Lumbar Puncture Negative so now what do I do with all the symptoms?

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cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 9/13/2006 8:10 PM (GMT -6)   
Finally received results which show negative on the bands. The Neuro said I will be happy to discuss this with you when you next visit. So that is next February.....So does anyone know whether you can have lesions in your brain, ms symptoms but a neg LP?
Back to the Doctor who is back next week and I'm now back to square 1!
I have awful pins and needles in my legs and feet and still have all the symptoms.
I am so frustrated. I have been tested for everything, maybe its "all in my head" lol
Any suggestions?

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/13/2006 8:31 PM (GMT -6)   
Hey Cocoa11

No, i'm sure it's not all in u'r head...if it is i have it too! ;) I'm very curious to see what replies u'll get here because i'm in the same place u are, minus the lp. BTW...did u'r doc suggest the lp to u or did u request it? My doc brought it up, but didn't feel it would render any helpful info, so we decided not to persue it. I'm sorry, i can't answer u'r question. Not that i shouldn't know, but just don't remember. I THINK it's possible to have bands that may be ms or other probs as well, but if i recall correctly it's something like 90%-95% of people with ms will test pos for bands in the spinal fluid. Could be wrong and if so i hope someone will come along and correct me. Best wishes!

rhonda

cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 9/13/2006 8:45 PM (GMT -6)   
Thanks Rhonda

My neuro ordered the LP. I didn't go willingly!
I have read too the same 90-95% have bands and I do not.
Well I'm relieved but that doesn't fix my ongoing medical problems
I'm just not sure what to ask my GP as she relies on the Specialists recommendations.
I will find out in about a week or two when I go to see her.
I feel like I've been thrown into the "too hard" basket. The report on my MRI says and I quote
"There are a number of abnormalities. Firstly there is a distribution of scattered T 2 hyperintensities, which is not typical of the patient's age and not in a distribution that suggests a vascular aetiology. The T2 hyperintensitiies are of heterogenous sizes and shapes, scatterd throughout both hemispheres, and with a predilection for areas of the deep white matter adjacent to the corpus callosum and the body of the corpus callosum itself. No posterior fossa or brain stem lesions are seen and the rest of the spinal cord has not been imaged. Appearances suggest demyelination but the cause, either autoimmune or vascular is not straightforward to distinguish on this limited information."

I wish I knew what was going on with me.

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 9/13/2006 9:31 PM (GMT -6)   
Hi cocoa,
I for one have lesions on my brain, classic ms symptoms and a negative LP!  In all that I've read and been told, the LP is just one of those extra things that can help the diagnosis if it's borderline.  It can be negative in up to 30 % of us with MS.
 
I have secondary progressive but was just diagnosed last Nov.
Take care, i hope you are feeling better soon.
Michelle ><>
 
Don't be so busy doing good
that you neglect to do what's right!


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 9/14/2006 1:29 AM (GMT -6)   
thanks, Shelly
I still probably have ms or something similar. Good to know that there are others that are as confused as I am

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/14/2006 5:24 AM (GMT -6)   
cocoa11 said...
Thanks Rhonda

My neuro ordered the LP. I didn't go willingly!
I have read too the same 90-95% have bands and I do not.
Well I'm relieved but that doesn't fix my ongoing medical problems
I'm just not sure what to ask my GP as she relies on the Specialists recommendations.
I will find out in about a week or two when I go to see her.
I feel like I've been thrown into the "too hard" basket. The report on my MRI says and I quote
"There are a number of abnormalities. Firstly there is a distribution of scattered T 2 hyperintensities, which is not typical of the patient's age and not in a distribution that suggests a vascular aetiology. The T2 hyperintensitiies are of heterogenous sizes and shapes, scatterd throughout both hemispheres, and with a predilection for areas of the deep white matter adjacent to the corpus callosum and the body of the corpus callosum itself. No posterior fossa or brain stem lesions are seen and the rest of the spinal cord has not been imaged. Appearances suggest demyelination but the cause, either autoimmune or vascular is not straightforward to distinguish on this limited information."

