2 hours isn`t long enough

[Inactive_User]

@PatB

I think you can get ‘o’ bands after the first LP that was negative.

Copied this from MS Trust website:

Oligoclonal bands - the immune system produces antibodies to fight infection. In MS, antibodies cross the blood-brain barrier and attack the myelin surrounding nerves. As a result, the level of antibodies in the cerebrospinal fluid of someone with MS is higher than it should be and is higher than the level in the blood, a sample of which is also analysed.

Surely this means that antibodies could cross the blood-brain barrier AFTER the first LP so could therefore show up in 2nd LP?

This is obviously why some people have more than one LP.

Hang on in there Poll. The headache can surely only get better.

Pat x

Hi Pat, mmm, interesting. The head feels better now. I hope I can get and stay up tomorrow.

luv Pollx

[Upytupy]

Hi Poll, reading the post above this one, it sounds like your head is a little better now. Long may that continue. However,on a positive note, you are at home, been through the lp, things can only get better. Hang in there now. Just as a lay person and reading the comment right above this one, I agree with the statement, why should one negative lp mean you can’t have a positive one at some point in the future, things change and false negative results do happen. Doesn’t mean yours will be positive of course but I don’t think because you once had a negative result automatically means this one will be too. Cheryl:-)

[Inactive_User]

[quote=“MS43”]

@Tree65

Hi Poll Sorry that you’ve got that bl**dy headache! I was lucky - I only lay down for an hour afterwards and had no headache at all. I think it is all down to the skill of the person who does the LP. The guy who did mine was obviously very proficient as I didn’t feel a thing. Please rest until you feel better Poll! Teresa xx

It may sound paranoid, but I am wondering if they gave me a painful, pointless test to shut me up! Thing is, it won`t!

luv Polllx

[/quote] They don’t realise that they are dicing with danger Poll - with the relentless, never-to-be-beaten Poll! Go for it and don’t stop until you achieve your aim - that is, a bl**dy diagnosis. It’s not a lot to ask is it? I wish these neuros would read these posts. Then maybe they’d flaming get it! Love Teresa xx

[ggood]

Hi Poll,

Sorry but cannot find anything on if a spinal tap is negative it might be positive next time.

Only Spinal Tap

A spinal tap (also known as a lumbar puncture) is a procedure whereby a sample of cerebrospinal fluid (CSF) is taken from close to the spinal cord. At the same time a blood sample is taken usually from the arm and a quantity of blood serum is isolated. Both of these samples are then processed using a technique called electrophoresis. A positive spinal tap will produce oligoclonal bands in the CSF but not in the blood serum. These bands indicate a type of immune system activity. Although uncomfortable, the spinal tap itself is often not too painful, whereas in the period following the tap, the patient may experience dizziness, nausea, vomiting and severe headaches, occasionally for as much as a week. There are a few rare but serious side-effects of spinal taps.

95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.

The primary purpose of CSF analysis should be to rule out other conditions than multiple sclerosis. Although they can be highly suggestive of MS, they do not, in themselves, provide definitive disgnosis. Indeed, I myself, was given a definite diagnosis based on medical history, clinical examination, MRI and evoked potential tests - I declined to have a spinal tap.

Before MRI, electrophoresis of spinal fluid played a major role in supporting diagnoses and underpinned the Poser criteria. Now, however, these criteria have become overshadowed by MRI and, if an MRI is positive, the new diagnostic criteria (2001) allow for a definitive diagnosis without laboratory support. The old “Laboratory supported Definite MS” has been dispensed with.

However, CSF analysis technology is still advancing and researchers continue to look for definitive molecular markers of MS. Should they find such a marker, spinal taps will reassume their importance. Other researchers are looking into urine and blood for markers and we can hope that they are successful and spinal taps become completely unnecessary to the diagnosis of multiple sclerosis.

George

[Inactive_User]

hi Poll,

Sorry you suffered with the LP; I did too, quite traumatic.

I drank lots of fat coke, through a straw and lied flat. As soon as my head lifted from the pillow, bang, the worst headache ever.

There was slow improvement each day and by the end of day 8, it had gone.

I just kept concentrating that the ordeal may be awful but was needed for a diagnosis.

It did give me that and i pray, along with us all here on the forum, that it gives u that too.

x

[Lost_Angel]

Hi Poll

Sorry that you were left with that rotten headache after the LP like they hadn’t put you through enough already. Hope you are feeling a bit better today. I was lucky and didn’t have one, wasn’t even mentioned but if it is now I will tell them no way.

Love Yvonne xx

[Inactive_User]

@ggood

Hi Poll,

Sorry but cannot find anything on if a spinal tap is negative it might be positive next time.

