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551343 tn?1506830518

Lumbur Puncture/ST results

Hi well I finally got the courage to go for a lumbur puncture (spinal tap), it was NOTHING, I didnt feel a thing what a baby getting worked up over nothing. I didnt even have the headache. However 3 days after the procedure it was really hot in the UK, and I was soooooooooooooooooooo ill I thought I would die with the sensory and pain that attacked me, I even had to have the doctor out twice, as I couldnt walk my leg had gone so weak and the pain in the rest of my legs and arms etc were 10fold. Anyway it did finally calm down thank god it took nearly 3 weeks.

Well waited 4 weeks no results so chased the neurologist secretary. I have an appointment to see the neurologist on the 10th August received a letter and it stated:

Which has come back with inflammation but the pattern of inflammation indication that the inflammation isnt coming from the nervous system but is a general affect. ....................................

Any ideas what this means. Surely if it is showing inflammation it would be from the CNS? What does he mean BUT IS A GENERAL AFFECT. Is he saying there was inflammation but it is just general inflammation??

Surely any inflammation coming from the area of the spine and nervous system would not just be nothing, would just a normal virus show in the LP results?

Could the inflammation just be a red herring?

I am fed up really as I am getting progressively worse, over the last 2.5 years I havent had any relief, and now its just constant, some good days and some awful days, the prickling, tingling, buzzing is driving me mad today in my legs and my left index finger has been numb with weird pins and needles for a week. So fed up, when will it end and when will someone say YES WE FINALLY KNOW WHAT IT IS.

One of my friends was told in January of this year that with 2 MRIs she had MS because the MRI showed lesions, she was upset obviously, then her neurologist sent her for a LP, and it has just come back NEGATIVE, and she has now been discharged from the neurologist and told she probably has M.E. instead and to basically get on with life.

So is the lumbur puncture any good, I mean how can she have LESIONS lots of them apparently and then told no.

So I am wondering if I should have bothered with my LP I am just so confused.

Sorry for rant.

17 Responses
505094 tn?1240317431
I certainly feel for your frustration and hope you get some answers.  I've heard others in the forum mention that after certain medical procedures their symptoms increase.  I had a colonoscopy in early April and a week later my body was totally inflamed. I'm now going on week 5 with a low grade fever and an inflamed body.  My doc has done a whole bunch of tests (Lyme Disease, Mono, Rheumatoid Arthritis etc.)  It's so hard to wait for those tests to come in.  I usually call the doc after 4 days and tell her that I want to know what the results were, yes or no.  In the US many docs don't call when the results come in negative or they don't know what is going on.
Can you get copies of your tests?  We can in the US and I've found it helpful to actually see what the reports say.  Can you call the neurologist before your appointment and find out what he/she? meant in the letter.  It doesn't say much to me.
I also don't understand why your friend was let go from that neurologist.  A new neurologist?
Hugs to you.
848718 tn?1257138801
wow -- I don't understand why your friend's neurologist dismissed her just because of the LP. I'm not an expert by any means, but my neuro (and everything I've read here and elsewhere) says that an LP can confirm a dx of MS,  but can't rule it out. So having a normal LP doesn't mean there's no MS. The statistic I seem to recall is something like half of MS patients have a normal LP.

And I'm sorry, I don't have any idea what your doc's letter meant about inflammation. But I'm happy that you didn't have any problems getting the LP and avoided the dreaded spinal headache!

Hang in there!!
198419 tn?1360242356
Hi Mrs. A,

Nice to see you back.  

That sure was a detailess ltr. and didn't say much. My guess is that what they saw in the CSF, they too found in the blood serum. So it's not originating from the CNS or it would have only been in your spinal fluid.

Was there nothing else on that ltr.? Glad you are going to the Dr. in August.  Gives us all time to help you line up some questions.  

I don't think it was a waste to do the LP, but it shouldn't decide your fate, like it did your friends.  Sorry she didn't get any help w/the cause.

We'll not let you throw in the white towel just yet, Mrs. A.
ttys,
shell

  

572651 tn?1530999357
Hi Mrs. A,
Good for you to tough it out and finally have the lumbar puncture done.  The heat you've been having in the UK sounded horrendous and I bet that was the prime cause of your recent problems.

You may want to refer your friend (and your self) to this health page that explains why the LP can be negative yet you still have MS.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36


Don't give up yet,
Lulu
551343 tn?1506830518
Hi Shell what questions should I ask my neurologist. I take it I need to know if they found the inflammation in the blood as well for it not to be in the CNS. I re-read the letter and it doesnt say anything really does it.  

There must be something going on with my nervous system, I mean where does all the prickling, fizzing and tingling and sharp pains come from otherwise. I was wondering if I am suffering from functional or dissociative neurological disorder, I believe that is a real illness with the brains software not working, but when I read up on it, I dont match really, as I get problems on my left and right side and sleep well. I am willing to listen to any thoughts I just want to get well again.

So any questions I can ask can you advise me?

Lulu, thank you for the link, that is very very informative I have sent it to my friend, and she is going to ask for a 2nd opinion.

