lilc
06-16-2005, 04:14 PM
Had neuro appt today, scheduled for EEG and EMG. Neuro looked at MRI and cancelled those, did visual EP instead. In 3 weeks I have the other 2 EPs and the grand finale in 4 weeks, the wildly popular Lumbar Puncture!!! We have moved from "I don't think it is MS" to "possible MS". I do like my neurologist, she is very open, we discuss things, and I do appreciate her canceling the EMG which she said was very expensive and somewhat "tortuous"! She didn't tell me THAT when she ordered it -- lol! She claims she is very good at LPs and will give me something to calm me, as that is the test I most dread.
She gave me a Rx for neurontin, will have to read up on that, but she thinks it will help the tingle, numbness and L'Hermittes.
She also told me don't panic and stay off the internet. What she doesn't yet understand is that I find COMFORT on this board. It is BECAUSE OF THIS BOARD that I am absolutely not panicky! I understand completely that "possible MS" is a long way from "conclusively MS", and humbly request permission to continue to share my journey with you all, with deepest gratitude.
She gave me a Rx for neurontin, will have to read up on that, but she thinks it will help the tingle, numbness and L'Hermittes.
She also told me don't panic and stay off the internet. What she doesn't yet understand is that I find COMFORT on this board. It is BECAUSE OF THIS BOARD that I am absolutely not panicky! I understand completely that "possible MS" is a long way from "conclusively MS", and humbly request permission to continue to share my journey with you all, with deepest gratitude.
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baddoey
06-16-2005, 04:37 PM
my neuro told me to stay off the internet as well - whatever. it is human nature to try and find out what is going on with your body, to search for answers and find similiar folks out there that can empathize and give support and understanding. Doctors do what they can, but quite often I have found that they have to separate themselves emotionally from the situation - esp when you are talking about MS bc there is no cure. .
marion06095
06-16-2005, 04:51 PM
I think that people who have never done much with the Internet don’t understand what a people-to-people place it is. It is, of course, a place where you can look up medical worst-case scenarios, but it is also a place where you can talk to people who have been where you are. Unless your doctor has MS, even she can’t do that. Perhaps if your doctor visited us all here, and saw what a caring place it is, she might actually recommend it to her patients.
KelliD
06-16-2005, 05:03 PM
Hey Lilc....I'm smiling at your neuro's order to stay off the net. My internist, "Dr. Pit Bull," <grin> told me TO get on the net, research EVERYTHING...that increasing my knowledge would not only help ME, but it would help her because I could begin to ask appropriate questions and better describe my symptoms.
I like my neuro...he mostly just grunts unless I push him into conversation which - being in radio - I simply MUST! ha!
Don't stop searching the net...ever. Don't you DARE stop sharing your journey with us!! Encouragement is a two way street. It helps to give and get it!
And as for that lumbar puncture...well, I've shared that my sister has MS and when she had an LP (simply called a SPINAL TAP back in the day) it was quite an ordeal. So I was TERRIFIED. But then the doc administering the test explained what he would be doing...he numbed the spot where I was to be poked...and it was honestly no worse than getting a flu shot. So hang in there!! You've got a big calling on your life, you know. You will be able to look back on all of this one day and call it "a bump in the road." I'm cheering for you!
I like my neuro...he mostly just grunts unless I push him into conversation which - being in radio - I simply MUST! ha!
Don't stop searching the net...ever. Don't you DARE stop sharing your journey with us!! Encouragement is a two way street. It helps to give and get it!
And as for that lumbar puncture...well, I've shared that my sister has MS and when she had an LP (simply called a SPINAL TAP back in the day) it was quite an ordeal. So I was TERRIFIED. But then the doc administering the test explained what he would be doing...he numbed the spot where I was to be poked...and it was honestly no worse than getting a flu shot. So hang in there!! You've got a big calling on your life, you know. You will be able to look back on all of this one day and call it "a bump in the road." I'm cheering for you!
kchs1
06-16-2005, 05:38 PM
Why Is Ur Neurologist Taking So Long To Find Out Whats Going On?
My Dr Sent Me To A Neurologists Right Away...being June 2nd, 2005. By Monday June 6th 2005, I Was Admitted To The Hospital. All Sorts Of Tests And More Tests Were Done. By 7.30 P.m On June 9th I Was Diagnosed And Started Immediately On Iv Steriods.
