Problem's with LP

[Sissy]

I had an LP done yesterday (26hrs ago). While having an LP done to check on my MS progress on the Gilenya.

While under X-ray machine, I immediately started having problems. I had to be stuck 3X's because each time I had terrible "shock" all down my rt. leg, rt. buttocks and rt. pelvic region. The radiologist had a hard time getting enough fluid.

While waiting in the recovery rm the pain appeared to be getting somewhat worse so the Dr was called in to access the situation. He told me that the nerves in the areas were probably irritated but not damaged due to the fact that these needles were not the type that were sharp on the end. They simply pushed the nerves aside.

I was instructed to lay flat for 24 hrs.and only get up for the bathroom. The pain seemed to get worse. On a scale of 1 to 10 ( 10 being the worst you ever felt!) it is at least a 10! If I lay perfectly still I have a throbbing, burning pain. If I move in any way it is a very sharp stabbing pain like what I would imagine a tazer gun would feel like!! Horrible!!

When I go to the bathroom it is pure hell! Not to be gross but the tissue paper feels like it has huge grass burs in it! Just sitting here writing this is pure hell! I burn, sting, ache so bad I can barely sit here!! Please help!!

[there]

Sorry you are having such an awful time. Really awful headaches are mostly what some us have experienced. I don't know what happened to you, but I would call your doctor ASAP as that is not a normal side effect. I was not under an x ray machine either, but I had mine years ago, perhaps they do it differently now.

[Sissy]

Thank you for your input! I tried to contact my Dr but was unable to reach him. I remember that the Dr that did the tap stated that it was a traumatic tap and fluid was not clear. It was pink! I wonder if it will mess up the test? I did call my neuron and leet him know. But I will not go back for another one!

I am still getting painful shocks/spasms when I put my foot down the wrong way . or even reach over my head to get something out of the cabinet. My pubis and down through the rectum feel like I have boils or cuts and they burn!

My home health nurse comes tomorrow so I guess I'll see what she says.

[Koshtoo]

Did you say the LP was to check your progress on Gilenya? Is that common? I've been on Gilenya for about 7 months, and other than blood work, an exam and a planned MRI soon, no one has mentioned an LP and I haven't seen anything about it in the literature.

[Sissy]

Leave it to me to get messed up! I have been on G for 3 yrs and done very well no new lesions or big flare ups. But he said that their has been reports about problems with illnesses ( immune suppressant ) and cancers.

I have had 2 battles with Metastatic Malignant Melanoma in '87 and '88 that became stage 4. I was given a few yrs to live. TA-DAA!So maybe that has something to do with it. But if given a choice, I will stick with the G. It was my first and last "LP"..