.

Cz

[Amyloo]

I am not Quix, nor a doctor.  Just someone diagonosed last  month.  Couple questions:  MRI's with contrast too?  How about T-spine?  (Mine showed two lesions, none on c-spine.)  Have YOU seen your radiologist's reports from MRI's?  I had two drs.  tell me mine were "normal" but reports said different.  Completely different.  (Last report showed lesions had grown and multiplied in 10 months-thats not normal.)  Do you trust your Dr.?  Can you get another opionion?  Amy

[cz1970]

Just trying to keep this on first page so i can get an answer.....