Re: Spinal Tap needed??

[Guest guest]

, I've had one spinal tap 11/2 years ago March, 2005. My neuro used the results to definetly diagnose my MS. Click on this link to WEB MD and it will explain almost everything about spinal taps. As far as pain is concerned, mine was virtually pain free. It depends on who is doing the tapping. Be sure to hydrate yourself after the procedure to lessen the chance for a spinal tap headache. http://www.webmd.com/content/article/57/66115.htm Good Luck Ed dimas_jen <jennifer.dimas@...> wrote: Thank you all for the info about the MRI's but now it raises a question.... Sometimes I feel like I must not have MS and that they are wrong because I have only had one attack and the used MRI to dx me.How can they do that if it is inconclusive?? If you have a spinal tap does it tell you for sure if you have or do not have MS?? Is it the only for sure test?? What do they look for in a tap?? and how painful is it and are you awake and what are the risks??Thanks to all who can answer!

[Guest guest]

Hi ,

There are numerous tests used in the diagnosis of MS beyond the MRI.

In addition to testing for ataxia, (incoordination or clumsiness of

movement), gait and coordination observing walking heel-to-toe,

finger-to-nose tests, heel/shin test- bring ball of heel onto the knee

of other leg then down the shin, tests for ataxia and cerebellar

dysfunction. L'Hermities sign- tests for lesions on the spinal cord in

the neck. A positive a L'Hermities will generate buzzing, tingling or

electircal shock sensations in one or more parts of the body.

There are numerous others and can be found at

http://www.mult-sclerosis.org/diagnosingms.html

Evoked Potential (EP) tests measure abilities and response times -

visual, brainstem- somatosensory and more.....CT scans can access

areas of the brain not available to MRIs.

My point here is that these tests which are non-invasive can give the

neurologist a good picture of what is going on and the Spinal Tap may

not be necessary. I opted not to have one done since my MS was

diagnosed without it but each should be able to make our own decisions.

Best of luck,

Gigi

-- In low dose naltrexone , " dimas_jen "

<jennifer.dimas@...> wrote:

>

> Thank you all for the info about the MRI's but now it raises a

> question.... Sometimes I feel like I must not have MS and that they are

> wrong because I have only had one attack and the used MRI to dx me.

> How can they do that if it is inconclusive?? If you have a spinal tap

> does it tell you for sure if you have or do not have MS?? Is it the

> only for sure test?? What do they look for in a tap?? and how painful

> is it and are you awake and what are the risks??

> Thanks to all who can answer!

>

[Guest guest]

I don't know if it is a conclusive test. Others will likely have info.

or opinions about it. I can attest to the risks. It's a delicate

operation drawing fluid from the bundle of nerves that is your spinal

column. Risk of permanent nerve damage is legitimate. My wife has had

2 done. The first was many years ago when she was diagnosed with MS.

The second was 2 years ago to check for encephalitis to explain the

excruciating, perpetual headache. A spinal tap can cause an immense

headache in itself, and in 's case it greatly amplified the

headache she already had. The problem is the hole put in the spinal

column by the original needle doesn't close and the slow leak of spinal

fluid causes the headache. A blood patch is the fix. A small amount of

blood is drawn and injected into the spinal column and it closes both

needle holes. needed 3 blood patches, 4 spinal pokes total, each

with its inherent dangers.

dimas_jen wrote:

>Thank you all for the info about the MRI's but now it raises a

>question.... Sometimes I feel like I must not have MS and that they are

>wrong because I have only had one attack and the used MRI to dx me.

>How can they do that if it is inconclusive?? If you have a spinal tap

>does it tell you for sure if you have or do not have MS?? Is it the

>only for sure test?? What do they look for in a tap?? and how painful

>is it and are you awake and what are the risks??

>Thanks to all who can answer!

