Question about MS specialist

[sarahw244]

I am a limbo-lander who has been seeing a regular neuro, he is my second neuro.  Anyways, I have been having new/worsening symptoms for the last few weeks, although they seem to be getting better now.  I contacted a second opinion program through a hospital about 60 miles away who has a MS specialist.  The nurse I talked to said she would give the specialist my records and call me back if he would see me.  I just found out today that he will see me in a few months.

So my question is...Is it really worth it to see this guy?  Will it really make a difference?  Part of me says yes it will; if it's not MS he will still probably be the best doctor to point me in the right direction if it's something else.  And part of me feels like I am just going to be wasting his time and mine.  I don't know...should I go through with it and see him?  I am all-the-sudden feeling really intimidated now.  Thoughts anyone?

Thanks,
Sarah

[LisaJF]

I agree with everyone here.  Keep that appointment.  Your health is not a waste of time and to seek out the professional opinion you need -- is imperative.

Lisa

[COBOB]

See the MS doc.  Neg EPs and a Neg LP do not rule out MS.   If they were positive, it would help rule it in.   This is where PCPs and general Neuros can get stuck.  The advantage of MDS docs and MS centers is that they see a broader range of MS patients.  They seem to see the ones that "too healthy to have MS" and the ones that have been hit "way too hard and fast for it to be MS."

A lot of "general neurologists" can recognize the classic text book cases of MS with T2 lesions, OC bands in their LPs and abnormal EPs.  The 10% of cases without OC Bands seem to through a bunch of the general neuros off.  Positive EPs require damage in very  specific areas of the brain.  

My vote is to see the specialist.  I think they will still rely heavily on the MRI and physical exam.  In my case the abnormal VEP and diagnosis of ON helped.  The docs at my MS center didn't seem all that concerned that I had a negative LP.

Bob

[tingletingle]

By making this appointment I believe that you are only moving forward so good on you. I like the fact that you are seeing an MS Neuro and you never know you may just find a better connection, more understanding etc. So many in this forum are in limbo land and experience simply dreadful treatment by their neuros.Let's hope that with his experience he may pick up on something not seen before which leads to a dx.  

I'm extremely lucky to have been an easy case to dx but that doesn't mean I or my wife is happy with my exisitng neuro so I have made an appointment to see another guy in November for a second opinion. He is about 2 hours drive away at a cost of $290 bucks but I just want to find one who relates better and makes me feel as if he is looking out for my interests. Although I respect the many years of study that it takes to become a neuro I think we, the paying customer, should still be able to have an opinion and have all our symtoms taken seriously.

So I'm voting with my feet, largely thanks to courage so many other stories here have given me and I wish you well in finding the right neuro for you.

Blessings
Alex

[sllowe]

Sheesh - I just typed you a message, and lost my net connection! aaaah - that's so frustrating.

The short of what I said, is "go for it." Otherwise, you'll be wondering the same you are now - am I wasting my time, etc.

Especially follow through on your gut thoughts to do this if your 2nd reg. neuro has offered nothing in respect to what the problem is. At least the specialist will look into all the possibilities.

Get your timeline together, so you can discuss your history w/the new doc.
-shell

[sarahw244]

Apparently, my missing link is a negative LP and negative EP's.  I believe my lesions are "non-specific".  The radiologists report isn't very specific, to say the least.  I know they are in the frontal lobe, a few in different areas of the parietal lobe and by the frontal horns of the ventricles.  I think there was one other area, but I can't think of it right now.  In the report, it doesn't offer any kind of differential as I have seen on many other reports on here.

I have also had more than two attacks.  I've probably had about 2 per year for the last 3 years or so.  They have all been reported and documented to one doctor or another.  I know that there are many different diseases that mimic MS and I know that some of them have been ruled out, but I am sure not all.

I was also told that there should be lesions in my spine, but there aren't any.  I think this also is deferring my dx.  Apparently, my lower body symptoms should have a corresponding lesion in the spine, or whatever I was told.

Anyways, thanks for your input!
Sarah

[Sidesteps]

I do think you should see him. I think with the new criteria being released this last Spring, it is really important for a Neurologist to be on top of the latest information with dx'ing MS.  Unfortunately, I don't think many are as thorough in keeping up on the latest as they should be when it comes to this particular disease.

I picked the MSologist I'm going to see in a couple weeks on a variety of factor's. Mostly, I wanted a doctor that would go over my missing link (the MRI) with me and review my tests and MRI's independently.

Forgive me, but I can't remember what the missing link is for you. I know you have lesions that show on your MRI. I know you have abnormal examinations. Is it that they don't have DIT showing two attacks? I'm confused as to what exactly is holding them back with you.

My vote: I think you should keep this appointment. You can ALWAYS cancel it if something more definitive comes up but it's always good to have a back up plan. :)