Spinal Tap Phobia

[cin68]

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

[cin68]

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!!!

[cin68]

Thank you Ren!

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?
Cin

[rendean]

Your friends are right, don't give up! Limbo is a cr  appy place to be but a lot of us have been there and understand. It took me 4 years to get my dx.

The cervical (neck) MRI  may give the neuro the 2nd lesion so you meet the criteria for separation in time and space for the dx according to the McDonald criteria.

As for the crying...depression is considered a relapse in some people and/or the presenting symptom. Below is a recent link regarding this same subject:

http://www.medhelp.org/posts/Multiple-Sclerosis/Deression-in-MS/show/652883

Take a deep breath and try to relax. Like your neuro said, stress only exacerbates the symptoms. We're all here for support. Feel free to vent anytime!

Hugs to you,
Ren

[cin68]

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.

Ok I am done, I can't see from the tears.
Cin

[LoveMyBostons]

It sounds like your boss is very understanding. I know it ***** right now, but you have to believe that this testing will all be over soon and your life will settle back down to "normal"....

At least you will have 2 MRI's now so they can be compared.

I hope you get some answers soon! Enjoy your "me" day :)

[Mand125]

I'm sorry you are having to go through this limbo, I was diagnosed early on and never had to go through what you are, however I have a friend in a very similar situation to you.

As Ren says, hang in there, it is difficult I know but make the most of your day off and try to enjoy it.

Please stick around here with us.

Mandx

[rendean]

Sorry the results were not what you were expecting but I had normal LP results as well and still got a diagnosis.

Curious as to who he would send you to as he advertises himself as a MS specialist and this is why my local neuro sent me to him.

Hang in there! We're all here for support anytime you need it. When is the MRI scheduled for?

I'm glad you have tomorrow off. It will be nice to pamper yourself. Enjoy YOUR day tomorrow and try to relax and enjoy the pampering.

Hugs,
Ren

[cin68]

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.
cin

[Mand125]

Me again!

With great respect to the ladies in your department, only you know what you are comfortable doing. They mean well but please don't feel bullied into making calls that you are not ready to make.

Of course your results are extremely important but if you don't feel ready to call him then don't

Good docs are a precious commodity.

Mandx

[cin68]

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.

Cin

[LoveMyBostons]

Arrgh don't you hate when they don't call back??

I don't recall what the results were, just that they supported an MS diagnosis.

You should not have to live with that c rap for the rest of your life. You deserve to know what is causing it and what treatments are available to you.

[cin68]

I told my husband that if it does I will give up, but that was during one of my pity parties.

I will not give up.  I know something is wrong.  It is not in my head (well technically it is), I have lesions on my brain.
It is not normal to feel the way I do.

Thank you for your support and I know that I have so much support on here.  It has really helped me.
Cin

[Mand125]

Hi Cin

Remember that if your LP comes back negative it does not mean there is nothing wrong. If this should happen please do not give up the fight, maybe take stock for a while then see where to go next.

Obviously this is such a difficult time, I completely understand that while you do not want MS you DO want answers.

I think you know that whatever happens you will get loads of support on this forum.

Mand

[cin68]

Thank you Boston,

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?
Cin

[LoveMyBostons]

I'm glad your head is better. I had my LP on 9/4 and knew the results on 9/14.

[cin68]

Today I had to do a presentation to the FAA and I bet they thought I was drunk.  I was swaying back and forth.  
It was almost funny.  I had to see the humor in it or I would cry.

Cin

[HVAC]

Cin.
  Take it easy. It took me a couple weeks to be back to normal.

Alex

[cin68]

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?

My head feels much better, no more tap headache.

Cin

[HVAC]

Mine took three weeks and then they did more blood work which took another three weeks. Hang in there,

Alex

[sllowe]

Hey Gal,

It takes weeks to get results, and even longer for the O-band report.

Head better ?

[cin68]

Still no test results from the spinal tap!  Are they trying to make me crazy?

Cin

[cin68]

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.
Cindy

[cin68]

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?

You guys take care and thank you!!!

[Rachel4393]

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 :)

Rachel