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Should I insist on an LP?

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Multiple Sclerosis
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Posted 9/12/2006 4:12 AM (GMT 0)
I've got an appointment with an MS specialist a month from tomorrow (unless I can get the appointment bumped up.) The last neuro I saw said she didn't want to do an LP unless there was some indications of MS on the spinal MRIs (which came back normal, but were really lousy quality.)

I've been sick since May. I'm not getting any better, in fact, if anything, I'm getting worse. I had a bad flare weekend before last and was in awful pain from muscle spasm, stiffness, and nerve pain for four days, even with medication for these symptoms.

In the meantime, the fatigue, the tingling and numbness, the cognitive problems, and the slurred speech are not improving and in fact, are making it difficult to do my job (teaching at a community college.)

I don't exactly WANT an LP. Just the thought of one scares me to death. But I need answers. I hate whatever is happening to my body. I want to feel healthy and normal again. I've only had maybe seven good days out of the past four months. I'm so sick and tired of being sick and tired. I just got married and I feel like this horrible thing has stolen something precious from my relationship with my new husband. I want those days back. I want my life back!

Should I insist on an LP from the MS specialist? Or should I just shut up and dwell on in Limboland. And what guarantee do I have that they'll actually find anything on an LP anyway. Do you have to be in an active flare when the LP is done? I've only had one test come back abnormal, and that was the EVP on my left leg (which also had a present Babinski reflex in my foot and hyperactive knee reflexes.)

What should I do if the MS specialist just dismisses my symptoms as the other two neuros I've seen have done? (Of course, she may not, since I had to fax her all of my records and a listing of my symptoms before she would even agree to see me. She must think that there's something going on or I wouldn't even have an appointment with her. From what I've heard, it's very difficult to get accepted for an appointment.)

Thanks and hugs,

Lisa

Post Edited (Shashi) : 9/11/2006 10:16:54 PM (GMT-6)

Posted 9/12/2006 5:14 AM (GMT 0)
Well i cant say for others, but after months of testing and seeing a neuro surgeon and no feeling better I insisted on the LP.  Well it came back normal, no OG Bands.  But on other sites and doing research, and talking with others that have been diagnosis, not all the time do the OG bands show up in the first LP.  I have a friend that has had MS for 12 yrs, he the OG bands did not show up on the LP until his 5th one.  But his neurologist, started him on the meds before the LP was positive, he for the most part is doing well, still walking, of course he has the usual problems every now and then, but starting on the meds slowed the progressions at least for him. 

I have an appt at the mayo clinic in AZ on the 25th of this month for what i was told "a week long of testing" hopefully to get some sort of diagnosis, so i know what im dealing with and can get the appropriate meds for whatever is making me sick.  It will be over a yr that I have been ill and over a yr since my last LP, im going to ask them whether or not another LP is needed if they say no then im gonna go with what they say.

I had asked the neuro if a LP was necessary when i first saw him, he said no. Lets do a few more test and see the neuro surgeon.  After all of them came back normal he decided to go ahead and order the LP.  Give input to your DR and see what he/she says, If your not totally happy suggest an LP.  As for me, I was very nervous and scared about the LP.  My imagination kept picturing me leaning over the table and them digging to "find" the right spot.  But when i got there, the dr went over exactly what he was going to do, and there was an x-ray machine to guide him to the right location. (what a relief)  Felt like a small bug bite, but hey my skin feels like that alot anyhow lol. And he kept on talking to me the whole time to get my mind off what he was doing.  I did the night before overload on caffeene, i was told that taking alot of caffeene before and when your allowed to drink after the procedure will help with the headache.  Which as soon as I got in the car after the 2hr wait after, i had to frappachino's and chugged them to help even more. Thank goodness i didnt get the sever headache that some people get. 

Well i think i have rambled on enough.  I hope your appoint when you get it goes well and you get some answers. 

Cyndi

Posted 9/12/2006 12:11 PM (GMT 0)
I think it reasonable to first see what the specialist says when you see him...and if there is still uncertainty, then say, "do you think an lp would bring me closer to a diagnosis??" and see what he says.
You don't have to be in an active flare for the bands to show up in the spinal fluid...but as someone said, even if they do show up, it's no guarantee that you have MS, either. It is just one more tool doctors can use to make a diagnosis.

While four months is an eternity when it's you in the middle of it...from a physician's point of view, watching and observing over 4 months is a very brief period of time.
Posted 10/13/2006 5:42 PM (GMT 0)

Hi Lisa,

I think you should insist on another MRI at a facility that will do a better quality job. There are no guarantees that it will prove that you have MS but I would do that first before even considering pushing for an LP. I personally consider LP's to be sort of a last resort test because there are some pretty undesirable side effects associated.

It took me 3 MRI's before my neuro saw my lesions but it was because you need two things for accuracy, someone who is good at reading and comparing the results and clear MRI's.

Well, I hope you can get some answers soon.

Penny

Posted 10/14/2006 6:34 PM (GMT 0)

Just as a follow-up to this post, I'm having an LP done this coming Tuesday (Oct. 17) at 8 a.m.  I'll let ya'll know how it goes.

Posted 10/17/2006 5:13 PM (GMT 0)

Hi,

Hope the LP went well.  I really hope you are not currently dealing with the terrible insane SPINAL HEADACHES! sad    Not fun at all.  Unfortunately I got them, but treated them with Vicodin. Felt better after 3 days.

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