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My neurologist referred me to an Opthalmologist. Unfortunately the appointment was two days after my neurologist one.

First, the neurologist said that there are two lesions in my brain, but none found in my cervical spine. He says I present for MS but sometimes the body doesn't cooperate with medicine and show answers right away. I am very scared of the LP. It was funny, in trying to reassure me, he said it is no different than having an epidural when I had my children and I told him I had them naturally because I didn't want any needles in my spine ;) So, he told me to consider the LP and scheduled me for a six month follow up.

Two days later I saw the Opthalmologist. She and her staff were wonderful. I was there for four and a half hours. Findings are refractive diplopia and convergence insufficiency X(T); DDx MG, MS. She wants my neurologist to fax her diagnostic results of his testing and to evaluate me for something (that part was at the bottom and cut off on my copy of the report).

Right now I just don't know what to do. The Opthalmologist prescribed glasses so I will get them. Just unclear as to what the rest means. If I am going to do the LP I want to do it before the new insurance year starts because my deductible starts over and it is increasing.

Any thoughts, similar experiences, and comments are very much appreciated.

Thank you so much for taking the time to read.

Hugs to you all,
Minnie :)

[SarahL2491]

I am terrified of needles and I didn't even know my LP was done until they put the bandage on and applied pressure, it was so simple.  Many don't use the LP any more as its no longer the gold standard.  I did have it and it came back negative even tho I probably have about 9-10 lesions now, not counting the ones that disappear.

If you went thru natural childbirth, the LP will be a cake walk!  Just drink lots of fluids and caffeine afterwards.

[LilMinnie]

Thank you very much! I feel like such a wimp. He told me they use x-ray to make sure of the correct needle placement. I suppose I will probably go ahead and do it. Not that anyone wants to, but I am like you, I just hate needles, and now it seems my life is full of them. :( Just was hopeful that if it is MS I wouldn't need an LP. Then, if it is negative it will just throw a big monkey wrench into it all.

The whole vision thing scares me too. My vision used to be excellent. I never needed glasses and then out of nowhere, bam!

Thank you so much again for reading and writing back!

Hugs,
Minnie :)

[tina21067]

Minnie,

I have had 3 spinal taps over the last 5 years and they were nothing.  I had the same guy do 2 out of the 3 and actually, the novacaine needle hurt a little and then nothing.  He was done before I even realized he inserted the actual LP needle.

I did make sure I went home and laid flat for the rest of the day, but I have had no problem with any of them.  Actually, the 2nd one I had was done in NJ and we drove home right after to CT.  Don't fret, I don't think you will have a problem.

[Michelep74]

I'm terrified of the LP too but know I need to do it. It's scheduled in 2 weeks. I had 3 csection babies and do not like the idea of a needle in my spine but know I need answers. If I don't do it, I'll regret the unknown especially since I have been miserable with all of these symptoms for 2 months. My MRI showed no lesions and my eye apt showed no optic nerve issues. Best of luck to u

[LilMinnie]

Thank you all very much. I guess I'll go ahead and have it done. Perhaps that along with my vision change and test results I will be closer to some sort of diagnosis.

If I am understanding the Opthalmologist report correctly, she is looking at Myasthenia Gravis and MS as differential diagnoses. I realize that just means these are possibilities, but the LP could help them narrow it down.

Thanks again for reading and writing back and I hope you have a relaxing rest of the day,
Minnie :)

[kwarendorf]

Hi Minnie-

It sounds like you have a good Doc team working for you. Both your neurologist and opthamologist are heading in the same direction. This is a good thing!

While you are in the diagnostic phase, more information is better than less. I think you are making the right choice about having the LP done. My LP was a breeze :-)

Kyle

[LilMinnie]

Thank you, Kyle.  I am feeling a little better about it now.  I am hoping that perhaps I can schedule it for a Friday and have a whole weekend to recuperate.  Did you LP help confirm a diagnosis?  My neurologist told me that about 20% of people who have MS don't have positive O bands.  I have a feeling that I am going to be the exception rather than the rule but who knows!

