Neuro appt -suggestions please!

[wiggles94]

I'm going for a 2nd opinion (my idea) and have a follow up appt with the neuro Wed.  I had auditory and somatosensory evoked potentials done, and we will be going over the results of those.
I'm looking for any issues I need to raise with this neuro so here is a brief synopsis of me:

Was dx CIS 2/10 due to 13 brain lesions (some in correct place, other a bit more atypical I'm told)- on REBIF now
CSF showed increase in myelin basic protein - no o bands or IgG
symptoms for at least 5 years - off balance, numbness, tingling, confusion, blurry vision, fatigue, weakness in arms and legs
VEP- negataive
9 month follow up MRI stable - no new lesions found
NO spinal lesions found
sister dx with optic neuritis , CIS 1 1/2 ago

This 2nd opinion neuro mentioned he's thinking more along the lines of vasculitis
I don't think my evoked potentials will show anything -

He already mentioned possibly doing emg, and MRI on 3T machine as well as possible repeat spinal (had to have a blood patch on original so not too fond of this idea!) if evoked potentials are negative.

Seems to me unless he wants me to test for other specific disease (lymes, B12, lupus, and other obvious mimics have been ruled out with original docs), then why bother wasting more time on testing?

Also, saw my dermatologist for routine visit (I have had basal cell carcinoma so I am monitored) and he checked my skin for any changes that may indicate a vasculitis and didn't see anything.  He's great...his wife has MS so he's very understanding!

Have been checked out by endocronologist, rheumy, cardio and orthopedists going through my orig dx!  About the only one I haven't seen is vascular specialist!

All DOCS say those lesions shouldn't be there and I need to figure out WHY they are there.

Any thoughts would be helpful as I prepare for this appointment.

Thanks! and as always, I appreciate all the insights I get from this site!
Carol

[wiggles94]

Thanks so much for taking the time to read my post and respond Red and Audrey,
To answer some of  your questions:

I am currently on REBIF (after initial CIS diagnosis) and realize that if this is a CIS, then I should be on a DMD forever.  And they're pretty heavy duty drugs....SO of course I don't want to be on them if this isn't CIS!

  I am doing very well (compared to others who have MS!) but still can't go back to teaching (too tiring and confusing) and my exercise like I used to do is getting harder and harder.  But - I have good days and bad days.  One caveat here - I have run marathons, and long distances in the past 6 years.....so when I tell a doc that it's hard for me to run 3 miles - they don't seem to impressed with that.  Even when I preface that I had been doing distance running.   So to me, to have a hard time running 3 miles seems like a cause for concern.

So I think that the smart thing to do is get a 2nd opinion to make sure the dx and treatment is correct.  I REALLY Thought that the 2nd neuro would agree with first, and I would be relieved (in a way) that I was doing the right thing.  BUT the 2nd neuro has doubts.....so I just want to make sure that I have done my homework before I see him on Wed.

As far as I know, my other neuro did ALL the tests to rule out mimics.  The only thing this new neuro has mentioned is CNS vasculitis, and to dx that definitivly you have to do a brain biopsy......but he isn't suggesting that for me NOW.

Good suggestion to make sure I have results of all testing.  I should call the rheumy tomorrow because I don't have any results from him.  I was told they were all negative, so I never bothered to get anything from their office. He tested me for lupus and not sure what else.

I have discussed all my concerns re what the new neuro is saying with my old physician assistant from my first neuro's office.  He is quite surprised with this other neuro, but says it's common for docs to disagree with gray area patients.  BUT he said my first neuro consulted about me with a top MS specialist from PHIL and felt I should be on meds to stave off definitive MS.

So I'll follow your advice and make sure I have listing of all testing and results as well as list of my symptoms (first time I met with him I didn't have anything written down, so I'm sure I left some off).  AND unless he can come up with another possible dx with appropriate testing to support that, I will be done with him and stay with my original neuro.  I have an appt scheduled with him in April.  No way I would let him go!

Thanks again ladies.  I'll let you know how it goes.
Carol

[RedFlame]

Carol,

I'm sorry that you are dealing with all of this.  It is an arduous path and one that is tough to follow.  I can't remember if you read Quix's thread about problematic neuros but I highly recommend it.  It will help you draw up a brief list of symptoms over time, and will list all tests and their results.  Basically, a list of everything that has been ruled out.  I take a 'time-line', list of test/results, and finally notes for myself of what I need or expect from the doctor.  

If I read your info correctly, you already had the diagosis and are receiving one of the DMD's.  I am unsure of your reasoning about the second opinion.  Do you think your diagnosis is wrong?  Do you think the first doctors diagnosed you too quickly?

Lyme and Lupus are checked through the spinal tap you had so you can cross them off.  B12 can cause serious symptoms but I would one of the docs had already run that, it's usually done first.

Do you feel that you are getting worse quicker than you thought you would?  If  you are worried about motor neuron disease then go ahead and have the EMG, although it''s not the definitive test it will point you in the wrong direction.

If I was in this situation and I would run back to my original doctor and run quickly.  Let him/her know your concerns.  Maybe adjusting your meds are in order.

Red

[Audrey_M]

Carol:

I read your journal entry to try to get more information and insight into your situation.

Are you seeking a second opinion because you want confirmation of the possible MS diagnosis, or do you think that something could have been missed, or is it that all docs say those lesions shouldn't be there and you need to figure out why they are there.

If its the latter, then that is how I would proceed with the 2cnd opinion doc.

The diagnosis of MS is one of exclusion. If your 2cnd opinion neuro sees signs pointing to another probable dx, but does not have test results to rule that out, then he is doing the responsible thing by suggesting these tests be run.

So in answer to your question, if you have copies of all your test results and dr. transcripts, you might want to consider writing down all the tests, date done and whether the results were normal or abnormal. Consider writing down what the test is used for. This summary can be a springboard for discussion about what has and has not been excluded.

It will probably be a lot of work on your part, but it does help to put things in perspective poring over those papers instead of relying on memory. It also shows the dr. that you are serious and have some understanding of testing and what the results mean. As you go through the paperwork, I'll be you dollars to donuts that you'll find there have been tests run already to rule out vasculitis, most likely from either the previous neruologist or the rheumatologist .

Good luck with the visit.

Audrey