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Spinal Tap Phobia
I saw my MS Specialist yesterday and he has ordered yet another test. A spinal Tap. I am scared of those.
I understand and appreciate that he wants to me make sure it is MS before he starts treating me, but what else could it be? What else mimics MS?
Because my EMG was normal and the visual part was normal I believe he is starting to doubt me. I wouldn't make up these symptoms. I do not want them. They are ruining my life.
I apologize because I frustrated and confused.
What if there are no antibodies in the fluid, does that mean I am crazy and none of these symptoms are real?
Does the lesion on my brain mean something else?
Sorry guys, I do not know what to think anymore.
Cin
I understand and appreciate that he wants to me make sure it is MS before he starts treating me, but what else could it be? What else mimics MS?
Because my EMG was normal and the visual part was normal I believe he is starting to doubt me. I wouldn't make up these symptoms. I do not want them. They are ruining my life.
I apologize because I frustrated and confused.
What if there are no antibodies in the fluid, does that mean I am crazy and none of these symptoms are real?
Does the lesion on my brain mean something else?
Sorry guys, I do not know what to think anymore.
Cin
Being afraid of an LP is normal. The fear is way worst than the test. In my case they gave me an IV sedation. I do not remember a thing. I really blew it up in my mind. It is hard to do but not thinking about it is the best thing you can do for yourself.
It is not a fun thing but it was not the worst either. The fear factor is way over blown.
Alex
It is not a fun thing but it was not the worst either. The fear factor is way over blown.
Alex
Cin, I can tell you're freaking out, and that just makes things 10 times worse. You really need to calm yourself.
LPs cannot confirm MS, but a positive result, along with other factors, makes MS more likely. As Alex says, the fear factor is overblown. Most people have no adverse reaction at all. I didn't. It's possible to get a bad headache, but there are treatments for that as well.
The reason we go through all these tests is that MS has a great many mimics, which you can read about online or here in our Health Pages. If all of these are eliminated, we are left with MS as a diagnosis. So it often takes a lot of time to get to the bottom of things.
Don't jump to the conclusion that you will be considered crazy if they don't find an explanation for your symptoms. A lot of us seem to be doubted, but ultimately things work out.
Just try to take one step at a time. You will do well. Get as much sleep as you can, eat well, and do your best to focus on other things too.
Hang in there.
ess
LPs cannot confirm MS, but a positive result, along with other factors, makes MS more likely. As Alex says, the fear factor is overblown. Most people have no adverse reaction at all. I didn't. It's possible to get a bad headache, but there are treatments for that as well.
The reason we go through all these tests is that MS has a great many mimics, which you can read about online or here in our Health Pages. If all of these are eliminated, we are left with MS as a diagnosis. So it often takes a lot of time to get to the bottom of things.
Don't jump to the conclusion that you will be considered crazy if they don't find an explanation for your symptoms. A lot of us seem to be doubted, but ultimately things work out.
Just try to take one step at a time. You will do well. Get as much sleep as you can, eat well, and do your best to focus on other things too.
Hang in there.
ess
I doubt you are crazy! I know it's frustrating to not know what's wrong and what's causing these crazy symptoms.
Has your doctor talked to you about what else could be going on? There a lots of things that mimic MS like Lyme Disease, Lupus, etc. Have you had tons of bloodwork to try to rule those out?
Lesions can be caused by some other disease or they could have been around for years and you just weren't aware of them. They could have been caused by an old injury. Was this your first MRI? Was it done with or without contrast?
A spinal tap will only help point either toward or away from MS. It's not a definite yes-or-no-you-have-or-don't-have MS. Doctors use it to either support an MS diagnosis or help rule it out.
I know it sounds scary but hospitals do them every day. Plenty of people have had them, myself included. You can ask to be sedated if you're really nervous, which it sounds like you are.
Don't doubt yourself. It's your body and you know what's normal and what isn't.
Has your doctor talked to you about what else could be going on? There a lots of things that mimic MS like Lyme Disease, Lupus, etc. Have you had tons of bloodwork to try to rule those out?
Lesions can be caused by some other disease or they could have been around for years and you just weren't aware of them. They could have been caused by an old injury. Was this your first MRI? Was it done with or without contrast?
A spinal tap will only help point either toward or away from MS. It's not a definite yes-or-no-you-have-or-don't-have MS. Doctors use it to either support an MS diagnosis or help rule it out.
I know it sounds scary but hospitals do them every day. Plenty of people have had them, myself included. You can ask to be sedated if you're really nervous, which it sounds like you are.
