MRI...MRA and very eventful spinal tap today!!

[grandmalaurie59]

Hello everyone...

I thought I would let you know what has happened so far.....

Had my MRI and MRA on Saturday....Got results today (I love the Cleveland Clinic)
Even though I have felt like death there are no changes of my brain stem lesions and nothing new either. Which is good I guess.

I had my spinal tap or shall I say spinal taps today.....are you ready for this.....it took 2 hours, 2 doctors, several X-rays and 6.....YES 6 attempts to get my fluid out!! Doctor #1 had to put the needle in 5 different places and fish around, but no fluid would come out!! He finally called in another doctor who tried again with the 5th needle still in place and no success....so he put it in the 6th spot and voila out came the fluid...One SLOW drip at a time.....they tilted the table almost straight up and 20 minutes later they got 4 viles of spinal fluid. Yes, it was very painful at times, BUT  when I knew what to expect it wasn't so bad. It actually hurt almost as bad when the nurse ripped off my IV tape!!

Believe it or not I am not going to be afraid of spinal taps anymore....I am a pro now. LOL!  After the first 3 sticks, I knew what to expect and it wasn't so bad. The nurses and doctors in the room couldn't believe I didn't complain. I was actually joking around with them.

They told me I was the best patient ever. Dr #1 felt so bad and apologized several times. I told him...that's ok, at least you didn't give up! I actually felt sorry for him....he was so embarrassed when the other doc did it right away.

I wasn't leaving there until they got that fluid!!!! I HAVE to find out what is wrong with me!!!!!!!!!!!!!!!!!

QUESTION:   I looked up my spinal tap tests that they are doing......they are also testing me for neurosyphillis. Do they test everyone for that??

Thanks for your responses,

Laurie :)

[immisceo]

Ditto on the neurosyphilis comments. It's just good medical practice as the list of symptoms for tertiary/neurosyphilis sounds *awfully* familiar to most of us here. It's a differential diagnosis that they just often don't explicitly mention because it's unlikely and potentially upsetting.

My lumbar puncture wasn't straight forward either. Let's just say the event is known in my household as 'When Interns Attack', and I now know precisely how I'd go about getting information from spies/terror suspects... But you did it! All to the greater cause of answers, right?

Sorry to hear nothing conclusive came of the other tests. That must be so confusing to get a simultaneous dose of relief and frustration. You sound like you have a great attitude though. That's half the battle in these circumstances!

I hope something comes of that LP for all your troubles. Please keep in mind, as is more likely with a traumatic LP, (using that word in the technical medical sense) that you may get a headache. Well, THE headache.

I found coffee and lying horizontal incredibly helpful. Coffee works on the actual cause of the pain, which is a reduction of intracranial pressure due to a loss of CSF volume. The caffeine helps to replace the pressure. (people get headaches when they stop coffee cold turkey for a similar reason - they lose some cranial pressure, though from blood vessels versus CSF in that instance).

Not trying to jump the gun with that or worry you. But I may not be on as often anymore and your LP experience really resonated with my own, so wanted to pass that along preemptively!

[Lulu54]

You are one tough cookie to put up with that many sticks... ouch! I'm impressed by your willingnes to wait them out until it would be done right.  Yes, there is a standard set of diseases they look for through the CSF and neurosyphylis is one - they do it on everyone.  

here's hoping you get some answers next week - good luck!
Laura

[grandmalaurie59]

Thanks Alex....I didn't know the neurosyphllis was standard. I was promised that my results will be in by my appointment with my Cleveland Clinic Neuro on Monday the 24th. I checked my 3 Cleveland Clinic docs and they all did their residency at the Mayo Clinic .

I am sorry Nancy you went through ALL that and didn't get the 'fluid' !!

I looked up the symptoms of neurosyphillis and I had many of the symptoms.....yet I have a lot of neuro symptoms anyway.....

without giving too much information.....lets just say it wouldn't be impossible if I had neurosyphillis .....I divorced my ex-husband because of his cheating(s).

[HVAC]

I was tested for neurosyphillis it is standard. My husband did not understand and was angry. I tried to explain it was just routine.

They sent my results to several places including the Mayo so it took over a month to get the results. Then they tested me for Lupus and HIV and some other things.

In the end I was diagnosed with MS since I had 12 o-bands only in my CSF and not blood serum and all the other tests were negative.

Alex

[Nancy T]

Wow, Laurie, congrats on getting the tap, but what an ordeal!

After hearing your story, I wish I'd asked the radiologist who attempted MY tap to try a sixth time! I counted at least 5 sticks, maybe there were more, I'm not sure (over at least an hour). She tried the tilted table, massaging, having me cough, you name it. She also consulted with another doctor but did not bring him/her in on it after all. So I was sent home with no results. This was 2 years ago.

I'd had a previous attempt in 2003, just a blind one without x-ray, and the neuro only tried twice before giving up.

I think I'm the only undiagnosed person in the whole world with MS-suspicious symptoms who never got a spinal tap. But they act absolutely certain I don't have MS. The Lhermitte's, etc. is all in my head.

I hope you get a diagnosis at the clinic--whatever it may be. Good luck.

[grandmalaurie59]

Next Monday the 24th I see the neurologist. Next Friday the 28th I will get all the results from the other tests they took looking for adrenal tumors, carcinoid syndrome and cancer.

The Cleveland Clinic moves fast!!  :D If there are still no definite answers by next Friday I am going to ask to be tested for Mitochondrial Disease.

They didn't tell me what they were testing for....they gave me the 'orders' for the spinal fluid tests. I looked up each test to see what if what for....3 of the tests were for neurosyphillis and 2 were for MS the others I guess were to see if I had an  ect...

[Maracamama]

Wow, you're really having a rough time lately.  

I have no idea if neurosyphilis is something that is normally tested but I would imagine since they've been having such a hard time diagnosing you that they would test for just about everything while they're at it.  I was never told exactly what they were testing me for (other than ms and lyme).

Did they tell you how long you would have to wait for these results?  More of the waiting game, right?

Hope they fix you soon

Laura

[Corriel]

Heavens, what an ordeal! Congrats on sticking with it. I am one of what I understand to be lucky enough to have free flowing spinal fluid. They told me to come back for a tap anytime. Lol. I actually felt the fluid run down my lower back before they had the first vial ready.

I know they test multiple things so I am not sure about neurosyphillis but it would be good to get the best bang for your buck and let them run them all for all they put you through.

Keep us posted on your results,
Corrie