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VEP & neuro visit today
Aug 26, 2009 04:00PM
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Wow it has been a trying few days! My brother inlaw has been in ICU for 2 weeks due to a botched 14 hr back surgery & his kidneys shut down, then last night I got a call that my grandmother might not make it through the night (shes hanging on barely but expect to get the news anytime that she's gone). I don't want her to suffer any longer but mabey its selfish but I just don't want her to die on my Birthday. I had to be @ the hospital for the evoked potentials @ 7:30 am , the test for the most part weren't that bad until they put the electrodes on my leg & ankle & WOW....it hurt! It sent me into spasm & I'm still having them! The L. leg went smoothly but she kept having this funny look on her face & readjusting the electrodes on my R. leg so I don't know what that was about. I went from there to check on my brother inlaw at another hospital (he was flown there from that awful excuse of a place I call my local hospital). Then I went to the neuro for my results. He hadn't got back the tests for IgG or O-bands but everything else was normal & he said that the EPs were normal also. I think they send some of the LP tests to Mayo Clinic. I have to go back in 3 months & for another MRI in 6 months. He doesn't want to put me on DMDs just yet (so evidently he's still thinking MS), but I have to continue on the steroids & he upped my zanaflex. He says due to the side effects of the injections (DMDs) he wants to wait & try the steroids 1st. They are helping with my eye pain but its making my insomnia worse. The way he explained it is this: we know something is wrong & we know I have spots on my brain but we have to wait for it to rear its ugly head before he can dx me & start me on DMDs. He says MS is a fickle disease, you can see all the signs one day & mabey not the next. He told me to avoid heat at all costs & he wants to check in on me in 3 mo to see if anything is different before the MRI in 6 mos. He told me to call him if anything new happens or I get worse. Evidently my MRI didn't show any active lesions so he needs more definative proof. Yes, I was sure hoping for answers but at the same time he's already done more for me in the last 2 weeks then all the others have in 3 yrs so I feel I can trust him & he is going to call me when he gets the rest of the LP results (hes really good about personally calling me to answers questions & to go over test results). For now I guess I'll keep praying & Thank God that He raises me up & for my faith or I'd been insane at this point. Has anyone ever had the spasms after EPs or had a "burning spine" after the LP??
Hey Tammy,
You sure have a lot on your plate and been through a lot as well.
Your neuro sounds like he is approaching your case in a reasonable way. He is interested and is trying to do the right thing for you from what I can tell. By all means, call him if you start having any new or increased symptoms during the next 3 months. And since he hasn't received the IgG and OCB results yet, you might want to touch bases with his office next week to see if they came in yet. You can bet if they are positive that he will probably be calling you. I think this is a good guy to stick with while you all sort this out. Oh and remember what I said about the evoked potentials and if they are normal...That doesn't mean you don't have MS.
So, what did you do for your birthday? Perhaps there is a lot of family drama going on right now to celebrated, but I hope you did something that is special and meaninfgul for you on this day even if it is to remember you mother for bringing you into the world. That is what I did one year when I was in a similar situation as you are now. It was a simple B-day no cake or presents, just a day of rememberance.
I hope your BIL's condition improves soon and also that when it is your grandmother's time to pass that it will be be in peace.
Love and hugs,
Julie
You sure have a lot on your plate and been through a lot as well.
Your neuro sounds like he is approaching your case in a reasonable way. He is interested and is trying to do the right thing for you from what I can tell. By all means, call him if you start having any new or increased symptoms during the next 3 months. And since he hasn't received the IgG and OCB results yet, you might want to touch bases with his office next week to see if they came in yet. You can bet if they are positive that he will probably be calling you. I think this is a good guy to stick with while you all sort this out. Oh and remember what I said about the evoked potentials and if they are normal...That doesn't mean you don't have MS.
So, what did you do for your birthday? Perhaps there is a lot of family drama going on right now to celebrated, but I hope you did something that is special and meaninfgul for you on this day even if it is to remember you mother for bringing you into the world. That is what I did one year when I was in a similar situation as you are now. It was a simple B-day no cake or presents, just a day of rememberance.
I hope your BIL's condition improves soon and also that when it is your grandmother's time to pass that it will be be in peace.
Love and hugs,
Julie
Hi, Tammy....I was just thinking of you so thought I'd check your journal to see how your tests went.....apparently, you've had a LOT going on in your life this past week. Wow....it never seems to rain but it pours, huh? I am saying prayers for your brother in law and your Grandmother and hope that you had a nice birthday, regardless of the situation. Now that you mentioned the needles in the legs, etc....I think I can identify with at least some of the tests they did....the EMG/nerve conduction series. Yes, when they turn up that machine, you can literally have that leg fly right off the table, it seems. Not fun. However, it sounds like your doc is taking reasonable precautions with your case, while not going overboard. MS IS very difficult to diagnose and you don't want to give someone that diagnosis that will go with them throughout their medical life unless you're absolutely sure.
As for the "burning spine" after the lumbar puncture.....I think there's probably a chance that the needle hit a nerve when they tried to get it in - like 6 times, right? Something like disturbing a nerve might cause that burning feeling....but hopefully, it disappeared fairly quickly. That is not like a spinal fluid leak where you get a HUGE headache that puts you flat on your back for days or weeks. I know that when I had my cervical spine surgery, my shoulders burned for almost three weeks until the nerves settled down. I couldn't move an inch without horrible pain, like a million needles being injected at once. Hope you're better now. Keep us posted on your situation and I will continue to think of you and pray that your family has the strength to deal with whatever comes your way... Mary Jo
As for the "burning spine" after the lumbar puncture.....I think there's probably a chance that the needle hit a nerve when they tried to get it in - like 6 times, right? Something like disturbing a nerve might cause that burning feeling....but hopefully, it disappeared fairly quickly. That is not like a spinal fluid leak where you get a HUGE headache that puts you flat on your back for days or weeks. I know that when I had my cervical spine surgery, my shoulders burned for almost three weeks until the nerves settled down. I couldn't move an inch without horrible pain, like a million needles being injected at once. Hope you're better now. Keep us posted on your situation and I will continue to think of you and pray that your family has the strength to deal with whatever comes your way... Mary Jo
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