I have now paid to have all my medical notes copied, and when I get them I am going to sit down and write a complete timeline from the day my records started to see if there is a common denominator. I do know that about 30 years ago I had really bad pins and needles in my left arm from the elbow down for weeks but it was dismissed by the GP. I only remember this because a year before that I had a full hysterectomy due to endometriosis and because I was so ill I had to have several pints of blood, and me being nervous thought the pins and needles were from the blood LOL how daft is that.

Anyway guys any help would be appreciated, I want to go well armed this time. xxxx
198419 tn?1360242356
Hi Mrs. A,

Going to keep this bumped up for you so we can put together a list.

First questions for appt.:

*What do the results of the LP say? What was tested?

*What conditions have been ruled out so far? What's left that could cause (list your symptoms).

Oh, and one for you Mrs. A.  - Do you have a timeline put together yet?

Anyone else have thoughts for the appt.?


Avatar universal
i can everyone this that is the worst test i have ever went through. i had it done and i noticed a day later i had the worst headache of my life i took pills thinking it would leave omg it worse as the days went on. what i was experiencing is my spinal fluid was leaking. i had to go back in and draw blood to make a blood patch for my spine. if i was anybody please avoid at all costs.
505094 tn?1240317431
I remember reading some very helpful info on doing a timeline and it's in our health pages,

How to write a timeline
by atino, Aug 18, 2008 10:02AM

I hope this helps.  Hugs, Charley
505094 tn?1240317431
Sorry about the typo.  I really out of it these days, hugs again
551343 tn?1506830518
Thanks for your help guys.

I have asked for my medical notes which will take about 10 days to copy I expect they are HUGE LOL.

From that I will then be able to do a more precise time line. I have made an appointment to see my neurologist on Monday privately as I then will get 25 minutes not a quick 10.

So I will write down some questions to ask him.

I think he just needs to realise that I am determined to get well and want to go back to work. I dont know if I can just lay on my settee for another 2 years without going totally insane. Why would anyone want to be ill anyway.

I did do a time line before which was very interesting as I remembered that i had really bad pins and needles in my left arm and hand for ages when I was about 30, and it lasted for ages so was this the first attack? This happened just over a year after a major operation hysterectomy had endometriosis and after lots of research I found a link between endo and MS.

I found the time line tutorial Charley thanks, I have sent it to my friend as well.

Your  BRILLIANT. Thank you all.xx

Avatar universal
Hi Mrs A

CAn you tell me what your original symptoms were ? was it just skin prickling ?

I too have been offered LP but VERY sceptical about it

Thanks
572651 tn?1530999357
Hi there and welcome to the MS forum.  May I suggest that you start a new thread to discuss your symptoms.  I doubt that many will see you question here at the end of Mrs. A's conversation.

Are you suspecting that you might have MS?

Don't be skeptical of doing the Lumbar Puncture  if that will get you a step closer to a diagnosis.  Unfortunatlye I have recently heard that as many as 30% of patients do experience the dreaded headache afterwards, but that can be fixed.  

I hope we'll see you around,
Lulu
867582 tn?1311627397
I share your frustration in not getting a diagnosis despite worsening symptoms.  Seems like once they get your insurance numbers, that's where the caring ends.  After that, no one seems to really focus on getting answers (except the patient).

No, you weren't being a baby fretting about the spinal tap.  As I have previously stated, most spinal taps yield little-to-no info and they can be risky depending on who does them, their knowledge and degree of caring.  I had a horrendous spinal tap which yielded no info and caused me to be the sickest I had ever been in my life - requiring a blood patch days later despite the fact that, like you, I had absolutely NO HEADACHE!!!

I have noticed a trend toward the normalization of results (even when tests are slightly abnormal) in modern medicine today.  If something is slightly abnormal, they call it normal.  I don't know if this is lawsuit protection or what.  When my pulse oximetry study came back slightly abnormal, my neurologist called it "normal."  I got a copy of the slightly abnormal study result and pursued it:  The result is that I am now on much-needed CPAP:  Wouldn't dream of sleeping without it due to my many scary nighttime breathing experiences (called "normal" by my neuro - poppycock!!).

Always get all test results yourself - don't ever take your doctor's word that something is completely normal.  Then pursue it on your own if necessary!

WAF
Avatar universal
hi lulu

Thanks for ur reply - only one i got !

My neuro says i dun have MS - its just all over body prickling -

It seems emails ppl give are starred out here - do you know why ?

John
147426 tn?1317265632
Hi, I would like to weigh in here on a few points.

First, when the LP shows inflammation that is a "general effect" I think they would be referring to Oligoclonal Bands that are appearing in BOTH the Serum and the CSF.  This means that all or most bands that appear in the CSF ALSO appear in the serum, so it can be presumed that they were produced by the immune activity out in the body and "seeped over" into the central nervous system.  That really is not an unusual occurence.  It does NOT - I repeat NOT - indicate that a person does not have MS.  It is the same as a spinal tap result that is negative in the context of MS.

