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?
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.
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.
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.
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 :)
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.
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.
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.
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
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 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.
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.
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.
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!!
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
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!
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
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 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 had a LP in Dec and I'd have no problem doing it again if my neuro wanted me to.
I don't have the burning sensation you get, at least not as severely as you.
Cog fog I get. I have memory problems, can't find words, forget my point....etc, etc. My wife often completes my sentences for me. I just look at her when I lose a word, she says the word, and i carry on talking like i said it. We get a chuckle out of it, you gotta keep a sense of humor.
This is my 3rd try to respond here, i don't know what I'm doing wrong, but I keep loosing my posts. I'm being real careful this time
I dread the lumbar puncture "thingy" too. I had one in the hospital about 7 years ago and it was not a pleasant experience. They did it like 3 times and I could've come off the table like the exorcist on them. Little did I know that Dr. had the worst rep in the area. lol As long as they know what they're doing I am sure it will be fine. The test and the way it's administered from what I understand has come a long way. If I could do mine beside of you, we could go it together. Just think, this could be the day your mystery ends! Isn't it worth a little discomfort to finally prove to them what you've suspected? It will be for me! You'll do fine and so will I.
The cog fog is quite common - but one thing I believe all of us would agree on is it gets worse when we have performance anxiety. The more we push and worry about retrieving words, the worse the problem becomes.
Stay in touch and let us know how the testing goes. It sounds like you are in good hands.
I really think I am ready for this. If it was not for this forum I think I would have a breakdown. You guys are amazing and I truly appreciate all the advice and the laughs.
I am ready to face this, whatever the results. If it is negative then I will demand more test. I am not crazy and I know what I feel.
You are correct about the cog fog, the more I try to get my words out, the more frustrated I get and then I sound like I am speaking in a different language or daffy duck,
Anyway, thank you everyone. I will let you guys know how things go and then the results.
I think I have everybody!
I just want to say thank you again for your post and notes.
For the first time in awhile I actually smiled all day and laughed, well except when I fell over last night trying to put an outfit on my dog. (yes I dress my dog). She gets cold.
I busted my head on the corner of my kitchen table, but my sweet Sadie girl looks so darn cute in her new outfit.
You guys have made me feel so much better. Better than Mr. Positive here at my work.
Anyway, thank you for the support. You guys are amazing!
Ok I had my LP today at 1:45 and it is now 11:16 and my back hurts so bad I want to cry. I have not had a headache at all.
I have taken two loratabs and nothing is stopping the pain. I am going to bed now to see if it helps.
Is this normal?
I have a photo shoot tomorrow and I do not think I will be able handle taking pictures.
Just wanted to ask if this has happened to anyone ele.
I am so sorry to hear that you are having pain. I didn't have a problem with my back, just headache. Try to get some rest and take in plenty of fluids and caffeine tomorrow. Maybe a call to an on-call nurse or Dr to see if there is something more they can do for the pain. Is there any way to reschedule the photo shoot?
Hi Cin - you should probably reschedule your photo shoot - It sounds like you need to stay quiet for a while. If the back pain continues be sure to call your doctor's answering service and ask to speak to whoever is on call this weekend.
I hope when you wake up Saturday morning, the pain is all gone. But please take it easy so you don't aggravate the back.
The back is not as bad as last night, but oh god the headache.
I went back to bed with a big cup of coffee, my sweet dog who will not leave my side and I rescheduled the photo shoot. They are pregnancy photos, she has a few more weeks to go, so I will do it next weekend. She has had a spinal tap and completely understands.
Ok I am laying back down to some easy listening 70's music (great idea MIke).
Love my 70's music.
My back was really bad the first night, not so bad the next, then o.k. after that. The headache lasted a week slowly getting better.I would sit up awhile a few days out then have to lay down. It does get better. If not do not hesitate to call the doctor.
More people have the headache than doctors let you know. They do not want to scare you to death before hand.
Good morning to everyone!
Please tell me this headache will go away.
I need to express my feelings regarding my results from the LP. I cannot think of a better place to do it but here where you will understand.
I am scared and I cannot decide if I am scared that it will come back positive or negative.
If it is negative, then what is wrong with me? My specialist said that if it came back negative he would just send me back for more MRI's of my brain and monitor them. Which means no treatment and I have to walk around with no feeling on my left side and now the right side is starting the same path.
If it is positive, then I have to accept and deal with my life ahead of me, but atleast I will have an answer.
Am I making sense?
Friday, the day of my LP was my birthday and it was the worse weekend/birthday I have ever had.
Quick question and then I will shut up, I have been shaking (hands and legs) all weekend. Is that normal?
So sorry you are going through these tests and all the emotions that they stir up. This is such a crappy feeling which I understand all too well...
I had my first MRI on my birthday two days after my my first neurologist appointment in September. It was abnormal and pointed to MS. My spinal tap came out negative.
It's hard to puzzle out the conflicted feelings generated by the diagnostic procedure.
A clear answer means a positive result and the diagnosis is made. A negative result is inconclusive and starts the journey into limbo land. A friend of mine asked me: "you don't want to have MS do you?" I wanted to scream at her but held back and answered "of course not." I just want an end to ambiguity whatever it that means.
It's hard to wrap your mind around it all. Once you get on this train it seems like you can't get off.
