RE: will the testing ever end?

[Guest guest]

They are also testing for lupus, lyme disease and many other antibody diseases with the spinal tap. I have a wonderful doctor do my spinal tap and it hurt but they found out using a smaller needle prevents the headaches and they also make you wait 2 hours instead of the 1 hr before release.

In 1980 when I had the sarcoid attack of my left lung they would always take arterial blood gases and those hurt so much more to me than the spinal tap. One time in particular they had to do it over again. That feels like they are cutting your arm off when they take blood out of your artery.

I am sorry you had such a horrible time with your spinal tap.

KatSee what's free at AOL.com.

[Guest guest]

I am so sorry that you had such a horrible time with your spinal tap.

40 years ago I had meningitis, my head hurt so bad from my elevated

spinal pressure that I begged them to do another tap to relieve the

presure which they did.

Hopefully if you to have another one it wount be as uncomfortable.

One of the reason they do them is to rule out MS. With MS the spinal

fluid contains oligiclonal anribodys. I may have not spelled that

correctly.

Wishing you better days.

Judy in PA

[Guest guest]

Yeah, I've had 4 LPs. First one took 2 tries, the 4th took 3 tries.

Not fun. Now they will only do them using X-ray to guide them. No more

guessing games. Insist on it next time if you want to be spared extra

pokes.

[Guest guest]

Jodi, I hope you don't take this wrong, but I think your neurologist is a bozo. Where do they get their information?!? Many sarc patients do run low-grade fevers due to the inflammation, but not everyone! I've never run fevers, unless I had a particular problem, like a cat bite.

Spinal taps aren't always so awful. Many in the group recommend that you insist on having it done under ultrasound or fluoroscopy to help guide the needle, and also to insist on being kept for 12 hrs. or overnight to avoid the spinal headache. I've only had one spinal tap, which my neuro did in the office without any problems. I went straight home to rest, but got called in to work a few hours later (I was a nurse-midwife & didn't have someone cover for me), so ended up with a headache. I'd had a spinal headache before, from a spinal anesthetic, which was treated after 3 days with a blood patch. This headache resolved by the second day with just oral fluids, caffiene & resting as much as I could. My advice regarding spinal taps (LP's) is to get info on the doctor's experience (mine had been in practice for over 10 years & I knew him from the hospital, so I had faith in his ability to do the tap), as well as your own body & expectations (I knew my spine was easy to tap, from 2 previous spinals for surgery, and I try to avoid being in the hospital if I can help it). If you are at a teaching hospital, ask about the doctor's experience (might be the first tap for him/her) & request a more experienced doctor or direct supervision if you are concerned. Due to cost constraints, ultrasound or overnight stay might not be feasible. Definitely go straight home & lie down for the next 12 hours, drinking plenty of fluids.

I'm sorry that you had such a lousy time of it. Hopefully, you'll never need another tap.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: will the testing ever end?Date: Tue, 03 Jul 2007 21:03:22 -0000

Hi Everyone! I haven't posted much but frequently check in. This group is so helpful. When I read the postings here I no longer feel alone. My neurologist is still not convinced I have NS but as he says, "you're really leaning toward it" He says he doesn't think it's NS because I don't have consistant fevers. He still wants to test me for everything else under the sun. I had a LP on Friday. That was the most horrible experience I think I have ever had. They couldn't get a sample at first and had to go in 4 or 5 times before my fluid would come out. It was so painful. They said I was the most difficult one they have done in a long time and they do 3-4 a day everyday. Leave it to me. I of course got the miserable spinal headache and just today have slight relief. I went to the Hospital Sunday and recieved fluids and pain meds for it. I wanted to cry except my head hurt too bad. I also had a CTA today to check if I have an aneurysm causing the double vision and headaches that I developed out of the blue almost 3 weeks ago. Then after a hopefully relaxing 4th I go in for a PET scan of my brain on the 5th. I have been having problems with getting lost on my way home from town and generally not knowing where I am going. That is a scary feeling. The last round of testing I had (20+ tubes of blood drawn etc.) resulted showing adrenal insufficiencies. The doc didn't explain this yet so I will be going back over that to see what it means. My ace was within normal. I sure hope we figure out what is going on soon. This is really frustrating to be getting worse but not know why. I was told one night by a doc in the ER that sometimes we are better off not knowing what causes our pain. Unbelevable. I am one that wants to know. Jodi

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