Don't doubt yourself. It's your body and you know what's normal and what isn't.
I had mine done back in Aug & was terrified too. I was really worried because I have a spinal fusion at L-3 to L-5, right where they have to stick...
Anyways, it really wasn't as bad as I thought it would be.
I have major anxiety all the time anyways, but specially when it comes to Drs, Hospitals, etc... I managed somehow to calm down enough to have it done without being sedated. How? IDK cause I was tripping when we first got there.
Good luck and hope all goes good and helps with some answers. Your definately not making it up! I think Drs that think/say that shouldn't even be Drs! After my 10 years in limbo I really think I am crazy and they drove me to it...
Sorry I'm not to good at commenting on stuff cause I'm right there with you in the confused & frustrated state... But take it easy and hope everything goes good :)
Live, Laugh, Love
Mel
Anyways, it really wasn't as bad as I thought it would be.
I have major anxiety all the time anyways, but specially when it comes to Drs, Hospitals, etc... I managed somehow to calm down enough to have it done without being sedated. How? IDK cause I was tripping when we first got there.
Good luck and hope all goes good and helps with some answers. Your definately not making it up! I think Drs that think/say that shouldn't even be Drs! After my 10 years in limbo I really think I am crazy and they drove me to it...
Sorry I'm not to good at commenting on stuff cause I'm right there with you in the confused & frustrated state... But take it easy and hope everything goes good :)
Live, Laugh, Love
Mel
I want to thank you all for responding. I am having a hard time making people who are questioning me understand why all my symptoms are coming on fast and strong lately. The only thing I can tell them is I have had the symptoms for years and never thought anything of them. Just thought I was getting old or having back issues until my face went numb and I fell really hard one day and hurt my back and had to go the emergency room.
My Neurologist did alot of blood work when I first went to see him and the only thing that came back was a vitamin D deficency. Which blew my mind because I love to be outside and in the sun.
Again thank you so very much, I do not feel as alone as I did.
Have a wonderful day,
Cindy
My Neurologist did alot of blood work when I first went to see him and the only thing that came back was a vitamin D deficency. Which blew my mind because I love to be outside and in the sun.
Again thank you so very much, I do not feel as alone as I did.
Have a wonderful day,
Cindy
Just looked up Lupus and Lyme's disease and I do not have any of those symptoms other than the fatigue.
I told my specialist yesterday that my left arm (which is the side of numbness) gets so heavy feeling and shakes if I try to use it. It is like I lifted weights or something and it was fatigued. He ask if I had pain in the arm, which I don't. The only pain I have is some days my legs ache so bad I want to cry. It reminds me of growing pains as a child but 100 times worse, but normally I have jello legs at the end of the day.
I am the human pinball at work, I constantly run into the walls or file cabinets.
One more thing and I promise to shut up, but as I look at the screen while typing this, I see little black dots. It does not happen alot, but it happens. Or it is flashes.
I swear I am falling apart.
Ok I will stop now.
Cindy
I told my specialist yesterday that my left arm (which is the side of numbness) gets so heavy feeling and shakes if I try to use it. It is like I lifted weights or something and it was fatigued. He ask if I had pain in the arm, which I don't. The only pain I have is some days my legs ache so bad I want to cry. It reminds me of growing pains as a child but 100 times worse, but normally I have jello legs at the end of the day.
I am the human pinball at work, I constantly run into the walls or file cabinets.
One more thing and I promise to shut up, but as I look at the screen while typing this, I see little black dots. It does not happen alot, but it happens. Or it is flashes.
I swear I am falling apart.
Ok I will stop now.
Cindy
Your symptoms could very well be worse lately. You could be having a relapse or you could be under stress which makes your symptoms worse. Or it could be now that you're working toward a diagnosis, little things you used to brush off are now finally making sense! I see weird things in my field of vision too from time to time. It really messes with you, doesn't it?? I seem to have trouble clearing door frames also.
Ahhh The door frames, my worst enemy. I swear people that do not know of my condition must think I am total klutz or have a really bad drinking problem.
I always make a joke everytime I hit one about people need to stop moving the door frames. I handle everything with a joke. It makes me feel much better.
Cin
I always make a joke everytime I hit one about people need to stop moving the door frames. I handle everything with a joke. It makes me feel much better.
Cin
Hey I just got my LP last week and honeslty going to the dentist is worse then that! However i thought i was in the clear cause i did not get a headache after the procedure but a day later i did i just loaded myself up on those red bull shots figured that would have the most caffiene and it went away in a couple of days! My back did hurt after the procedure but i kinda expected that one.