At this point in time awaiting my follow up MRI, I am just trying to give myself some slack. I am not one to accept disarray in my life. So I am working to accept these confusing emotions. It requires a certain kind of patience that I don't seem to have much of. I am doing little things to improve my health. It gives me a tiny sense of control. It can't hurt to work on diet and do exercises to increase flexibility MS dx or not.
I hope you get the answers you need and that you find good support in your life to help deal with the process.
As for your question about shaking hands and legs... I don't know what's normal anymore. In my own experience the stress of the last few months led to all sorts of oddities of sensation and twitches. Also so many things I have always just ignored over the years have turned out to be symptoms of MS. Now I am hyper aware of them.
I suggest that you keep track of your symptoms (I am using the tracker available on this site) and mention them to your neurologist at your next appointment. Unless of course something occurs which you think would merit a phone call.
About the headache, I hope your doc gave you instructions on when to call or where to go if it seems like you need the blood patch.
It is normal to fear the results. Either you went through the test it came out negative and you are back at square one or it is positive and other tests have to be performed to rule out other illnesses and then a possible diagnosis of MS. The diagnosis is mixed first it is good because you know what is wrong. It was bad in my case because MS is crippling and incurable and in my case little can be done. A lot more watching and waiting to see what happens next has happened since my diagnosis almost a year ago.
Thank you for sharing your frustrations! My last lumbar puncture was negative, but I have lesions on my brain, numbness and tingling in my legs and bilateral arm pain with LOTS of fatigue and confusion. I get the results of my brain MRI tomorrow , so we can all share our most recent tests results. I just want a definitive diagnosis so I know how to prepare my body for the fight (whatever that fight may be :)
As soon as I get my results I will share them with yuou guys. You do the same Rachel.
All I want is an answer. I am starting to doubt myself and I do not like that.
I keep reading up on MS and I see that most people have attacks and then have good days and that sometimes they can go for a long time without a symptom. I rarely go a day without being numb and every night my legs and my left arm is fatigued.
I just do not understand. What happened to my good days?
Hello everyone, I am still waiting for the results from my LP, but no matter what it is, I know something is wrong.
I believe I have mentioned that I passed the evoked test, and I am not sure if this has anything to do with what happened today, but I had a horrible sharp pain in my left eye. It has been blurry all day, but when that happened it scared me bad.
Now, my eye is sore like somebody poked me in it.
Is this normal? what in the world is happening to me? If I passed the evoked test on my eyes then why is this happening?
More questions, sorry everybody.
Great! He told me 10 days and when I talked to him on Thursday he said he will have them back either Friday or Monday. Guess not!
I am so freaking dizzy today that I ran into the bathroom wall hard and then fell off the toilet. I know nice huh?
It has been 12 days now and I have heard nothing. I called and left a message yesterday and never received a call back.
What if they come back negative? Do I have to live with this numbness, fatigue and aching legs for the rest of my life? My right leg is going numb now. I noticed the inside of my right thigh was numb this morning. Its all been on the left side. I can't lose feeling in my right arm.
I am not sure if I asked you or not but what was your results?
The ladies in my department are all over my butt to call the doctor again today and demand the results or for them to atleast tell me they are not back yet.
I hate doing that. He is a good doctor and I do not want to make him mad.
Well I got my results back and it was normal. He said that he wants to do another MRI of my brain and neck ( the neck has never been done). He said that if I have more lesions or if the one I have has gotten larger than he will diagnose me with MS.
If they have not, he is sending me to another doctor that specializes only in MS. He promised he would get this figured out.
Of course I went to the bathroom and sat in the corner and cried, ok I sobbed.
I cried because I wanted an answer, not because I want something wrong with me. I should be celebrating that my spinal fluid is normal.
To make the ending of my day more special, I hit something on the way home and ripped of my front end and the wheel well. Oh what a day!
My boss just called and told me to take tomorrow off for a mental day To relax and get a pedicure and a manicure.
Thank you for your support.
This will actually be my third mri on my brain. The second one is where they discovered my lesion had grown.
Ren, I am not sure yet who he will send me to. He said that the guy he sending me to only deals with MS.
I was told I would get a letter in the mail regarding my next mri. I wonder why he wants one on my neck now. I have always had neck problems, but I cannot imagine it causing lesions on my brain and my face to go numb.
I am freaking the heck out because the numbness has now moved up to the inside of my right thigh.
I can't stop crying, is this normal? I am so depressed and I want to give up.
I am so lucky to have you guys for support but my friends are so supportive and begging me not to give up. Its so hard not to say to hell with it all.
I wonder if he thinks I have something wrong with my neck Anyway, who knows.
Thanks for letting me vent. I trying to get over my depression. I haven't cried in about 5 hours.
Nobody understands why I am crying. My boss told me I should be celebrating because my test came back normal. People who are not in limbo just do not understand.
I hope you had a great day.
Are you ready for some snow?
Ok guys I am know I am annoying as heck, but I have to ask a question and see if you have experienced this before.
My legs are aching really bad, they normally ache, but today it is horrible and I keep getting electric like shocks in my feet and legs, plus my legs are having bad spasms.
My legs also feel so hot.
What in the world is going on?
I am not stressed today, I have decided to be as positive as I possibly can. So I cannot blame this on stress.
Someone please tell me what is going on!!!
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