>

>

>

>

>

>

>

>

[Guest guest]

-

When they were trying to figure out what was wrong with me at the

time of my diagnosis I had a spinal tap.What he said to me was that

the results were a " higher " protein level which may or may not mean

anything?? yes strange but true. But he did say a " high " protein

level is consistent with people with MS but then he said that is not

always the case! So go figure. Then they sent the fluid to a lab to

culture which took about a week and supposedly if it forms some kind

of band that is also " conclusive " to having MS but still does

not " officially " mean you have it. No I am not talking myself out of

having MS but from what I have read there have to be at least 3

contributing factors before they can actually diagnose you and I have

only met 2 out of the many. Anyway I have 4 children and had

epidurals with all, I felt the spinal was pretty much the same thing.

I don't think it hurt just a quick prick on your back...yes you are

awake during the procedure, and the risks are minimal..if you do

decide to have one understand that it is not all inclusive but only

another " maybe " on the search for diagnosis. Lots of " things " cause

lesions to show on a MRI and lots of " things " cause a higher protein

content in your body. I wish you the best of luck!

[Guest guest]

I was diagnosed with "Probable MS" in 1993. I never had a spinal tap. I kept that diagnosis until 1999. Since 1993 I personally felt I had MS so I thought that way. I'm not saying that was the best. My husband who has been on the seen sincea month after my "diagnosis" in 1993. Feels that thinking the way I did is negative thinking. Who knows? I have it and I accept as much as I feel these disease sucks!

-- Re: [low dose naltrexone] Spinal Tap needed??

The spinal fluid is there for a very good reason and it also correlates with the seven energy centers of the body . When you have a spinal tap, it takes your body out of balance or homeostasis. When you have a good balance your energy flows freely and dis-ease cannot exist.

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

There's always another opinion... I'm interpreting Kathy's attitude as "you're better off not knowing"; but if you're anything like me, I was GLAD to have a label and a reason to explain all the strange things that were happening to me. Knowing what I was fighting gave me the confidence to fight it head-on with traditional medicines. I'm still fighting, taking LDN now for the last year, with Copaxone that I've been on for the last 7 yrs without side effects (after 2 earlier yrs of bad reactions to interferon).

I also don't think you need to be a baby about getting a spinal tap. If you trust your neuro, then I'd do everything he wants in order to help him make a definitive diagnosis. Having a spinal tap isn't a pleasant experience, but if you curl in a ball on your side and keep really still, there's only a little pain. Believe me, I've had worse pains in my life - like childbirth! And if you drink plenty of water afterwards and go home to bed, you'll minimize the effects of the spinal tap 'headache', which can be awful for the next 24 hrs, I hear.

Good luck, whatever you decide...

Cheers, Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Kathy LintzenichSent: Wednesday, July 26, 2006 9:49 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Spinal Tap needed??

It is not a definitive diagnosis. There are risks. It can create an exacerbation and prolonged headaches. There are many people who have had them with no ill effects but since it is not definitive, do you want to take the risk? Would you be doing anything differently if it were a definite diagnosis? It can sometimes be a positive thing not to know for sure. I'm not saying ignorance is bliss but the "label of ms" can affect you mentally which also affects you on a cellular level. Mind, body and spirit are all integrated. If you have done all your homework and ruled out everything but ms and seem to have a benign course of something that resembles ms, then.......... Why don't you just take LDN, eat well , supplement, exercise and do some form of meditation. Sometimes if something isn't presenting itself to you, it may be for your highest good. Live each day with a positive attitude and honor your entire being. Hopefully whatever it is will never progress with the LDN. I'm not being irrational. I'm being a realist. This is the best course of action you have with what we have available right now. Don't get that darn spinal tap. It can be brutal for some and it would be so unfortunate if it caused you harm for no good reason. I'm opinionated. What else can I say? I do wish you the best, Kathy

[low dose naltrexone] Spinal Tap needed??

Thank you all for the info about the MRI's but now it raises a question.... Sometimes I feel like I must not have MS and that they are wrong because I have only had one attack and the used MRI to dx me.How can they do that if it is inconclusive?? If you have a spinal tap does it tell you for sure if you have or do not have MS?? Is it the only for sure test?? What do they look for in a tap?? and how painful is it and are you awake and what are the risks??Thanks to all who can answer!

[Guest guest]

This sounds so like having good 'chi' or something! Are you a closet mystic or something?!

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Kathy LintzenichSent: Wednesday, July 26, 2006 9:55 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Spinal Tap needed??