And there is alot of diseases that can mmic MS the ones i know of hand is Lupus and Lyme but there are many more.
Good Luck on you Spinal Tap and Its a good thing he wants to do all the tests possibly and make sure he dont miss anything so he gets it right! Hope all goes well! With Love, Erin
And there is alot of diseases that can mmic MS the ones i know of hand is Lupus and Lyme but there are many more.
Good Luck on you Spinal Tap and Its a good thing he wants to do all the tests possibly and make sure he dont miss anything so he gets it right! Hope all goes well! With Love, Erin
Hey guys,
I hope everyone is good.
Today I had a man come to me at work who has MS. His goal was to make me feel better about what I am going through. Instead he scared the living crap out of me and when he left my desk I was in tears.
He told me that I should decline the Spinal tap because it was old school and not necessary. Also, I should change doctors. Oh and the medicine will make me fat.
I just thought I would share that lovely story with you guys.
I hope everyone is good.
Today I had a man come to me at work who has MS. His goal was to make me feel better about what I am going through. Instead he scared the living crap out of me and when he left my desk I was in tears.
He told me that I should decline the Spinal tap because it was old school and not necessary. Also, I should change doctors. Oh and the medicine will make me fat.
I just thought I would share that lovely story with you guys.
Hi-
I spotted your entry and wanted to share my experience of the spinal tap with you. I too was scared out of my wits when my MS specialist suggested it. I had heard that it leaves you with a horrible headache.
My previous neurologist had scared me into not getting it done. In my case, the test showed what it needed to. I did not have the aweful headache they warned of.
As far as the meds, I am on Copaxone since Aug 2009 and no weight gain for me. I don't even think that is a side effect.
When you described how you are a "human pinball", that sounds just like me. That is the biggest problem for me. I make jokes saying I should move to Vegas, then I would "blend" in with all the other drunk people. I find that its much easier to make a joke about it. If I don't laugh, I will cry.
Please try to be calm about this test. You will find that it wasn't as bad as our imagination led us to believe. We are all here for you and most of us have gone thru the same things.
Don't let someone else's MS dictate what yours might be. I have tried to compare mine with others and I really can't. Every case is different.
Take care and be well !
I spotted your entry and wanted to share my experience of the spinal tap with you. I too was scared out of my wits when my MS specialist suggested it. I had heard that it leaves you with a horrible headache.
My previous neurologist had scared me into not getting it done. In my case, the test showed what it needed to. I did not have the aweful headache they warned of.
As far as the meds, I am on Copaxone since Aug 2009 and no weight gain for me. I don't even think that is a side effect.
When you described how you are a "human pinball", that sounds just like me. That is the biggest problem for me. I make jokes saying I should move to Vegas, then I would "blend" in with all the other drunk people. I find that its much easier to make a joke about it. If I don't laugh, I will cry.
Please try to be calm about this test. You will find that it wasn't as bad as our imagination led us to believe. We are all here for you and most of us have gone thru the same things.
Don't let someone else's MS dictate what yours might be. I have tried to compare mine with others and I really can't. Every case is different.
Take care and be well !
In my opinion Pinal Taps are not useless unlike what that guy told you... If they are using the new technology they are 96 percent accurate to detect MS! Thats in the health pages for this forum if ya wanna read it! Thats why i went through with it 96 percent is a dang good percentage!
I'm not so sure where that 96% figure comes from - maybe you can give us the sourceHP on that and we can look into that statistic. I do think that the LP is a 50/50 proposition. it may support your diagnosis but if its negative, that doesn't mean anything either. There LP is no longer done by all neuros, but most of them still rely on this test.
As for this *helpful* person at work - its usually someone other than an MS patient who has the retched tales of an aunt or friend or someone else they know that had MS. It sounds to me like this man could use a big dose of counseling to get his emotional issues in check.
I hope that if he wants to help you some more, you find a way to kindly decline further talks. You don't need that and he's obviously not the one to help you find an objective look. As for the meds making you fat - did he say which one? That may be his excuse for his own physical condition.
be well,
Lulu
As for this *helpful* person at work - its usually someone other than an MS patient who has the retched tales of an aunt or friend or someone else they know that had MS. It sounds to me like this man could use a big dose of counseling to get his emotional issues in check.
