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Repeat Lumbar Puncture
Hi. I've been being tested over the past three years (or so) to either rule MS in or out. I have 3 brain lesions and have had 1 negative lumbar puncture. Since completing my third negative nerve conduction / EMG testing, my neurologist is now suggesting a second lumbar puncture (yikes).
What I'm wondering, is if any others have had a negative LP at first but then had a repeat LP come back positive? I really hate to go through this again for nothing.
Thanks,
Laura
What I'm wondering, is if any others have had a negative LP at first but then had a repeat LP come back positive? I really hate to go through this again for nothing.
Thanks,
Laura
I'm happy you all "get" my rather dry sense of humor...I know I can come across as NOT funny... Please don't all jump in to agree. :-)
My husband and I both find a sense of humor can sure help us get thru things..sometimes I'm not sure if I'm laughing whilst crying or crying whilst laughing...
And honestly, when the Neuro said he was 99% sure we were looking at ALS, I almost went to my knees. Not only knowing of it from tv and reading, but working in the medical field, I had personally encountered ALS. I will never forget that moment.. I even recall the shirt hubby was wearing. Odd what one recalls regarding certain things, eh??..
I can also understand it seeming odd that the MS dx was "good news". But as we didn't have the choice of "Good news, you're fine, you're symptoms are gone, and don't wake up because you're dreaming..." (haha) We took the news as best we could.
Take care all, and here's to hoping limboland gets left off the map..
C
My husband and I both find a sense of humor can sure help us get thru things..sometimes I'm not sure if I'm laughing whilst crying or crying whilst laughing...
And honestly, when the Neuro said he was 99% sure we were looking at ALS, I almost went to my knees. Not only knowing of it from tv and reading, but working in the medical field, I had personally encountered ALS. I will never forget that moment.. I even recall the shirt hubby was wearing. Odd what one recalls regarding certain things, eh??..
I can also understand it seeming odd that the MS dx was "good news". But as we didn't have the choice of "Good news, you're fine, you're symptoms are gone, and don't wake up because you're dreaming..." (haha) We took the news as best we could.
Take care all, and here's to hoping limboland gets left off the map..
C
Well MS is definitely a better diagnosis than ALS but I'm not sure I would call it good news. I keep hoping a doctor will wave a magic wand and just make me better, but I guess their magic wands don't work any better than mine.
My journey started with a hypothyroid diagnosis as well (not Addison's though). This actually slowed the diagnosis process for me because it was assumed that everything was caused by the low thyroid until levels were good but I was not.
I have essentially fired my first neurologist and am waiting for an appointment with a different one since the first was just going in circles and getting nowhere. She decided not to do another lumbar puncture or anything else and to just wait until I get worse. I've only got one limb left that works properly and I'm not willing to get worse in order to get better.
Limboland is no fun. "It's good news, it's MS!", is almost welcome at this point.
Laura
My journey started with a hypothyroid diagnosis as well (not Addison's though). This actually slowed the diagnosis process for me because it was assumed that everything was caused by the low thyroid until levels were good but I was not.
I have essentially fired my first neurologist and am waiting for an appointment with a different one since the first was just going in circles and getting nowhere. She decided not to do another lumbar puncture or anything else and to just wait until I get worse. I've only got one limb left that works properly and I'm not willing to get worse in order to get better.
Limboland is no fun. "It's good news, it's MS!", is almost welcome at this point.
Laura
She looked around, it was just us, and said, "Its good news, it's MS!".
"I have good news and bad news for you. The bad news is you have MS. The good news is you have MS." :-)
Anyone who has spent any time in Limboland knows...
Kyle
"I have good news and bad news for you. The bad news is you have MS. The good news is you have MS." :-)
Anyone who has spent any time in Limboland knows...
Kyle
I can only add I hope everything goes as well for you as it can.
My hubby's story in a nutshell is:
Diagnosed Addisons disease, hypothyroidism, hbp.
Noticed left leg weakness with noticeable calf muscle wasting.
His Endo Dr had hubby try a couple of quick tests, walk on toes, walk on heels...at same time I mentioned hubby has an aunt with MS.
Endo Dr said a 4 letter word under his breath, next morning we were at a Neuro Dr.
Neuro did nerve conduction and hubby's left leg was "dirty", severely so. Neuro said, "I'm a straight shooter, I hate to say this, but I am 99% sure you have motor neuron disease, most likely ALS/Lou Gehrig's disease.
Needless to say I was devastated, and said, "No way!" As if I am in control..but it is what happened.
Dr did say since prior MRI was 3 yrs old on hubby we would repeat. And he wanted an LP.
Old MRI had showed 1 "abnormal corona radiata". But no Dr had mentioned it. I noticed it, looked things up about it, but didn't find much. Plus hubby had finally had Addisons dx, and was feeling better.. I am usually like a dog with a bone on our health issues (Well on my family's..on mine I admit I slack...). Looking back I am surprised at myself that I didn't press for more info on that MRI...
The new MRI showed several lesions in brain & cervical spine. LP came back with 9 o-bands.
3 long weeks later at appt to get the above results, nurse called us back, said are you all ready?
I replied, I don't know.
She looked around, it was just us, and said, "Its good news, it's MS!".
Now I know that sounds crazy...but compared to ALS, for us it was good news.
Neuro said in 20+ years he had never seen a case of MS present like hubbys..
Which just affirms the old MS is the great impostor saying...
Take care, and let us know how things turn out...