Only Spinal Tap

A spinal tap (also known as a lumbar puncture) is a procedure whereby a sample of cerebrospinal fluid (CSF) is taken from close to the spinal cord. At the same time a blood sample is taken usually from the arm and a quantity of blood serum is isolated. Both of these samples are then processed using a technique called electrophoresis. A positive spinal tap will produce oligoclonal bands in the CSF but not in the blood serum. These bands indicate a type of immune system activity. Although uncomfortable, the spinal tap itself is often not too painful, whereas in the period following the tap, the patient may experience dizziness, nausea, vomiting and severe headaches, occasionally for as much as a week. There are a few rare but serious side-effects of spinal taps.

95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.

The primary purpose of CSF analysis should be to rule out other conditions than multiple sclerosis. Although they can be highly suggestive of MS, they do not, in themselves, provide definitive disgnosis. Indeed, I myself, was given a definite diagnosis based on medical history, clinical examination, MRI and evoked potential tests - I declined to have a spinal tap.

Before MRI, electrophoresis of spinal fluid played a major role in supporting diagnoses and underpinned the Poser criteria. Now, however, these criteria have become overshadowed by MRI and, if an MRI is positive, the new diagnostic criteria (2001) allow for a definitive diagnosis without laboratory support. The old “Laboratory supported Definite MS” has been dispensed with.

However, CSF analysis technology is still advancing and researchers continue to look for definitive molecular markers of MS. Should they find such a marker, spinal taps will reassume their importance. Other researchers are looking into urine and blood for markers and we can hope that they are successful and spinal taps become completely unnecessary to the diagnosis of multiple sclerosis.

George

Thankyou George, it is very kind of you to try to help explain what`s what re lps. I appreciate the time you spend doing this for me.

luv Pollx

[Inactive_User]

@Clare

hi Poll,

Sorry you suffered with the LP; I did too, quite traumatic.

I drank lots of fat coke, through a straw and lied flat. As soon as my head lifted from the pillow, bang, the worst headache ever.

There was slow improvement each day and by the end of day 8, it had gone.

I just kept concentrating that the ordeal may be awful but was needed for a diagnosis.

It did give me that and i pray, along with us all here on the forum, that it gives u that too.

x

Thankyou Clare. Yes, lets hope it gives me what I want.............a dx of PPMS..better than HSP, as ive said before.

luv POllx

[Inactive_User]

@Upytupy

Hi Poll, reading the post above this one, it sounds like your head is a little better now. Long may that continue. However,on a positive note, you are at home, been through the lp, things can only get better. Hang in there now. Just as a lay person and reading the comment right above this one, I agree with the statement, why should one negative lp mean you can’t have a positive one at some point in the future, things change and false negative results do happen. Doesn’t mean yours will be positive of course but I don’t think because you once had a negative result automatically means this one will be too. Cheryl:-)

Hi Cheryl, cheers for your reply. Yeh, I know, but Ggood does seem to know a lot about lps. Just wish I could get a frim dx after all these years.

luv Pollx

[Inactive_User]

@Lost Angel

Hi Poll

Sorry that you were left with that rotten headache after the LP like they hadn’t put you through enough already. Hope you are feeling a bit better today. I was lucky and didn’t have one, wasn’t even mentioned but if it is now I will tell them no way.

Love Yvonne xx

Thanks Yvonne. Do you go to neurology in Halifax? If so, who have you seen there?

luv Pollx

[Upytupy]

Upytupy wrote: Hi Poll, reading the post above this one, it sounds like your head is a little better now. Long may that continue. However,on a positive note, you are at home, been through the lp, things can only get better. Hang in there now. Just as a lay person and reading the comment right above this one, I agree with the statement, why should one negative lp mean you can’t have a positive one at some point in the future, things change and false negative results do happen. Doesn’t mean yours will be positive of course but I don’t think because you once had a negative result automatically means this one will be too. Cheryl:-) Hi Cheryl, cheers for your reply. Yeh, I know, but Ggood does seem to know a lot about lps. Just wish I could get a frim dx after all these years. luv Pollx Yeah, I’m keeping my fingers crossed for you. I never did have an lp and tbh my neuro never really pushed me to have one who he did once say I could if I wanted and I declined. Hopefully this will help you get diagnosed. Cheryl:-)

[ggood]

Hi poll,

just to get my stance right, I might be entirely wrong but I think the only chance of you getting a positive is if the lab that did a test in the first place did the wrong test (because they have changed).

Good luck; let’s hope it’s positive

[Lost_Angel]

Hi Poll No not Halifax as you now know. I’ve seen 2 1st didn’t talk to me so asked to see another. Now gone back to first 2 hospitals but both work together with same team

Love Yvonne xx