Apparently I have no spinal fluid.

[Nancy T]

Or so it would seem. The radiologist, despite five or more attempts (I lost count--and hope--after the fifth), could not get any fluid out of my scoliotic spine!

The poor woman was really trying--she tried different areas, kept moving her x-ray machine around, tilting the table, having me cough, massaging my spine, consulting with a nearby colleague, etc. I know she got "in" every time, because I could feel all those yucky pops. But it just didn't flow. I could tell she was frustrated--especially because when she first looked at it under x-ray, she thought it would be pretty easy. Me, I just couldn't believe it was happening (and still can't).

I am disappointed beyond words. I managed to keep it together til I got home and my husband went back to work, then I had a good cry (not sure why tears flowed so easily when the spinal fluid wouldn't--aren't they connected?).

I had assumed, and COUNTED ON, getting the LP results, at long last, to bring me to some kind of resolution: either final confirmation that it's not some kind of atypical MS, or objective evidence that something IS wrong (besides the highly abnormal BAER).

Now I've got NOTHING... and no possibility of knowing LP results, in contrast to apparently every other person on the planet who's been suspected of MS--it seems like everyone else in diagnostic limbo has gotten the LP and knows the results. I mean, is there anyone else whose spinal fluid was impossible to extract, even under fluoroscopy?? What the h--- is wrong with mine? Clearly, my body is determined not to give up any good diagnostic evidence for anything.

I am still saying that I don't have MS, because my MRI remains only nonspecifically spotty and my neuro exam remains essentially normal. I only wish I could bend MY head and make my NEURO's knee buzz, or foot vibrate! Now that would be an objective sign for him. But I don't think he doubts what I'm telling him.

At least no headache so far. Thank you for that, at least, my dear stubborn spinal canal.

After 12 years of NO good answers for ANY of my symptoms, I have to close the books. I think everything within reason has been done. It's just not in the cards for me.

Many thanks to everyone who gave me headache-prevention advice on my other thread (Jan and Udkas and Lulu there at the last, thanks!) and all kinds of other advice and support at other times. You guys are really wonderful!

Nancy

[Mamatessj]

Thank you for your post.  I had my first experience with a Lumbar Puncture that didn't happen today.  I cried right there in the room with the Dr. present.  I couldn't help it.  I have numbness from my waist down and I felt helpless when he kept asking if I felt anything weird.  I told him I couldn't feel anything.  This numbness and MS diagnosis has all happened in the past two months.  I am on a emotional roller coaster.  So thank you for your post.  I don't feel so alone anymore.

[Udkas]

Oh, Oh, Oh, I am almost speechless, which is rare for me!!!  I feel so much for you and what you feel and what you are going through, so I am sending my hugs.

When we go though these tests we hype ourselves up hoping that this might be the one that will shed some light on our problems, and I am like you, I can live with my problems but they are by no means "normal" and it is nice to have answers.  Clearly from the way you tell it something is going on and obviously at this time science/technology is unable to prove it.

The Lumbar puncture may have confirmed something else, it may have eliminated some things, it would have been a good thing to have, if you can and have the strength emotionally and physically to do this again I would give it a go, maybe like Bob said they can do it a different way. Wow, I really do feel for you, I would have been gutted if mine had not worked, even though mine didn't confirm anything but I guess it ruled out a few things.

I feel the same with my neuro, I won't go back now unless something big happens, although I am still in contact.  We know our bodies, we know when they are not right, we have to trust ourselves and our own instincts, the trouble is society also expects a diagnostic test for every thing and sometimes the tests are just not here yet.. The nice thing is this forum is very supportive and there is tons of people who understand and can relate to how we feel, or have similar symptoms.  Hang in there, you are not alone.

Cheers,
Udkas

[Nancy T]

Lisa--she did keep asking me if I was doing OK, she was going to try another site, was I OK with it? and I would say yes. Before the last (fifth?) one, she muttered to herself, we'll try this one and then that's it. That was fine with me, because by that time I'd been on the table an hour and was ready to get off it. She apologized a lot even though it wasn't her fault.

It is not essential that I get a spinal tap. I am most worried about my walking distance, but when my reflexes and such are normal, it is not necessarily MS that is causing that problem. My dizziness is not worsening and I am totally used to it even though I don't like it. The shocks, paresthesias, Lhermitte's, etc. have stayed in their same individual "relapsing-remitting" patterns for many years. I do think I have brainstem damage due to extremely abnormal BAER on both sides, plus other odd little "crossover" symptoms mostly involving my ears; no eye problems, though. (I did have a sudden unilateral hearing loss when all this started, but it was probably due to an inner-ear artery blockage when I sneezed hard. It's a little bit of a coincidence, but the hearing loss could have been completely unrelated.)