The spinal fluid is there for a very good reason and it also correlates with the seven energy centers of the body . When you have a spinal tap, it takes your body out of balance or homeostasis. When you have a good balance your energy flows freely and dis-ease cannot exist.

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

>

> There's always another opinion... I'm interpreting Kathy's attitude

as

> " you're better off not knowing " ; but if you're anything like me, I

was GLAD

> to have a label and a reason to explain all the strange things that

were

> happening to me. Knowing what I was fighting gave me the confidence

to fight

> it head-on with traditional medicines. I'm still fighting, taking

LDN now

> for the last year, with Copaxone that I've been on for the last 7

yrs

> without side effects (after 2 earlier yrs of bad reactions to

interferon).

>

> I also don't think you need to be a baby about getting a spinal

tap. If you

> trust your neuro, then I'd do everything he wants in order to help

him make

> a definitive diagnosis. Having a spinal tap isn't a pleasant

experience, but

> if you curl in a ball on your side and keep really still, there's

only a

> little pain. Believe me, I've had worse pains in my life - like

childbirth!

> And if you drink plenty of water afterwards and go home to bed,

you'll

> minimize the effects of the spinal tap 'headache', which can be

awful for

> the next 24 hrs, I hear.

>

> Good luck, whatever you decide...

> Cheers, Rae

>

--

I wanted to know what was wrong with me, too. At least gave me a

starting point to wage battle.

I've had two spinal taps, the first being tolerable and the second

knocking me flat on my back for five days with the worst headache in

my life. I wanted to die to relieve the misery. I'll never get

another.

Artie

[Guest guest]

It is not a definitive diagnosis. There are risks. It can create an exacerbation and prolonged headaches. There are many people who have had them with no ill effects but since it is not definitive, do you want to take the risk? Would you be doing anything differently if it were a definite diagnosis? It can sometimes be a positive thing not to know for sure. I'm not saying ignorance is bliss but the "label of ms" can affect you mentally which also affects you on a cellular level. Mind, body and spirit are all integrated. If you have done all your homework and ruled out everything but ms and seem to have a benign course of something that resembles ms, then.......... Why don't you just take LDN, eat well , supplement, exercise and do some form of meditation. Sometimes if something isn't presenting itself to you, it may be for your highest good. Live each day with a positive attitude and honor your entire being. Hopefully whatever it is will never progress with the LDN. I'm not being irrational. I'm being a realist. This is the best course of action you have with what we have available right now. Don't get that darn spinal tap. It can be brutal for some and it would be so unfortunate if it caused you harm for no good reason. I'm opinionated. What else can I say? I do wish you the best, Kathy

[low dose naltrexone] Spinal Tap needed??

Thank you all for the info about the MRI's but now it raises a question.... Sometimes I feel like I must not have MS and that they are wrong because I have only had one attack and the used MRI to dx me.How can they do that if it is inconclusive?? If you have a spinal tap does it tell you for sure if you have or do not have MS?? Is it the only for sure test?? What do they look for in a tap?? and how painful is it and are you awake and what are the risks??Thanks to all who can answer!

[Guest guest]

The spinal fluid is there for a very good reason and it also correlates with the seven energy centers of the body . When you have a spinal tap, it takes your body out of balance or homeostasis. When you have a good balance your energy flows freely and dis-ease cannot exist.

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

Hi -- this is in response to Aletha's post about her husband. I was recently diagnosed with Lyme disease. All the symptoms mentioned by Aletha are also in the Lyme symptom list. Dr. Bihari's office(naltrexone office) also treats people with Lyme. You usually get Lyme by being bitten by an infected tick. You can check the symptom list out at www.anapsid.org/cnd/diagnosis/mastersymptoms.html. Lyme can imitate many diseases, including MS, so I wanted to mention this possibility, to alert anyone who's got a mysterious set of symptoms they can't figure out. If you suspect this disease(also coinfections), you can get tested at good labs, like IgeneX in Palo Alto, CA(800-832-3200), MDL in NJ(877-269-0090) or NJ Labs in NJ(732-249-0148). If positive, you will need antibiotics, best monitored by a knowledgeable Lyme/coinfection doctor. -- Robin