C
My hubby's story in a nutshell is:
Diagnosed Addisons disease, hypothyroidism, hbp.
Noticed left leg weakness with noticeable calf muscle wasting.
His Endo Dr had hubby try a couple of quick tests, walk on toes, walk on heels...at same time I mentioned hubby has an aunt with MS.
Endo Dr said a 4 letter word under his breath, next morning we were at a Neuro Dr.
Neuro did nerve conduction and hubby's left leg was "dirty", severely so. Neuro said, "I'm a straight shooter, I hate to say this, but I am 99% sure you have motor neuron disease, most likely ALS/Lou Gehrig's disease.
Needless to say I was devastated, and said, "No way!" As if I am in control..but it is what happened.
Dr did say since prior MRI was 3 yrs old on hubby we would repeat. And he wanted an LP.
Old MRI had showed 1 "abnormal corona radiata". But no Dr had mentioned it. I noticed it, looked things up about it, but didn't find much. Plus hubby had finally had Addisons dx, and was feeling better.. I am usually like a dog with a bone on our health issues (Well on my family's..on mine I admit I slack...). Looking back I am surprised at myself that I didn't press for more info on that MRI...
The new MRI showed several lesions in brain & cervical spine. LP came back with 9 o-bands.
3 long weeks later at appt to get the above results, nurse called us back, said are you all ready?
I replied, I don't know.
She looked around, it was just us, and said, "Its good news, it's MS!".
Now I know that sounds crazy...but compared to ALS, for us it was good news.
Neuro said in 20+ years he had never seen a case of MS present like hubbys..
Which just affirms the old MS is the great impostor saying...
Take care, and let us know how things turn out...
C
Lumbar Puncture is loosely used for any test where they take fluid out of the spine. They are usually testing your pressure when you have a LP at an ER not necessarily o-bands which is what they look at with MS. Testing o-bands takes awhile.
Alex
Alex
Yanno...It's good to see these kinds of things and see how treatment/labs/info varies across the country.
I had to go to the ER once when I couldn't walk or see. They did an LP right on the ER table and we had results within the hour, I'd say. I'm way baffled to see that it takes such a long time or can be such an arduous process to get tested or get results. I hate that there are such delays for people. :-(
Curiously, the ER doc did not know (or realize) I had MS before the LP. When he came back, he was holding the results and asked me hesitantly if I knew I had abnormal spinal fluid. (He may have even mentioned MS. I think he was hesitant to deliver that kind of bad news since I was in the ER).
I hope hope hope that your next LP goes smoothly and is not a waste of time. Good luck!
I had to go to the ER once when I couldn't walk or see. They did an LP right on the ER table and we had results within the hour, I'd say. I'm way baffled to see that it takes such a long time or can be such an arduous process to get tested or get results. I hate that there are such delays for people. :-(
Curiously, the ER doc did not know (or realize) I had MS before the LP. When he came back, he was holding the results and asked me hesitantly if I knew I had abnormal spinal fluid. (He may have even mentioned MS. I think he was hesitant to deliver that kind of bad news since I was in the ER).
I hope hope hope that your next LP goes smoothly and is not a waste of time. Good luck!
Thanks gals.
Hopefully if I have to have another LP it won't be a waste of my time and headache. At least my oldest daughter has volunteered to wait on me this time.
I always said that I would never have another LP but it has been a couple of years and I'm still waiting for a diagnosis.
My neuro is very thorough and seems like she really wants to rule out MS but hasn't been able to. I just want to get off this roller coaster ride now, no matter what the diagnosis may be.
Thanks again,
Laura
Hopefully if I have to have another LP it won't be a waste of my time and headache. At least my oldest daughter has volunteered to wait on me this time.
I always said that I would never have another LP but it has been a couple of years and I'm still waiting for a diagnosis.
My neuro is very thorough and seems like she really wants to rule out MS but hasn't been able to. I just want to get off this roller coaster ride now, no matter what the diagnosis may be.
Thanks again,
Laura
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Hi and good question, though i honestly don't know the answer. I can recall a few where their second LP gave different result but I think it was more to do with the first LP not done correctly from memory.
I had a read through our health page but it doesn't really answer your question either...
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
If i get the time later today, i'll see if I can find something that does and get back to you.
Cheers.......JJ
I had a read through our health page but it doesn't really answer your question either...
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
If i get the time later today, i'll see if I can find something that does and get back to you.
Cheers.......JJ
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My first one had 12 o-bands so I never had to have another. They told me I would have to keep having LPs until one proved I had MS. Some MS Specialist do not do LPs. Some do them to diagnose MS which does not fit the standard of RMMS. I had abnormal everything MRIs, vep, etc. but I had had symptoms all my life so they did the LP on me.
My 12 o-bands worked with someone having MS for over forty years.
If your LP was three years ago I might consider it. If it was more recently you may come up with the same number of o-bands.
If you are like me and very chicken they can sedate you. They can use the sedation they use for colonoscopies. They did for me. It was the only way I would have one.
The real answer is do you have to have a positive LP for MS the answer is no. Many people with Ms have negative LPs. Will your current Neurologist diagnose with MS with out a LP is the real question. There is a possiblitythey may do another and the answers the same. The only good thing is the tests are more sensitive to o-bands than they were say 5 years ago. A 0 o-band five years ago could be a two today. Also ask where they send the tests off to. For me they did several labs across the country. This is not a test every local hospital lab can do. The Mayo is the main lab. I am at Duke and duke does not do this test. They sent mine out to several labs. It took six weeks.
Alex