I Was Diagnosed A Week Ago. Still Trying To Understand. I Mean I Was Lying In The Hospital For 7 Days With Iv Lines And Getting Shots 3 Times A Day... But I Can Actually Lift My Legs Now. So I Guess Im Lucky They Worked Quick. I Can Actually Form A Lil Baby Step. I Couldn't For The Past Couple Months It Was A Drag Not A Step.
I'm 25 And Went From Over-over Active To None Active.
Those Of U With No Pain, Say Thank God Because The Pain Is Excrutiating.
Trying To Cope And Staying Positive... Lets Keep Hope Alive.
My Dr Sent Me To A Neurologists Right Away...being June 2nd, 2005. By Monday June 6th 2005, I Was Admitted To The Hospital. All Sorts Of Tests And More Tests Were Done. By 7.30 P.m On June 9th I Was Diagnosed And Started Immediately On Iv Steriods.
I Was Diagnosed A Week Ago. Still Trying To Understand. I Mean I Was Lying In The Hospital For 7 Days With Iv Lines And Getting Shots 3 Times A Day... But I Can Actually Lift My Legs Now. So I Guess Im Lucky They Worked Quick. I Can Actually Form A Lil Baby Step. I Couldn't For The Past Couple Months It Was A Drag Not A Step.
I'm 25 And Went From Over-over Active To None Active.
Those Of U With No Pain, Say Thank God Because The Pain Is Excrutiating.
Trying To Cope And Staying Positive... Lets Keep Hope Alive.
lilc
06-16-2005, 07:27 PM
Kchs - the symptoms I am having are not debilitating, not much pain, mostly very annoying. I actually feel very fortunate that I've only been at this for two months, seems many people take much longer to get dx.
I am so sorry you are in so much pain, and that it is coming at you so fast. I believe you will find great support on this board. You should also look for support groups in your area. Hope we keep hearing from you, and horray for baby steps!!!
I am so sorry you are in so much pain, and that it is coming at you so fast. I believe you will find great support on this board. You should also look for support groups in your area. Hope we keep hearing from you, and horray for baby steps!!!
fancycanelady
06-16-2005, 11:38 PM
I agree with KelliD, back in the "day" spinal taps were excruciating, (I had 3 in the early 70's) but now, they are nothing more than a little inconvience. Hang in there.
kchs1
06-16-2005, 11:47 PM
I Neglected To Mention That The First Thing My Neuro Told Me To Do Was To Join An Ms Society And Do Lots Of Research.
kchs1
06-16-2005, 11:53 PM
Thank U Lilc. I Look Forward To The Support Here. Thanks Guys It Means So Much. I Just Pray For More Baby Steps Cause After Baby Steps Comes Actual Steps.
lilc
06-17-2005, 12:14 AM
And I forgot to mention that I honestly do thank God EVERY day that I am still here and still functioning. I got in that habit before I got sick, it is the only GOOD habit I have! You have a lot of life to live yet, K, fight for it. I'm praying that your pain goes away completely and your legs will take you farther than you could ever imagine.
kchs1
06-17-2005, 04:48 PM
Thank U So Much Lilc. See U When U Get Back Online.
cookingmom
06-17-2005, 10:50 PM
Hi, Just wanted to give my 2 cents on the lumbar puncture - I had mine about 2 months ago. I was shocked when he told me that he had 1/4 of the fluid out because I was still mentally bracing for him to put the needle in. I didn't know the needle was in - I never felt it go in. The only thing I felt was a LITTLE pinch when he gave me the numbing agent - that's it. I was so nervous about it and it was a piece of cake.
I hope your goes as well as mine did. Good luck to you.
I hope your goes as well as mine did. Good luck to you.
lilc
06-20-2005, 09:03 PM
I will remain optimistic, and will remember that I've been run over by a truck. That did not hurt (until people suggested that it ought to). It just SOUNDS so eeeewwwy, especially when my primary symptoms seem to be "spine-centric". I'm certain I would be less afraid if I had a mom cooking something nice for after.
Thanks, cookingmom!!!
Thanks, cookingmom!!!