There is NO dictum in the medical literature that states that you can't have MS with a negative LP.  NONE.  The McDonald Criteria do not in any way state or imply that a person must have a postive LP in order to qualify for the diagnosis.  The MS experts that I trust have stated categorically that a negative LP does NOT negate the diagnosis of MS.  It is used as supporting evidence only when it is positive.  Any neuro that "removes" the diagnosis of MS when an LP is negative is not very clued in to the realities of the disease.

There was one study back about four years ago that found that 100% of MS patients had 2 or more O-Bands.  This must have stuck in everyone's mind.  However, no study since has found that result.  The studies very from about 3% to 10%.  The older studies found about 20%.  The cfurrent things I am reading about MS, and published by respected MS organizations are still quoting the 10% to 20% of MS patients will have less than 2 O-Bands.

What many neurologists fail to remember when they read studies that show very high numbers of MS patients with positive O-Bands is that studies are done under the most ideal of circumstances, especially the ones done about three years ago.  That is when they were studying a new technique for helping O-Bands show up, called "isoelectric focusing."  In general, the test for oligoclonal bands is a technically difficult one to run and to interpret.  In a study all parts of the test are optimized, the tech is well-trained and the the technique is performed perfectly.  In the real world the ability of lab techs varies, the equipment may or may not be optimal, and they may or may not have switched to the newest technique.  So studies done just by looking back at the result in people's charts have not shown such a high rate of positivity.

The IgG Index is also a test that can show more immune activity in the general body over the CSF or vice versa.  Neither of these tests should be interpreted as indicating that all the inflammation in the body is outside the CSF.

SOAPBOX ALERT!!

On top of the technical difficulties above, there are people in the field that are working to "raise the bar" to make the positive result of O-Bands "four or more."  Basically this appears to be the Mayo Clinic which has huge influence in the medical community.  Now, the following comments are my own opinion.  I believe that influential MS researchers at the Mayo have a political agenda.  This agenda is to make the diagnosis of MS more difficult to qualify for, thereby reducing the number of people on DMDs.  Why this is so important, I have no clue.

Beginning several years ago, we began seeing articles by Mayo doctors that people with "Benign" MS should be watched without being given DMDs.  The reasons they gave for this were several.  First they maintained that a person with benign MS would continue to have a benign course and the DMD was "over-treatment" and thus, unnecessary.  They also maintained that this wasted medical dollars.  They also stated that someone with "mild" symptoms was likely to be non-compliant with DMDs and this was also a waste of money.  And, finally, they made some argument that the side effects of a DMD were reason to be cautious, but since few serious side effects had been reported, they were a little vague about this last one.

Subsequent studies showed the Mayo stance to be foolhardy.  First, studies have showed conclusively that early treatment is more efficacious than the same treatment given years later.  The time to intervene in MS is as early as possible.  The other finding that blew the Mayo out of the water was that about a third of people who started out with "benign" symptoms will suffer major disability along the line both with physical and/or cognitively.  So,  the backers of the "withhold" therapy from mild sufferers had to eat their words.

Then, all of a sudden, we start hearing that they have raised the number of O-Bands which will count as a "positive" result for the diagnosis of MS from two or more to four or more.  I have yet to see any studies supporting this.  I personally believe that this is just another way to get fewer people on the DMDs.  I don't understand this, but their researchers have stated that they believe MS to be way over-diagnosed.  That is hard to swallow when we have so many people here that were sent away from the Mayo to "live with it" who were diagnosed by someone else.

There is also a discussion of how to do a Timeline on the Health Pages:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

Back to the LP:  If the person shows two or more attacks of symptoms that are suggestive of demyelination and there is evidence on exam or testing that two or more different areas of the CNS have been affected AND there are brain lesions consistent with MS, then the diagnosis of MS can be made if the mimics have been ruled out.  Just one brain lesion will shoot the odds skyward (to 80% or more) and two will take the odds to over 90%.  The LP will support the diagnosis if it is positive (an elevated IgG Index and/or 2 or more O-Bands).  If the LP is negative then the doctors don't have any further info, but it does NOT counter any of the other diagnostic findings!

Thank you for letting me rant.

Quix
551343 tn?1506830518
Rant away LOL. I found your post very useful.

The one thing that bothers me why would I have inflammation in both CNS and Serum what could it be and why is no one bothered to find out?

Secondly I have since found out from copies of my notes letters from neurologist to my GP.  One confirms more or less inflammation with subtle changes in the T1 which would indicate a demylination event, and then my last MRI he states there was definitely a lesion in my C5/C6. Also he confirmed that the VEP TEST I had was positive to ON, and a demylination event probably when i went blind in Brazil about 9 years ago.

So if I have 2 areas of my CNS showing lesions does this mean MS or something else?

I just want to get well, fed up of being ill and getting worse.
559187 tn?1330782856
So, when are they going to start you on a DMD?  Seriously.  My neuro follows the same line of thinking that Quix's neuro follows.  My doc said he could see the direction my case was going and based his decision on his 25 years of experience with MS patients to finally diagnose and treat me for MS.  I hope your doctor will do the same.  

Wishing you some closure on this crazy journey of yours.

Julie
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