I hope that if he wants to help you some more, you find a way to kindly decline further talks. You don't need that and he's obviously not the one to help you find an objective look. As for the meds making you fat - did he say which one? That may be his excuse for his own physical condition.
be well,
Lulu
It was in the health pages? and googled it before i got mine and said the same thing. ONLY if they use the new technology that only came out 2 ta 3 yrs ago ( health pages say). But it still dont really mean much if it is negtive they can still diagnose you! I was before my LP! Maybe i mis read it heres one of the webites i found it on tho! And like before even if it is positive there alot of other things it could be also The main thing i got out of it is people diagnosed with definate MS come up 96 percent positive ... that website explains it all clearer! it was last updated in 2008! http:// www.mult-sclerosis.org / diagnosingms. html
I'm sorry that man felt the need to try to scare you. What he did is just horrible. He should be setting an example for others with MS, not making them cry!
Please don't take any stock in what he had to say. My life hasn't changed that drastically since being diagnosed. Don't let him scare you. There are plenty of us here who can be honest and realistic with you and you don't need people like him around making you upset.
Please don't take any stock in what he had to say. My life hasn't changed that drastically since being diagnosed. Don't let him scare you. There are plenty of us here who can be honest and realistic with you and you don't need people like him around making you upset.
Thanks for your replies. Yes that man did not give me the warm and fuzzy feeling I think he was trying to accomplish. He sent me an e-mail and told me I ever need anything or wanted to talk to please let him know. Hmmm, I am all good!
It was suggested to me to google "mimics MS". Well I have done that until I think I have read every page on the internet.
There are many and I have looked at them all, but none are my symproms.
Here is my fear, what if my Spinal Tap comes back negative? I am not sure how I will feel. I am not say I want this to be MS, but what I do want is an answer and to feel better. I told my specialist my good days are getting few and far between.
Ok, I have two questions and then I shut up...
1. Does anyone have a burning sensation in their finger tips on the side of the body that is effected? It feels like I have burned my fingers.
2. Can this effect your memory or like when I am talking to someone I lose the words that I am trying to say. My husband is so patient with me when we are talking because I struggle sometimes with a simple conversation.
Ok I am done...for now!
Thank you so much for being here. I do not feel alone anymore!!
Cin
It was suggested to me to google "mimics MS". Well I have done that until I think I have read every page on the internet.
There are many and I have looked at them all, but none are my symproms.
Here is my fear, what if my Spinal Tap comes back negative? I am not sure how I will feel. I am not say I want this to be MS, but what I do want is an answer and to feel better. I told my specialist my good days are getting few and far between.
Ok, I have two questions and then I shut up...
1. Does anyone have a burning sensation in their finger tips on the side of the body that is effected? It feels like I have burned my fingers.
2. Can this effect your memory or like when I am talking to someone I lose the words that I am trying to say. My husband is so patient with me when we are talking because I struggle sometimes with a simple conversation.
Ok I am done...for now!
Thank you so much for being here. I do not feel alone anymore!!
Cin
I don't have burning in my fingertips but my feet burn. As for losing words...what did you...uhm sorry it's gone. lol Yeah I get that ALL THE TIME! I'm 37 now but when I was 10 years old I tested reading and comprehending 1000 WPM. Now I'm lucky if I can make it through a conversation without stumbling with my vocabulary. My poor husband has to finish my thoughts for me. I make so many mistakes when I type if it wasn't for spell check you couldn't read this comment. lol
Best wishes, Mary
Best wishes, Mary
Your so funny, that is exactly what I do and my husband finishes my sentences as well.
I guess I should tell the Specialist about my fingertips and my inablility to carry on a conversation.
Thank you for your reply.
I feel so much better everytime I get one knowing that I am not alone.
Cindy
I guess I should tell the Specialist about my fingertips and my inablility to carry on a conversation.
Thank you for your reply.
I feel so much better everytime I get one knowing that I am not alone.
Cindy
Hi cin68,
I had my first LP on Jan 13th. I had been putting off as long as I possibly could because I was scared of it.I had heard so many horror stories. But It is the last step for me in getting a diagnosis.
I can honestly tell you that it was not at all as bad as I had expected. I did have mine done in the hospital under Floroscope. I really recommend having it done that way. It is a Xray that enables the radiologist to see exactly where the needle needs to go.That way it is just one poke and your done. I did not actually get a true spinal head but I did have some pressure. So my neuro told me to just relax and lay down as much as possible for a few days. But I unfortunatly got the flu immediatly after the proceedure. I had not been feelin that hot a few days prior to it and ended up with the flu..Lucky me. If it would not have been for the flu the LP would have been a breeze.
I have burning on my face,mouth,tongue/neck and shoulders.But it is mostly confined to my right side.I also have cognitive issues.I have brain lesions and a plethora of MS like symptoms.