But it's not as if I HAVE to get a diagnosis. Even if a spinal tap came back positive, I would not get a diagnosis of anything, I'm sure, because my MRI is not too suspicious (one radiologist long ago said it was, but the neurologists do not agree with this, apparently). And my current neuro said that even if I did have MS, he would not put me on a drug.

This stuff started when I was 42 (except the dizziness, which started when I was 25), and I am now 54. If I haven't gotten a diagnosis in 12 years, despite reasonable investigations by three neurologists (I don't count the first one, who didn't investigate), I am not likely to get one in the near future; and even if I get some kind of diagnosis after another twelve years, when I'm 66, what would that mean? It's just been too long. Maybe the scoliosis really is the cause of my walking problem (the scoliosis specialist denies it, but then he WOULD, because I am not a surgical candidate, so he does not want to take "responsibility" for my problem and have me as a patient).

Addi and tick--thanks very much for your kind comments. Addi, I am sorry you had such a scary time with your second LP! At least this was not scary for me; all I had to do was lie still on the table and let my mind drift away until she called for a cough. It is indeed amazing how what looks to be a simple procedure can get so complicated!

I have no return appt. with the neuro, as he made it clear he has no other ideas and I agree with him--I have none either. If he does not call me about the LP, I will consider calling him to ask about another way (and the radiologist did say yesterday I could reschedule, could try with a different colleague, etc., but she did not sound hopeful; I asked her did she have reason to think someone else could do it when she couldn't, and she said no). But for now I need a break. I cannot see myself going back to the neuro unless something new and really significant happens.

Yes, the BAER was really abnormal--it was literally off the charts--some of the values were double the normal. And it wasn't just on my hearing-loss side, it was on the side where my hearing is normal, too. It was definitely "retrocochlear" damage, meaning past the inner ear and in the cranial nerves/brainstem. But, no explanation... not even from the biggest dizziness-specialist neurologist in town, who had ordered the test. He lost interest.

Thanks again, everyone! I very much appreciate the input and the kind words!

Nancy

[addicted2harleys]

Nancy-

First off, quit kicking yourself!   This is not your fault and you are not alone in your experience, hun.  I have had three LP's.  The first one, I don't remember.  The 2nd one was similar to yours.  I was told it was a pressure problem, as bob says.  They kept moving me around with the needle in my back, too.  Trying to get me more in an upright position to help the fluid drain.  They did get mine.  But it was traumatic and scary for me.  And this "simple" procedure didn't turn out so simple at all.  

So, don't beat yourself up.  Pick yourself up, dust yourself off, and get back into position.  :)   I know it *****.  When you go back to your doctor, ask him what happens now.  You already have a bad BAER test.  That means something.  And maybe you can give the catheter LP a shot....errr, a try.  

Hang in there.  We are all here for you!  Glad you didn't get the headache!

Hugs,
Addi

[LisaJF]

Apparently after the third time she attempted to advance the needle into your lumbar space she should have stepped back and left it alone.  However, if it did not cause you any discomfort ---  Although I know that bone spurs or scoliosis can interfere with LP's but the woman wasn't going in blindly??!!!??  I can understand at the bedside....but

I dont know you or what your symptoms may be -- however, if it is essential for you to have that LP -- do what Bob suggests or find out if you can...if you have the stomach to go through that again...

Best wishes to you

Lisa

[cainer]

wow nancy, gosh  i have never heard of that, im sorry too you went through so much and no answer- then this!! hang in there!1

[Nancy T]

Thanks, Bob. Good to know. Yes, it was fluoroscopy that they did. I did not know there was another way.

[COBOB]

No.  It sounds like they did a fluoroscopic guided Lumbar Puncture.  Most of the time this is done by a Neurologist or a Radiologist.  They use lidocaine to numb up the spot where they stick the spinal needle in.  

Anesthesiologists can thread a small plastic catheter into the thecal space like they would for continuous spinal anesthesia (not an epidural.)  They have to puncture the thecal membrane to get to the CSF. This can get around some of the issues of just using the needle and stylet alone..  

Bob

[Nancy T]

Shell--thank you--you are so kind!

Bob--isn't this what she already did? I can't say whether the doctor was a radiologist or an anesthesiologist; I had presumed a radiologist. I have never had spinal anesthesia so am not sure of the difference. She used lidocaine shots to numb the area, then stuck needles in (I presume)--does a catheter go in differently?

She did mention bone spurs resulting from the scoliosis as being problematical. And she tried at least five different spots.

[COBOB]

You could have the LP done by an anesthesiologist.  They can pass a catheter just like doing a spinal for anesthesia.  This is can pretty effective for a difficult case.  Some people have disks and bone spurs that can impinge on the thecal sack and the needle ends up in an area without enough fluid to sample or in an area that lacks enough pressure to flow.  

Bob

[sllowe]

I can't believe my eyes, Nancy! I don't know why this is. Maybe the others will. I just wanted you to know how sorry I am that it didn't work out. And, you were so prepared!

I'm sorry, Nancy, truly I am.
-Shell