I saw on another thread that your vision issues are more muscle-related and that you haven't had any ON problems.  My optic nerve appears to be healthy, too, and the Opthalmologist (I really need to learn to spell that correctly ;) ) is thinking apparently that my vision problems are muscle-related based on what I can decipher from the report.  It is written in "doctorese" and a lot is hard to figure out!

Thank you again for reading and replying!
Hugs,
Minnie :)

[kwarendorf]

My LP results showed > 5 O-bands in the CSF but not in the serum. This was the icing on the diagnostic cake.

I was lucky on my diagnostic journey. My PCP told me I needed to see a neuro. The first neuro told me she was 85% certain I had MS and that I needed to see an MS specialist. The MS specialist was a nightmare, but did the LP and confirmed the diagnosis. My current MS specialist is amazing!

It was about 2 months from first PCP visit to confirmed diagnosis. Good doctors are out there, you just have to look for them :-)

Kyle

[sllowe]

Lilminnie,
HI there. Your fears are understandable. One on hand, if O-bands in csf, and not serum, provides the doc more evidence. If none, your in the same holding pattern.

Either way, LPs are considered invasive, especially where comparisons to imaging, or bloodwork it concerned. It is a personal decision for sure.

You could ask the doctor what is hoped to be learned from results. Maybe the response will help you with the decision.

Wishing you well with your decision. If you go through with it, the Friday thought is a good one. Plan on doing nothing even if you feel well. Leaks can and do happen, and everyone should know what to do to prevent them even though not all are preventable.

So, no stairs, no lifting, lay, lay and hydrate for 24-48 hours. That's my best advice though I was not given that advise personally, it's just my opinion based on my leak experience.

[LilMinnie]

Grrr, didn't even think about stairs.  Our only full bathroom is up there, but come to think of it I wouldn't likely be showering or bathing anyway.  Will definitely follow whatever the doctor's orders are, and then some.  It still scares me, and I have read of people having them done several times :0  Once had better be enough is all I can say.

Thanks again so much for all of your reading and feedback.  You are awesome!

[grandmalaurie59]

Since we are a lot alike, I thought maybe I should let you learn from my mistake!.... 20 yrs ago when I had similar symptoms, I had a LP. Wasn't fun and not looking forward to it again.... You NEED to LAY down for as long as they tell you...Of course, I didn't... because I am Superhuman you know!  Well..not only did I get the HORRIFIC headache...but I ended up having to stay down for 2 extra days because my spinal fluid was leaking out into my body! Trust me I AM going to stay down this time!! :)

Just some loving advice ;)

Laurie

[LilMinnie]

Believe me, I will take the advice!  I am very nervous about that.  You know I must be if I'd rather have two children via natural childbirth than have an epidural!!  I may even take the following Monday off from work.  Can't hurt to pamper myself an extra day ;)

Hugs,
Minnie  :)

[grandmalaurie59]

Good! I am happy now :)

Laurie :)

[carrie235]

LilMinnie:

I had an LP and other than a little itty bitty back pain afterwards for a few hours, I was fine!!!!  No headaches, nothing....  I did drink a ton of water though, but it was easy breazy!!!

Go into it expecting no problems with a positive mindset and hopefully everything will be just that!

Good Luck!

[Sim514]

Hi LilMinnie, I was also very afraid of the spinal tap, but the experience was not bad. I had mine done on a friday. Just a little pinch and pressure.  In spite of following all the guidelines though  I had a horrific reaction a couple hours after I got up on Sat morning. I tried to stick it out, and received a prescriptions that morn through the radiology dept,  but I ended up in ER.  BEST thing I did. They ended up doing whats called a blood patch, where they take your own blood and use it to patch the leak.  Within 15 minutes, you feel better. It was a amazing. I was told that only about 2% of the people have a severe reaction, and that I should go play the lottery-not so funny. But, you might want to put this info in your back pocket just in case.