Just heard from my Neuro today

[nette573]

I gat a call from my neuro and my lp was normal no banding.  They want me to see a ms specialist in Houston and my husband is balking.  He is saying we cannot afford going all the way to houston to see a dr.  Which ii is a 8 hour drive.

What do yall think should I just continue with the neuro hear and see what happens or go to houston?  My neuro is giving me the opption.  They say I have the clinical symptoms of ms and all my labs are normal except the brain mri.

Lynette

[sllowe]

2nd, 3rding, 4th or 5thing what was said above.

This disease needs to be dx'd correctly and promptly.  It's important.  Make the call.  Hubby needs to know that it's important to know what is going on and this Dr.  recommens you going.

Do it!
-Shell

[nette573]

Thanks, I may call him tomorrow.  I may try to get the ole hubby to go we have a son leaves not far from houston.!

[Fluffysmom]

I remember reading that 1 in 25 people with MS have a negative LP.  

Maybe you could call your neuro's office and ask if there was a particular reason why he wanted you to go all the way to Houston; isn't there someone capable of an informed second opinion closer to home?

Is it possible to fly?  I've heard that some airlines are dropping fares because people just aren't flying as much since the economy has worsened and the prices for flying were going up.  Maybe it would be less expensive, if you can tolerate flying and there's an airport close to Lamesa; sorry, I have no idea where that is!  :o)

My thoughts are that if Houston is where you need to go to get some help, then there is no way that you can afford NOT to go.   A good specialist is comfortable with diagnosing from evidence that might make a regular neuro unsure of him/herself.  

Best of luck

Kathy

[doni54]

Hi nette!

I agree with everything Heather just said.  

Sounds to me your neuro thinks it is MS, just wants that second opinion due to the LP and the other tests being normal.  He does sound like a nice guy, and listens to what you are telling him.

Let us know what you decide. And good luck, whatever your decision.

Take care,
doni

[nette573]

Yes, he wants me to see the ms specialist to get a second opinion I think.  The nurse called and told me this stuff.  She said I have the clinical symptoms of ms. but...my lp and all my labs normal..  I think she forgot about my mri with the two spots on the right parietal white matter.  . . .  I really liked my last appt with the doctor it was like they really listened to me.

[Heather3418]

You DO NOT have to have a positive LP to get a diagnosis of MS.  And believe it or not Lynette, your current doctor is trying to tell you that also, by wanting you to see an MS specialist in Houston.  I DO believe that 8 hour trip is worth it.  It shouldn't matter if you had to travel half way around the world...if your health and future treatment is at stake here  The time and miles should make no difference.  Agreed?

Try to explain to hubby that an old lady that has been diagnosed with MS for a long time, just told you that your LP CAN be normal and you still have MS or receive a diagnosis of MS.  As with lesions that are not seen, it's said that eventually (if your symptoms continue) that they WILL show up at a later time.  Just like your LP can show banding at a later time.  If it looks like a duck, walks like a duck quacks like a duck, IT IS A DUCK....

So get your appointment dearheart and go see that specialist.  You have a doctor now that believes you DO have evidence of MS, despite the negative LP.  He sounds like a great doctor.

One question though, if he wants you to see an MS Specialist and wouldn't be sending you that far away if he didn't already think you have MS, then why doesn't HE diagnose you with MS and be done with it?  Does he really feel that another doctor should be the one to make the diagnosis?

Big Forum Hugs....you need them....

Keep you chin up and tell your hubby to fill up the car.  You have a trip to take.

Heather

[ShockedToday]

I also got the results of my LP today and they were normal.  I was told before I had it done that they (optho & neuro) were 90% sure I had MS due to my having ON and around 20 lesions on my MRI, in addition to my other symptoms.  In 2001 I had 5 lesions.  So now I too am wondering what this will do to my dx.  I see my dr in 2 weeks and will likely go get a 2nd opinion either way.  Maybe you could seek a 2nd opinion from someone closer by?  It doesn't hurt to ask anyway.  Or look online for MS clinics or specialists.  You might find someone on your own.

[Wobbly]

I'm not yet Dx and have had symptoms for a few years.... last year at this time I was alot better then I am this year.  I'm using a cane more often and have more pain then last year.

I have 20 lesions in my brain MRI...none in my Cspine..waiting for a full spine MRI.. have seen 3 or more Neuros.  (but not 8 hrs away)... but ??  My LP is normal as well, so that's one reason I don't have this Dx...

there are so many Neuro Dx that it could be... have you have alot of tests done?  
does Neuro want a second opinion?  
sorry, can't really help on this answer...but I would ask the Neuro if there are any other tests that might help in the Dx of what it is?

take care
wobbly
undx