[Guest guest]

hee hee that's funny Rae!! No, actually I'm pretty scientific in my way of thinking BUT I am also a massage therapist and strongly believe that Chinese medicine has alot of validity to it. I didn't mean to sound like a mystic. That is hysterical!!! I think I like it. It makes me more interesting. (just kidding) Take care, Kathy

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

Hi, I continue to refuse the spinal tap. I feel so strongly about it, I feel there must be a reason. I have learned, in my almost 70 years, to listen to my inner knowing. Everything I read here tells me there is no way to be sure I can get a definite dx anyway. I have had these symproms since 1985. It is obviously slowly progressive these 21 years. I am a 6 to 6.5 on the scale. How ridiculous is this that nobody is willing to tell me I have MS. I am going to do the Lyme test but I believe I have MS. It will be a relief to finally know, once the Lyme test is done. When you are dx, you at least have the comfort of the understanding of those around you. Without a dx, without any visible symptoms, only an inability to move normally, be strong normally, have normal energy etc. even myself, I sometimes wonder if I am just lazy and not performing up to par. This not knowing is hard. Eve

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

My husband never had a spinal tap done. He has had a few MRI's and they all show one lesion on the spine. He had classic symptoms of MS, with fatigue, bladder frequency, problems with alignment, problems with fine motor skills, depression (lack of feeling of well being), and numbness and tingling in different areas of his body. Once he started LDN he lost his fatigue the next day (1.75 years ago and has not returned), within a month bladder frequency was gone, he could align things and use tools and after he started DLP his depression was gone. He surfs, plays basket ball, tennis and works out at the gym again.

Tonight he informed us that he decided he does not have MS and never did. Hmmmm! Isn't it great to have a drug that works so well that my husband can become convinced that he does not have MS afterall. (I notice he still took his nightly dose of LDN).

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

Eve,

I feel like I must look thike the laziest person in the world!

-- Re: [low dose naltrexone] Spinal Tap needed??

Hi, I continue to refuse the spinal tap. I feel so strongly about it, I feel there must be a reason. I have learned, in my almost 70 years, to listen to my inner knowing. Everything I read here tells me there is no way to be sure I can get a definite dx anyway. I have had these symproms since 1985. It is obviously slowly progressive these 21 years. I am a 6 to 6.5 on the scale. How ridiculous is this that nobody is willing to tell me I have MS. I am going to do the Lyme test but I believe I have MS. It will be a relief to finally know, once the Lyme test is done. When you are dx, you at least have the comfort of the understanding of those around you. Without a dx, without any visible symptoms, only an inability to move normally, be strong normally, have normal energy etc. even myself, I sometimes wonder if I am just lazy and not performing up to par. This not knowing is hard. Eve

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

Hi , I hope you didn't read that I was calling anyone else lazy. Nobody knows better than I what a struggle and how much ambition it takes just to get through the daily necessities. This is my own inner voice telling my own self that. I don't go out much, and don't do so much with my family, and many people just don't understand why. They think I just don't want to. Can you imagine being seriously ill, with all the MS-type symptoms I have had for 21 years, progressively worsening, and being told over and over by doctors that I'd feel better if I lost weight, that I'd be strong if I exercised, etc. etc. etc. After a while, my own inner voice began doing the same thing, and it's another struggle to maintain self respect. And now, when I use my scooter which is the only way I can get out and about because of muscle weakness and imbalance and incoordination -- not excess weight, and not only arthritis, people who know me actually ask me why I am in the scooter, or why I use an arm crutch -- and my only answer is that I need to. I sometimes feel if I had a dx, people would understand. Even I would understand. I get really tired of trying to explain with no explanation. Please accept my apologies if I hurt your feelings in any way. I was venting a bit on a personal problem. Sorry. Eve

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

Eve, have you started LDN yet? Don't be afraid. It won't hurt you and you may benefit greatly. Best, Kathy

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

I've called my doctor and told her I want to start and I'm waiting for a call back to see if I need an appt. or not. Eve

Re: [low dose naltrexone] Spinal Tap needed??