I wish I knew what was going on with me.
 
Here are some random thoughts:
 
Most often...but not always...the o-bands will appear in spinal fluid, indicating MS.
 
Not all medical conditions ARE fixable.  There may not be much that CAN be done except to treat symptoms like spasticity, if it becomes so severe or troublesome that it needs treating. But doctors don't like to treat symptoms without knowing the cause, because sometimes the treatments can cover up developing conditions, taking longer for them to become evident or sufficient enough for diagnosis. So they want to watch and wait and see if things develop, before treating one thing when it might be something else.
 
The line, "No posterior rossa or brain stem lesions are seen and the rest of the spinal cord has not been imaged" suggests to me that you might ask for an MRI of the spine -- sometimes (but not always) lesions show up there that don't show up in other areas.
 
The line, "There are a number of abnormalities" suggests that...well, "there are a number of abnormalities".  Lesions can be caused by all sorts of things -- not just neurological conditions.  Maybe you need to be seeing a different specialist, like a rheumatologist, or -- I can't remember the name of the specialty, but someone involved with vascular and circulatory problems. Your general practioner would know, if you ask about this.
 
Not knowing what is going on is extremely frustrating, to be sure. But it would also be not a good thing to insist on treatment for one disorder, or have a doctor decide that it's "X Disease" only to find out that instead it is "Y Disease" and the treatments for "X" have either been wasted, or have seriously compromised the treatments for "Y" -- which is why doctors are often very cautious about treating anything until they are certain they know what they've got.  And there's plenty of uncertainty in your MRI results, for them to not want to call it anything just yet!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


tinydancer
New Member


Date Joined Apr 2006
Total Posts : 10
   Posted 9/14/2006 9:21 AM (GMT -6)   
Hi Cocoa,

I have been dx since 03. I to had neg lp. But with symptoms, and with each new mri of brain more and more lesions showed. Also office exame doc would notice signs I didnt. So I too was confused at first but after months going by and noticing that new symptoms would come on and having flares one after another, it was ms.
I was on copaxone for 2 years now on betaseron for 8 months.
Hang in there this is a great forum, friendly people and lots of experience with ms here.

Tinydancer

zanadu
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 9/14/2006 10:15 AM (GMT -6)   
Hey Cocoa,

I am also waiting until Feb. for additional MRI's. I had high inflammation count and O bands present on LP. My neuro said I was still in "a grey area" and only time will tell. That's hard to take when you are having symtoms. So I just wanted to let you know you're not alone and hang in there. The people on here are wonderful for the information they give.

Good luck and keep us posted:)

zanadu

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 9/14/2006 11:05 AM (GMT -6)   

I had a neg LP but lesions were shown on the MRI in my brain and spinal chord.  My VEP came back abnormal also.  My neuro said that with all my symptoms, positive MRI and abnormal VEP that I was still dx'd as having MS even with a normal LP. 

Christine


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 9/14/2006 5:11 PM (GMT -6)   
Thanks everyone for your suggestions and especially for your concern. As I have said this is a great forum with lots of good info and I am learning so much from everyone. I go back to the GP on the 25th so we will have to look at sending me to a vascular specialist. There is definitely something going on upstairs (in my head) I still have pins and needles in both legs and feet and also have a shooting tingling down my right leg which occurs about every 4 seconds and it doesn't go away if I stand sit or lay down. My right hand is still a bit numb and I have noticed that when I pick up a glass or milk carton etc and tip it my hand starts to tremor. I'm using it little as possible in case I drop something! I'll let you know what happens. I guessed that the Neuro is doing a wait and see what happens next and that is ok but it doesn't stop the pain in my face or any of the other symptoms. I had a feeling that the LP wasn't always positive if you were having ms symptoms and lesions and you have proved me right.
Thanks again
Cocoa
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