EVP and Spinal Tap

[hurley]

Hi Everyone

Yesterday I went to my new neuro (2nd appt) who ran the EVP's. The optic test was negative and the test on the extremeties was borderline which seems to have him concerned. I think this indicates some sort of demylenating process but it is possible something else is going on.

He is a MS expert but appears interested enough in my case to follow up and find some answers. YAY - - finally a doctor willing to follow thru. He is thinking CNS lupus or CNS vasculitis. He is going to do a spinal tap on 9/16. He gave the the option of having this done in the hospital where they use the x-ray machine or in his office. He does it by feel. I chose to go to him. At this point I wouldn't trust anyone else, machine or not.

He then will determine whether he needs additional tests such as an angiogram or MRI w/contrast, etc.

Thank gawd for my pain doc who referred me to my new internist who referred me to my new neuro!!! :lol:

Thanks for everyone's input, and esp Lily who gave me some good advice regarding CNS vasculitis.

Please think good thoughts for a dx (I guess I should say additional dx) at long last. These neuro sx's are shear he11.

Love and hugs. :love:

Julie

[raggedyann1]

Julie,

I am so glad that you are on the road to getting more answers finally. It is good to have confidence in the specialists we see.

Take care,
Karen

[zara]

Yay Julie! I'm glad you're finally getting somewhere. 'Bout Time! http://i21.photobucket.com/albums/b299/Erinyes_Star/Licensed%20Images/yahoo.gif

Zara :love:

[Lily]

Hi Hurley,

Well all I can say is :woohoo: sorry that may seem bizarre to those who havent been through this diagnostic minefield with CNS stuff but I'm sure you understand what I mean by it :flowers:

I'm so glad that he's doing all the right things and checking this out thoroughly. My EVP was normal but that really was just one of those things along the way to diagnosis.

Sending hugs for a speedy resolution to exactly what is going on with you. I agree this neuro stuff is NOT fun (((((((((Julie))))))

love
Lily

[hurley]

Thank you for your good wishes Karen, Lily and Zara (can always count on you for the very best smilies).

Also, I think I read on a post Lily made that at first her GP seemed good, but after a certain point he was worthless. That was my experience. I've "broken up" with a number of docs, but pushing for an answer will have been worth it if I can get the proper treatment for whatever is ravaging my body. So, Zara, don't give up and once again, don't be afraid to fire your doc if you're not happy with him/her or if you are treated badly.

Thanks ladies.

Julie

[jhmom]

Hiya Julie :overhere: I am so glad you are on your way to getting some straight answers, you have been through so much :hugbetter: !!

You will be in my thoughts and prayers on 9/16 :goodvibes: , please keep us updated on how things are going.

Take care :flowers:

[jude mack]

Hi Julie
This is great, I am happy you are getting somewhere with all this. And Good luck
on 9/16. Take care as always. Jude :wave:

[yellowrose]

My prayers and thoughts will be with you. I have had a terrible time since my spinal tap 2 months ago. Some say what happened to me neurologically wasn't related to the LP but they did not let me stay lying for any time which made all the spinal fluid leave my brain area. This has caused some brain trauma and I have not been able to work, drive or stay by myself since then.

Please make sure that you stay laying down after the tap and for safety sakes ask your dr if he does immediate blood patches after the test. Mine didn't (not done by my neuro but at a hosp) and they don't. Had spinal fluid requiring two patches. A neuro that I went to for one of the patches says he does one after every LP just in case.

Don't want to be so blunt but I wish I had known this before my tap.

Keeping my fingers crossed, sounds like your neuro is on top of things :flowers:

[hurley]

Thank you for the kind replies Stacie, Jude and Yellowrose.

Yellowrose, I have been following your posts about your spinal tap. I know you have had a terrible time with it and I appreciate your advice. I'll be sure to stay horizontal. Of course, in your case, they will not admit to any wrong doing in fear of a law suit. That you were put in a wheel chair for blood tests after your LP seems to me like negligence pure and simple. Please keep us updated on your progress and I'll post about my LP results when they come in.

Thanks for all your support. It means so much.

Hugs and love.

Julie

[yellowrose]

Thanks so much. I was checking back to see how you were doing. Will keep an eye out for you. I'm sure you will be fine.

I think that since mine was done by a teaching hospital (Vanderbilt) that it was done by a doctor in training, I know it wasn't done by my neurologist as I thought it would be. The fact that they got me up immediately and left me was probably the kicker for me.

Thoughts and prayers

[flowergarden]

Julie, I find the neurological problems the hardest to deal with. Others might find differently, but this is me. It was so hard to know something was going wrong in my head but the docs didn't believe me. Without my brain, I'm not ME. It's scary not to recognize myself mentally. It's scary to have so many weird things happening to my brain, too. I hate it when my computer starts reading my mind (for those of you who remember that one)

I SO hope you get some answers. It's about time. Then I'm going to be hoping and praying for some good treatment for you. :flowers: :flowers: :flowers:

[hurley]

Thank you Yellowrose. I'll let you know how it goes.

I know what you mean Sue. I know you both have had a rough time and I haven't been here much lately, but I'm checking up on All of you when I can.

I hope to be back more often in the near future.

Lovesxoxo

Julie