I don't know if it is a conclusive test. Others will likely have info. or opinions about it. I can attest to the risks. It's a delicate operation drawing fluid from the bundle of nerves that is your spinal column. Risk of permanent nerve damage is legitimate. My wife has had 2 done. The first was many years ago when she was diagnosed with MS. The second was 2 years ago to check for encephalitis to explain the excruciating, perpetual headache. A spinal tap can cause an immense headache in itself, and in 's case it greatly amplified the headache she already had. The problem is the hole put in the spinal column by the original needle doesn't close and the slow leak of spinal fluid causes the headache. A blood patch is the fix. A small amount of blood is drawn and injected into the spinal column and it closes both needle holes. needed 3 blood patches, 4 spinal pokes total, each with its inherent dangers.dimas_jen wrote:>Thank you all for the info about the MRI's but now it raises a >question.... Sometimes I feel like I must not have MS and that they are >wrong because I have only had one attack and the used MRI to dx me.>How can they do that if it is inconclusive?? If you have a spinal tap >does it tell you for sure if you have or do not have MS?? Is it the >only for sure test?? What do they look for in a tap?? and how painful >is it and are you awake and what are the risks??>Thanks to all who can answer!>>>>>>> >

[Guest guest]

In response to the spinal tap topic;

What will the data be used for?? I just got back from my neuro, and

there is NOTHING we can do for the disease. So , I've been diagnosed,

did Rebif till my redblood cell count dropped. Did Copaxone till it

triggered an exacerbation. Even if the drugs work, they don't slow

the disease down that much. So what if you have MS. There's not

much, if any FDA approved treatments for it. If you do decide to have

the spinal tap done, make sure there is a decision tree / flow chart

that shows how the data will be used (what decisions will be made).

If you don't agree with the decisions that the data will be used for,

then the procedure is doubly stupid.

Hi, I continue to refuse the spinal tap. I feel so strongly about

it, I feel there must be a reason. I have learned, in my almost 70

years, to listen to my inner knowing. Everything I read here tells me

there is no way to be sure I can get a definite dx anyway. I have

had these symproms since 1985. It is obviously slowly progressive

these 21 years. I am a 6 to 6.5 on the scale. How ridiculous is

this that nobody is willing to tell me I have MS. I am going to do

the Lyme test but I believe I have MS. It will be a relief to finally

know, once the Lyme test is done. When you are dx, you at least have

the comfort of the understanding of those around you. Without a dx,

without any visible symptoms, only an inability to move normally, be

strong normally, have normal energy etc. even myself, I sometimes

wonder if I am just lazy and not performing up to par. This not

knowing is hard. Eve

>

[Guest guest]

Hi, thanks for the answer. What you say makes a lot of sense. And Good Question. What will the data be used for? I continue to refuse. Eve

[low dose naltrexone] Re: Spinal Tap needed??

In response to the spinal tap topic;What will the data be used for?? I just got back from my neuro, and there is NOTHING we can do for the disease. So , I've been diagnosed, did Rebif till my redblood cell count dropped. Did Copaxone till it triggered an exacerbation. Even if the drugs work, they don't slow the disease down that much. So what if you have MS. There's not much, if any FDA approved treatments for it. If you do decide to have the spinal tap done, make sure there is a decision tree / flow chart that shows how the data will be used (what decisions will be made). If you don't agree with the decisions that the data will be used for, then the procedure is doubly stupid.Hi, I continue to refuse the spinal tap. I feel so strongly about it, I feel there must be a reason. I have learned, in my almost 70 years, to listen to my inner knowing. Everything I read here tells me there is no way to be sure I can get a definite dx anyway. I have had these symproms since 1985. It is obviously slowly progressive these 21 years. I am a 6 to 6.5 on the scale. How ridiculous is this that nobody is willing to tell me I have MS. I am going to do the Lyme test but I believe I have MS. It will be a relief to finally know, once the Lyme test is done. When you are dx, you at least have the comfort of the understanding of those around you. Without a dx, without any visible symptoms, only an inability to move normally, be strong normally, have normal energy etc. even myself, I sometimes wonder if I am just lazy and not performing up to par. This not knowing is hard. Eve>