NeuroTalk Support Groups - ? about my LP report

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- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - ? about my LP report (https://www.neurotalk.org/multiple-sclerosis/37711-lp-report.html)

Very disturbing.

Go to your PCP and ask them to retrieve your file then. Then go in and talk it all over with him/her and get a referral to a MS Specialist if there are any in your area. I have to fly to Seattle if I want that....so good luck finding one in your area!!!

Hay how would you know if the LP was positive or negative? Just because to Dr says so?

Sorry I can't get off this. :icon_frown: I just really feel there is more to my report and I can't find any answers.

When I get my results today, I'll see if I'm able to answer this question for you....at the moment, I'm clueless :p

:hug:

I would demand in writing that the lab provide you with a full report of findings. That is what worked for me (lab had kept telling me to ask my doc, but they responded pretty darn quick after they got that letter form me.

Could your insurance company help you wth this? Or perhaps the nice nurse you spoke of? Just a thought.

You currently have three threads going, with pieces of information about your history, test results, etc. in each thread. I'm having a hard time keeping track of all the bits to the puzzle, so I thought I'd bring this posting over here:

Quote:

Originally Posted by momXseven (Post 201489)

... At my last visit with him he was cold about this whole thing. He told me that he didn't know what was wrong with me and that he could treat some of my SX. He said he would treat the anxiety with Cymbalt and that might help my pain also. I asked about the other SX and he said he didn't know why I was getting them so he didn't know how to treat them.

I have come right out and asked if this didn't sound like MS, I even had the neuro in the ER say he thought it might be. He said it did NOT look like MS to him.

I don't think he has ever done the Evoked Potential tests on me, he tested my reflexes and had me walk a few steps and tap my thumb and index finger together but thats it. He did do the EMG on me and I passed it.

He still will not talk about the LP and the fact that the Myelin Basic Protein was high and shows that I have a brake down of the myelin or that the IgG rate indicates I may have just had a flair (which I did).

Quote:

Originally Posted by momXseven (Post 201528)

I got a copy of my LP results and at the bottom of the page it says "Continued on Next Page". It's just like the blood work papers from the same lab but at the end of the blood work papers it says "Last Page of Report".

I asked the neuro's nurse if there was another page and she said NO, I told her that the bottom of the page said "Continued on Next Page" and she said there wasn't another page on the LP. The nurse did say before they got the report that it would take a while that the report was very detailed and lengthy. ONE page with 19 items is detailed and lengthy!

Is there a lot of things on the LP reports? I have the Cell Count (includes 10 items) and the MS Profile (inducing 9 items) and Glucose, protein & VDRL. Is this all an LP is? I know that some have asked me how something had looked on my LP from here or MSW and it wasn't on my report so I feel like maybe there was more of the report.

If I call the lab is there any way they tell me if there was more than one page or even send it to me?

I'm perplexed as to the reason that any doctor would even want to hold this information back, if he is. :confused: What purpose would this serve him (and you) to try to deceive you? If the results did come back indicative of MS (or something else), why do you think he would say otherwise, and hold back this piece of information from you?

The results that you have gotten back, about your MBP levels, etc. would not be diagnostic criteria for MS. Only O-bands and MRI lesions (of a certain type), plus neurological/clinical testing . . . and he is saying they are all fine.

My neuro (and doc) do not spend much time testing me in their offices either (5 -10 min, max), when I go in for my annual visit. They KNOW what to look for in a split second.

You are in limbo, and as I said in a prior posting, they will NOT give you a dx without the tell-tale test results for MS. It is frustrating, no doubt . . . but NOTHING you do will change that. :cool:

I have a good friend who I've known for 4 yrs (who's an occasional member here too) who has virtually the same results and symptoms as you. I told her then what I've said to you too. . . you will cause yourself considerable grief if you continue to pursue this right now. There is no evidence of MS, and until there is, there is nothing any doctor can do. Unfortunately, even WHEN there is evidence, there is often very little that doctors (and medication) can do for us. :rolleyes:

I do think it is worthwhile to get a second opinion, if only to put your mind at ease. However, as I understand your history, this may be a second opinion (had one 4 yrs ago...?), so it seems you are just going to stay in limbo for somewhat longer.

I think you are stressing way too much about something that nothing can be done about. I understand why you would, TOTALLY, but worrying is not going to change anything. :hug:

Cherie

Quote:

Originally Posted by momXseven (Post 201616)

A thought:

send an email to the doctor and ask him to break down all the results. Ask him what the 'norm' is for each of the tests performed, and how it compares to yours....and if yours are not within the norm...then to explain what that means in laymans terms...so you understand.

Quote:

Originally Posted by greenjeans (Post 201628)

I did, he didn't answer that email (I have to send it to the nurse and the nurse sends it to him and sends the answer back to her to send to me :confused: ) instead he called my DH and told him my LP was OK.
I came right out and asked him to tell me why the Lymphs were at 100% (should be 40-80), why the Monocytes was 0% (should be 15-45), why the RBC were at 12 (should be None Seen), why the MBP was high at 4.2 (should be 0.0-1.0) and if the -2.1 of the IgG rate really did indicate I could have just had a flair (it was in the normal rang of -9.9 - +3.3, but I had read that in a - range could indicate just having a flair).

Sounds like you've done all you can...and why did he call DH? Isn't that illegal to divulge a patients history/results to anyone but the patient? Unless you agreed to this.....

Guess it just goes right back to the PCP....or a new Neuro. I'd say you are still in limbo and have to get a second opinion. Maybe when you reach my age you'll have more showing up? Not that mine are giving me answers....but I have more showing now than I did then :rolleyes:

I'm about out of here for my (drumroll) results.....

EDIT: If you asked him directly about thos results....he must have had an answer?

Quote:

Originally Posted by greenjeans (Post 201654)

I'm about out of here for my (drumroll) results.....

Good Luck on your results, hope you get real answers. :Good-Luck:

Quote:

Originally Posted by greenjeans (Post 201654)

EDIT: If you asked him directly about thos results....he must have had an answer?

He didn't answer me, just called DH and told him my LP was OK. :confused: