I got a new neurologist who ordered a ton of tests including a lumbar puncture. I have a lot of mixed feeling about it. I'm glad that I finally found someone who seems to "get it" but I don't want a lumbar puncture and I am sick of all these damn tests. I want to know what is causing my neuropathy but I am afraid to find out how messed up my neurology really is.

The one thing that I am really relieved about is that I think she will order a repeat MRI, and I think that I've needed one since my left side fell weaker than my right last year. I can't believe all those other dodo neurologists didn't order one.

I think she is ordering a skin punch biopsy, MRI, EMG/NCS/repetitive EMG, and a lumbar puncture. She even asked me if I have ever had a PET scan. Holly cow! A PET scan! I once had a doctor make fun of me by offering me a PET scan. He was just being a jerk though, he wasn't serious.

WOW!

Lots of tests! This can be a good thing.

I'm scared of lumbar puncture too--for what it's worth--but I'm no doctor to say if you need it or not.

Maybe ask to do all the other stuff first--read that--then save the test that bugs you for last?

Just a thought.

Tell her you're really scared--if you are. Who knows? Maybe she's human and will hear you?

BTW my hubby says, WOW! A doctor that really listens--no doubt a woman? <chuckles> Then he asks where you are and how this miracle doctor can be found!

Sunflower -
Glad it seems like someone is trying hard to get to the bottom of whatever is going on. I know any kind of test can be scary. No matter how many I go through, I still get all worked up. I'll be praying that all goes well, take lots of deep breaths and make sure you let the technicians know how you're feeling. Good luck!

Sunflower, that is a lot of testing! We can't get PET scans here - right now they are only used for experimental purposes for cancer patients. I would be a bit apprehensive about a lumbar puncture too. Why not have all the others first and then see if it is really necessasry.

I am having a nerve conduction test next month to see if I have small fibre sensory neuropathy - I know that it always doesn't show up in that test though. What are your symptoms. I have been having some pain, pins and needles and muscle twitching - not painful just daman annoying - the pins and needles sometimes feels itchy...???? They began around Feb. after having POTS for 14 plus years.

Donna

Sunflower,
I just had a lumbar puncture in June because my neurologist decided she wanted to test me for Multiple Sclerosis. I was REALLY nervous about the test and I found that the anticipation was worse than the actual procedure. It wasn't as bad as I thought it would be. The needle was really small and wasn't painful. The important part was remaining horizontal for the entire day after the procedure. In fact, I found that lying on the couch for a few days after the procedure worked well....to avoid a spinal headache.

So...my advice would be to do it if the doctor thinks it's necessary. I'd be happy to answer any questions about it if you need.

Sincerely,
Erin

I've actually had a lumbar puncture before, which is why I dread it. It's not the lumbar puncture itself, but the 10 day headache that follows that I am dreading. I have just started a new job and I don't even have vacation time yet or enough sick leave built up to cover that kind of absence. My supervisor is very reasonable but it really makes me uncomfortable to miss that much work.

I was thinking about how we all discussed how doctors often seem enthusiastic the first time you meet them, but the second time they act like they never want to look at your face again. I can't help but be worried that with all these tests she will be sick of me soon. Also, it seems like she is having organizational troubles at the office, which will make it worse.

bleh.

quote:

BTW my hubby says, WOW! A doctor that really listens--no doubt a woman? <chuckles> Then he asks where you are and how this miracle doctor can be found!

Yeah, they are hard to find all right. She is the 4th neurologist I have seen in this city. It is important to go to an academic research center and try to research the doctor on the web before hand. Also, make sure that you don't have a crappy capitated insurance policy.

The Cleveland Clinic has an "outlet" in Florida. You should seriously try there.

Hi SunFlower,

Well, hopefully she won't lose interest. Either way get copies of all the test results.

Isn't there a blood patch or something they use when you get those headaches? Do they let you lie still long enough afterwards? If you don't know the recommendations look them up and be sure she is on board. I thought it was a good idea to wait until the end to see if you really need it.

The thing I hate about tests (other than there seems to be no end in sight) is that the drs. act like they're conclusive, before and after. Very frustrating to say the least!

I like xanax at times like these. LOL I just had an epidural and the process isn't bad, BUT getting an IV is another story! Next time I will definitely ask about taking xanax beforehand.

I hope it all works out well for you!

hugs