Please Take Care, Theresa
I had my first LP on Jan 13th. I had been putting off as long as I possibly could because I was scared of it.I had heard so many horror stories. But It is the last step for me in getting a diagnosis.
I can honestly tell you that it was not at all as bad as I had expected. I did have mine done in the hospital under Floroscope. I really recommend having it done that way. It is a Xray that enables the radiologist to see exactly where the needle needs to go.That way it is just one poke and your done. I did not actually get a true spinal head but I did have some pressure. So my neuro told me to just relax and lay down as much as possible for a few days. But I unfortunatly got the flu immediatly after the proceedure. I had not been feelin that hot a few days prior to it and ended up with the flu..Lucky me. If it would not have been for the flu the LP would have been a breeze.
I have burning on my face,mouth,tongue/neck and shoulders.But it is mostly confined to my right side.I also have cognitive issues.I have brain lesions and a plethora of MS like symptoms.
Please Take Care, Theresa
My specialist never mentioned anything about a Floroscope. I will be at the hospital because I go to Emory in Atlanta. He said he is going to do it in one of the examining rooms.
Ok now I am freaking out, maybe I should give him a call.
By Friday I am going to be a loon worrying about this. Thank goodness for Klonapin!
Cindy
Ok now I am freaking out, maybe I should give him a call.
By Friday I am going to be a loon worrying about this. Thank goodness for Klonapin!
Cindy
My neuro is an MS specialists and she and the other neuros in the practice do not do them at all in the office.She said doing it with the Floroscope is just easier for everyone involved.It was actually kind of cool because I could see the needle in my spine....Sorry I'm weird I guess..lol
I know alot of folks that have had it done in the doctors office and had no problems...
But it might not hurt to call your neuro and ask about it. Sometimes insurance will not cover it.But mine did.
Take Care, Theresa
I know alot of folks that have had it done in the doctors office and had no problems...
But it might not hurt to call your neuro and ask about it. Sometimes insurance will not cover it.But mine did.
Take Care, Theresa
Mine was done in the MS center in an "operating room" type setting. It only took a few minutes and didn't hurt much. A little poke.
I can totally relate to the forgetfulness. I can be saying something and have to stop and go.."what was I saying?" My neuro asked me before diagnosos whether I had trouble remembering things.. I told him I felt like I was getting "dumber"..(which isn't even proper english..lol) I can't think of words.. Everything is called a "thingy"..thank goodness my kids can understand what it is I am talking about. Its like playing charades..
When I would get mad, I used to be able to talk really fast, like an auctioneer..my husband used to call it a "drive-by verbal attack". Now,my tongue gets tied up. Bad for my defense..lol
I remember actually being happy when I was dx..Then, reality set in. There are lots of emotions to go thru. I hope you get the answers you are looking for.
Take Care!! Kristi
I can totally relate to the forgetfulness. I can be saying something and have to stop and go.."what was I saying?" My neuro asked me before diagnosos whether I had trouble remembering things.. I told him I felt like I was getting "dumber"..(which isn't even proper english..lol) I can't think of words.. Everything is called a "thingy"..thank goodness my kids can understand what it is I am talking about. Its like playing charades..
When I would get mad, I used to be able to talk really fast, like an auctioneer..my husband used to call it a "drive-by verbal attack". Now,my tongue gets tied up. Bad for my defense..lol
I remember actually being happy when I was dx..Then, reality set in. There are lots of emotions to go thru. I hope you get the answers you are looking for.
Take Care!! Kristi
Hey Ladies!
I guess I need to call my insurance company too.
That is so funny about you calling everything a thingy, that is what I call everything.
I will be in the middle of a conversation and completely forget what I was talking about. Before all this MS stuff, the girls in the department would giggle at me, not being mean, but would say "hey look something shiny"
Now they don't do it so much, because now they know what is going on. I kind of miss it. I do not want to be treated with kid gloves.
I am an emotional rollercoaster, giggling one minute and then crying at the drop of a hat.
So lovely to be around.
I hope you guys have a wonderful day and thank you!
I guess I need to call my insurance company too.
That is so funny about you calling everything a thingy, that is what I call everything.
I will be in the middle of a conversation and completely forget what I was talking about. Before all this MS stuff, the girls in the department would giggle at me, not being mean, but would say "hey look something shiny"
Now they don't do it so much, because now they know what is going on. I kind of miss it. I do not want to be treated with kid gloves.
I am an emotional rollercoaster, giggling one minute and then crying at the drop of a hat.
So lovely to be around.
I hope you guys have a wonderful day and thank you!
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