Family doc says going toward a MS diagnosis...Neuro's lips are sealed! Confusing!

[Mlkjmom]

I am a newbie and limbolander. You would think as a nurse I might understand this stuff better, but no such luck.

Neuro said on last visit that my EMG and NCS of my right side showed definate damage. (Nerve I'm assuming) and that it confirms that I do have Neuropathy. (Still with no known cause)

He ordered another MRI (this time of my entire spine and brain) and a LP. When I asked why, he said, "to see what we find". (MRI is Wednesday, LP next week)

He won't tell me *anything* other than I have Neuropathy and we are trying to determine the cause. When I asked about MS, his answer was, "probably not." (He answers most of my ?'s with, "yes", "no", and "probably not")

My family doc has been keeping close tabs on me and when we went in for our flu shots she went over my chart with me. She said she feels MS is a definate possibility. I have every common symptom (except optic neuritis). She told me just to be patient with the Neuro and see what my tests say.

? #1= I know I need a second opinion but my insurance is denying it until my current Neuro exhausts all tests and treatments...is that common?

? #2= I'm so confused...Does MS sometimes present as Neuropathy at first? (I thought they were totally different things)

Thanks in advance. :)

[ku111]

I do feel for you!  I am a nurse also and my son Jordan (age 12 now) is in the "limboland" category and have been for over a year now.  I thought I knew a lot until all of this but it is extremely complicated (lol!).  I just try to learn as much as possible from the MS Society website and on this forum.  I can help you through a complicated pregnancy and delivery but I have been researching, studying and learning everything I can for over a year on "highly suspected MS" and I still feel there is so much to understand.  I wish you the best!  This forum is wonderful with many people who explain a lot to me that I don't understand or question.  Glad you are here!

[twopack]

?#1  I don't know how common it is.  I guess it depends on what insurance you have and how the plan is laid out.  I can see their point from the aspect that you can't really get a second opinion until you have a first opinion.  It is clear your neuro has no opinion at this time.

I guess I'd try to hurry him along.  Maybe ask him to expound on what his plan is or what he's thinking.  Did you learn how to ask open ended questions in school?  The best way to get more answers is to devise questions that don't allow for single word responses.

I do feel for you.  My PCP in 1990 wanted to do one test at a time and wait for each result before ordering anything else.  He said it made more sense to be "systematic" in approach.  That may have been true for him but not so much for me.  I wasn't feeling good, wasn't working, wasn't taking care of my family and wasn't getting better.  I WAS making too many visits to his office though.  LOL  

I lost it like a crazy woman and told him what I thought of his theory in the office hallway one day.  Nothing changed.  He's still that way.  He's just not my doctor anymore.

Does your insurance allow a change of practioner not related to a second opinion?  You might want to consider that--or you might want to leave that option for another time down the road.  Neuro tests do take time no matter where they are done or who does the ordering.  You might as well sit tight for opinion #1 unless it begins to look like a life long process.

?#2 is a little tricky.  MS presents as neuropathy because it is.  But it is a central neuropathy rather than peripheral neuropathy.  Is that what you're really asking about?  The EMG and NCS tests for peripheral neuropahy.  The findings from those tests are generally negative in PwMS unless there is a coexisting peripheral nerve problem.

Hope something in there helps.  I'm feeling wishy washy tonight and my response sounds like I feel even to me.  Sorry.

Hope you get some answers soon and from there... solutions.
Mary

[sadie405]

Ugh. How frustrating. So sorry you're having these issues.

Sounds like your current neuro is trying to narrow things down, and is being very thorough and taking you seriously-- this is good. At this point all kinds of things could be causing these test results. If he's in a place where he's just saying "neuropathy" he's probably not even sure yet whether there's a Central Nervous System illness or whether something is causing peripheral neuropathy.

Many docs are VERY wary about speculating with patients over what *might* be when the possibilities are so varied, not realizing that sometimes it's more anxiety-inducing to feel totally in the dark. Hang in there...

Best,
Sadie

[SarahL2491]

I think I'd stonewall him......answer my questions or no tests......
if he balks at that, time to find a new doc, handwriting on the wall.
They should never be hesitant to tell you what they are thinking and why they are ordering things.

I may be wrong and someone correct me if I am, but the LP will only show active lesions........

Am not the "just be patient" comment!  Oh well, I do get "testy" at neuro's sometimes but they can be so "lazy" and "know it all"..........ok no more venting.

Hope you get some answers..........