Backk from neuro

[luverofrogs]

Well, I went to see my new neurologist today.  She didn't look at the MRI cd.  She wouldn't look at the stuff that the eye dr wrote down either because she said that he wasn't an MD and that she had no idea what he was talking about because she doesn't know much about the eyes.  She took a toothpick and scraped it across my forehead, cheeks, forearms and calves.  She touched the vibrating thing to my middle finernails, knee cap area and near my ankles.  She had me take three steps each on my tiptoes, heels and heel to toe.  She had me touch my finger to my nose then her finger once on each side and then track her finger across, back and then up and down.  She had me stand with my eyes closed.  She asked me to subtract 7 from 100 which I did easily.  Then she asked me to subtract 7 from 93 which I couldn't seem to do, but eventually came up with 84.  She said that my exam was normal other than subjective feeling differences.  She sat at her computer and typed a lot.  She asked me some questions, but nodded and waved me off before I'd finished answering most of the time.  She asked if I'd ever had nerve conduction testing, LP or spinal MRI and I said no to all of those.  I said yes to EEG and brain MRI.  She asked if I had insurance and I said that yes, I have very good insurance.  She asked me if previous medication I'd been given helped at all and we discussed that Neuroting/Gabapentin worked well for me.  She left the room telling me to wait for her after telling me that she'd give me samples of Lyrica.  Her nurse came in with the sample bottles and a script.  I'm supposed to go back in two months.  I asked what the dr thought was wrong with me and the nurse said that they are waiting for my records (notes from previous neuro's office and EEG results from several years ago).  So, I left not really knowing anything, not even what direction we may be looking into.....  My husband doesn't want me to go back, but wants me to find new drs, both primary and neuro now.  I don't really know what to do....  

[luverofrogs]

I called the MS center at the university medical center.  They said that they would be happy to see me, but require a referral from my primary dr.  I'm not sure that my primary will do that since he sent me to the neuro that I saw today.  I'll probably have to wait until she comes up with something, then request a second opinion so my primary will do the referral.  My insurance doesn't require referrals, but it seems that most specialists do.  The lady said that every Wed at the MS center they have a social worker and a support group meeting.  I'm not 100% sure I understood correctly, but I think that she said that I need to be seen by the center to be in the support group.

[Wobbly]

Hi.. this sounds alittle like what my MS specialist did, except the nurse had given me the full Neuro exam before I spoke to the specialist.  She kind of left the room for something... and the nurse came back not her... the specialist didn't want to look at the CD.. but looked at it at the last moment and disagreed with what the Radiologist wrote down....but sent the nurse back in to say I have 20 or more lesions.  

I went back after a few months and she was alot more informative. She talked about what she seems to think... maybe MS, is a demylinating disease, but doesn't know which one??  

she has sent me for alot more tests, all neg except the opthomologist says it's a movement thing, my cellebrem?? getting more testing.. it just take awhile to find the right answers.  She told me not to dwell on too many symptoms.. and let her know if I get worse or feel different.  

she has me on meds, Gabapentin, Amatadine. etc.

I'm still going to this clinic as they are still working on it?  I guess when they tell me they can't help.. I'll go for other opinions...??  But, I'm hoping to get some answers from this place..

good luck and take care
keep us updated and keep records of changes with your symptoms..
wobbly
undx

[luverofrogs]

There's an MS center near me that's on the MS consortium that Quix talks about in her health pages.  The nearest MS society chapter is over 4 hours away from me, which is surprising with the clinic being close.  

I wish that she would have looked at the films.  I have and I saw a few spots on there that look like they shouldn't be there and I would like to know if they really are normal or not.  They look like lesions I've seen in pictures online.  

Sigh....

[luverofrogs]

Thank you:o).  I'm not really sure what to think.  They asked for films and records and I came with what was requested and the dr didn't even look at the film.  I'm not really sure what to think.  That was one of the fastest and least involved neuro exams I've ever had.  I didn't like not being able to finish answering questions.  It seemed like another case of the dr only hearing what fit whatever they were thinking.  I wish I at least had an idea of what she was thinking or something.

I've been on this journey to figure out what is wrong with me for 11 years, so I've been dismissed before.  I feel like I have been again, but then, I hate to never go back without giving her a chance to come up with something.  I'm probably going to keep the appointment in 2 months and then see where it goes.  If that doesn't get me anywhere, I'll seek a second opinion and try to get in at a university hospital in a city near me.

[MsWobbles]

I agree with Jannette2836 wholeheartedly.  She should have looked at your CD and discussed her impressions with you.  You are in good company here:  Sounds like one of my many nonproductive encounters with neuros.

Suggestion:  Contact your local MS office.  Get involved with your local MS group even without a diagnosis.  Just because you don't have a diagnosis doesn't mean you don't have MS!!  Go to local MS support meetings.  Find out from the people at those meetings who diagnosed their MS - take a notepad - make a list of those MS-diagnosing-neuros' names.  Then go see them for evaluation!!  

Good luck!!  I'm where you are now, in limboland, and scared about what it might be.

WAF

[Janette2836]

WOW - talk about being dismissed!  A couple red flags for me - 1. did not look at MRI cd, 2 did not read eye doctors notes, 3 gave you meds without an explanation of why & what they think it might be.  I understand them not wanting to jump into a dx without all the facts but to not talk to you about the possibilities BUT to give you meds anyway - I would be looking elsewhere for another doctor.  That is my 2 cents for today.

Welcome to the being dismissed club  :)  You are in good company here  :)

Janette

[Lulu54]

I know the delay is not what you wanted to hear, b ut I think I would wait the two months and go to this doctor again.  That they are waiting for your records says something.......
and then see what happens next.  

You know from being here that limboland moves slowly - its a process that just won't be rushed.  That is little comfort to those of you stuck in limbo...........

my best,
Lulu