LP question & neuro visit tomorrow

[Deb61]

Should I bring up the question of doing another LP?

I was diagnosed with RRMS in January/February this year and have been on Copaxone for a month.  The diagnosis came the day of my MRI scan.  He compared the old MRI with the new one and noticed that there were four new enhanced lesions and growth of the older ones.  The first MRI (with this neuro) was completed in July 2007.  I had blood work out the kazoo to rule out every known disease known to mankind, a CAT scan of my chest to rule out active TB, an echocardiogram to rule out heart problems, etc.  I also had an LP in July that was drawn in the hospital.  I was diagnosed with demyelinating disease with just looking at the 1st MRI (results of everything still not in).

Here's the rub:  This is hard to explain, but I'll try my best.  The thought is occuring to me that the LP MS panel was never sent off from the hospital to Mayo.  Two months after my LP, I had an appointment with the neuro, and he commented that the "important results" were still not in.  Everything but the results of the banding, etc. to show MS were not there.  When I called a week or two after my visit, I was told that the results were "inconclusive".  When I asked what was positive and what was negative, the nurse was unable to tell me.  So my thought was that I would just get with the doctor later.  

Well, when I got with the doctor, I remembered to ask him on the way out of the office to ask about the LP.  He said that there was an increase in protein and something else.  He never mentioned anything about oligoniclonal (sp) banding whether negative OR positive.  

In my next appointment, that was when I had my MRI and got my diagnosis.  I was in the middle of a flare-up and wasn't thinking straight.  My sister was with me and helped speak for me.  After looking at the MRI, he was looking over my records and commented to himself, "I WONDER IF WE SHOULD DO ANOTHER SPINAL?"

My sister interceded and said, "She really didn't do so well on the spinal tap that we had this summer."  

His response was, "Well, I see what you mean.  No, she really doesn't need another."  And then he started talking about medicines.  

Well, here I am, probably going through some denial, maybe, but I'm having some lingering questions as to why he brought up the spinal tap thing.  I don't know if my spinal fluid ever made it to the Mayo clinic for the MS panel.  My records did not have the results of this in there when I picked them up at the last visit.  

Should I ask him about the spinal tap or is this opening up an unecessary can of worms?  Do you think that the spinal tap will rule out that I have MS?  I would rather not have to take shots if they are unnecessary.  Denial??????  Don't get me wrong, it is nice knowing what is wrong with me and get treatment, but I've got some lingering questions in the back of mind.  What would you do?  Should I ask him about an LP or not??????

Thanks,
Deb

[Deb61]

I've had my neuro appointment already today--I just got back a couple of hours ago (had a long drive).  I didn't mention anything about the LP stuff.  

Now's the time where I need to start actually trusting my doctor!!!!  I've gone for years of misdiagnosis, dismissal, being told I'm crazy or stressed-out, so frankly, I've totally have lost all my confidence in doctors all together.  I know some of you here can completely relate!

I've also come to terms with the fact that I will never know what the LP results could be, because I really do think that the hospital never sent my spinal fluid to Mayo.  My records do not have this information in about the oligoniclonal banding.  And they're never, ever, ever going to get any more samples from me unless my doctor is having serious doubts about me having MS.  Plus, what good would the result be now, positive or negative?

It makes me mad to think that I was charged so much money by the hospital and went through that much pain for not having the results that were the most important for putting any kind of doubts at all to rest, but I can't let that eat away at my trust in my neuro (plus, I don't have any interest in nailing the hospital or doing an investigation).  My neuro has already explained to me why it must be MS when looking at my MRI's, blood tests, etc.--I'm just being a dodo bird going through some denial!!!!  I already knew I had some form of MS BEFORE my LP, anyway, just after he looked at the MRI's and most of the blood work results.  

It's just weird and alien to actually have a doctor that is actually caring and good at what he does!  Now I have to do something that I haven't done in years . . . trust my doctor!!!

Thanks for everyone's support.
Deb

[sllowe]

Deb!

What's going on girl??? You doubting your dx? Oh boy.  You must be making yourself crazy.  

My 1st thought is that you may be confusing your Dr and that appt a bit since you were in a flair.  It's very common.  You re-think the appt. remember some things, forget others.  You were dx'd you without all the LP results right? Or, did I read this wrong.

2nd though is that you absolutely need a copy of the LP lab report.  Many people w/MS have negative LP's though, so don't hang your hat on that and think if it's neg. you don't have MS.

3rd thought is that you absolutely have to talk to you Dr and spill all your fears.  This Dr had to put together a puzzle to dx you.  So, just start by asking him/her what those pieces were.  That should put your wandering mind at ease a bit.

I totally understand what your going through, really I do.

Keep taking your meds.  Get your questions together in your head, then jot them down.  

Hang in there, we don't think your crazy to think this.  

- SL

[CtResident]

I saw somewhere here in this vast array of posts (was it Rena??)

When you have an LP, and must get up to use the bathroom after alllllllllll those drinks, to walk like Groucho, with your head down lower than your shoulders. We'd had a big time of Marx Brothers movies here this past winter, so that advice really jumped out at me.

I hope you never have another LP again, you have paid your dues!

Suzanne  

[Deb61]

Ess-  Thanks for responding.  I didn't do very well with the LP in the summer.  I was flat on my back for 9 days in bed--every time I got up, I had the worst headache!  I remember telling everyone that this would be the last I would ever go through that again!  Now I find myself questioning whether or not I should have another LP????  My husband wants to boink me on the head for evening thinking about this!!!!!  

My sister's LP was inconclusive, and she still got a diagnosis (and she had the MS panel results) because of her disability level, location of her lesions, EVP, etc.  

I never had the EVP testing, but you're right, I've had some clinical observations put in his notes about spasticity, nystagmus (sp), weakness, a +Babinski, and hyperreflexes.  I'm going to put this LP thing to rest, unless he mentions it again.  Thanks!

Suzanne-  Thanks for getting back with me.  I'm thinking I never want to go through the LP again as long as I live!  I don't know what I was thinking when I brought this questions up--but thanks!  If my doctor brings this up again, I'll discuss this with him.  I need to come to terms with the fact that I really do have MS!  I have been down the limboland road for a very very long time and it's hard to believe that I actually have a diagnosis of something.  I thought I had lupus all this time!!!!

Sweetie, I've been keeping up with your posts, and I don't know what to say!!!!  I feel bad that you've had such a rough time of things at your last doctor visit and are having eye problems.  I've been down that limboland road and know how frustrating things can get.  I'm pulling for you!!!!

[essdipity]

I should add that during my exam my new neuro did muse out loud about maybe ordering another LP. When I asked him later he said no outright, not necessary. Sounds like your doctor.

ess

[CtResident]

When in doubt, ask! Discuss the pros, the cons, the good, the bad, you know, communicate with him!!!

or you will forever wonder "what if.....??!!"

Be at peace!

Suzanne

[essdipity]

Don't get another LP 'just to make sure.' If it is negative that doesn't mean you don't have MS, so an LP can't rule it either in or out (though + makes it much more likely). I'm sure you've had all the rule-out tests. What about EPs? And what about your hands-on neuro exams? I'm assuming there were abnormalities there. All that, in conjunction with your MRIs, is more than enough for a diagnosis.

My current neuro declined to do another LP before my diagnosis, even though mine was 2 years ago and was negative.

If your LP was uneventful in terms of after-effects, be glad, and don't tempt fate a second time. I do understand that you may still have some ambivalence about your diagnosis, but I really don't think an LP is the answer.

Good luck.

ess