kimpossible67
04-24-2007, 06:59 PM
I have MS. Dx'd today out of the blue. He was going to send me to a specialist but the 2nd vep and the opthamalogist letter must have put it over the top. I have been told repeatadly that I would never get a diagnosis with a negative spinal tap but the Neuro says that is completely possible when everything else says MS.
I will be starting on Copaxone soon. He says Relapsing/Remitting. Zanaflex for muscles, Xanax for whatever.
So, to those of you with a positive everything else and a negative spinal tap, don't give up. It IS possible to have MS without it.
I will be starting on Copaxone soon. He says Relapsing/Remitting. Zanaflex for muscles, Xanax for whatever.
So, to those of you with a positive everything else and a negative spinal tap, don't give up. It IS possible to have MS without it.
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unclesam612
04-24-2007, 08:21 PM
I guess anything is possible but I would still want a mri and spinal tap. Before starting on MS therapy drugs I would want to be sure. The zanzflex and xanax are just symptom control.
lilc
04-24-2007, 09:38 PM
You know, it could be time again to mention the diagnostic criteria. I've found more than one on the web, but they are similar. It seems that the dx can come from hitting any one of the "accepted" combinations of criteria. And yes, I've certainly heard of folks having a negative LP and still having MS (or a negative MRI, etc.).
In any event, congrats(?) for finally getting an answer! I say congrats because I know what a huge relief it was for me when my neuro finally said the words, "You have MS." Other folks would probably think we are completely insane, but considering the road to those words...
I've been on Copaxone since Nov. 05, things have been going very well. Hope it is the same for you!
In any event, congrats(?) for finally getting an answer! I say congrats because I know what a huge relief it was for me when my neuro finally said the words, "You have MS." Other folks would probably think we are completely insane, but considering the road to those words...
I've been on Copaxone since Nov. 05, things have been going very well. Hope it is the same for you!
kimpossible67
04-25-2007, 08:10 AM
I have had EVERY test possible. MRI of brain and c-spine, 2 visual evoked potentials, CT scan, spinal tap (neg). EEG of my brain (or EMG) and auditory. I've been blood tested for lupus, lyme, HIV, mathanias gravis (sp), myopothy. I've seen an opthamologist and he noted changes in my eyes and was THE ONE that said it was MS, he wrote a letter to my Neuro. My neuro said he could send me to Wayne State to the MS specialist but he didn't think he'd say much different than what he was saying. In his words, he ruled out everything else and all that was left was Ms. I'm just relieved to know I'm NOT crazy. We can deal with anything if we know what we are up against.
kimpossible67
04-25-2007, 08:12 AM
I've been on Copaxone since Nov. 05, things have been going very well. Hope it is the same for you![/QUOTE]
Is "remembering" areas to inject difficult? How about side-effects? Tell me your experiences, pretty please.
Thanks!
Is "remembering" areas to inject difficult? How about side-effects? Tell me your experiences, pretty please.
Thanks!
lilc
04-26-2007, 09:23 AM
The Copax folks will send you lots of things to help you chart your injection sites, but I have sort of adopted a "Macharina" system: R-arm, L-arm, R-hip, abdomen, L-hip...and I know which site based on what day of the week it is. The most important thing is consistency, so whatever you find works for YOU, go for it!
It IS nice to know we aren't crazy, isn't it???!
It IS nice to know we aren't crazy, isn't it???!
kimpossible67
04-26-2007, 11:14 AM
The Copax folks will send you lots of things to help you chart your injection sites, but I have sort of adopted a "Macharina" system: R-arm, L-arm, R-hip, abdomen, L-hip...and I know which site based on what day of the week it is. The most important thing is consistency, so whatever you find works for YOU, go for it!
It IS nice to know we aren't crazy, isn't it???!
Wellllllllllll, I'am a little crazy but now I can at least blame it on those pesky lesions on my brain, lol!
Thanks for the info. I love the Macarena reference, now I'll be singing it all day:)
It IS nice to know we aren't crazy, isn't it???!
Wellllllllllll, I'am a little crazy but now I can at least blame it on those pesky lesions on my brain, lol!
Thanks for the info. I love the Macarena reference, now I'll be singing it all day:)
MSNik
04-26-2007, 06:16 PM
Got another one for you Kim. STAR Macarena.
S- Stomache
T- thigh
A- Arm
R- Rear
You start on the right side one week and go to the left side the following week. It all sounds good, but I do suggest writing it down on a calendar or day planner....most the time I remember where my last injection was, but forget what side of the body I was on!!! Silly, we with MS are supposed to remember this?? LOL. Im lucky I can remember what I had for dinner last night.
Good luck to you. Been on injections almost 8 months now and after about 5 months, stopped having flu-like symtoms and side effects. I feel pretty darned good overall.
Hugs,
Nikki
S- Stomache
T- thigh
A- Arm
R- Rear
You start on the right side one week and go to the left side the following week. It all sounds good, but I do suggest writing it down on a calendar or day planner....most the time I remember where my last injection was, but forget what side of the body I was on!!! Silly, we with MS are supposed to remember this?? LOL. Im lucky I can remember what I had for dinner last night.
Good luck to you. Been on injections almost 8 months now and after about 5 months, stopped having flu-like symtoms and side effects. I feel pretty darned good overall.
Hugs,
Nikki
kimpossible67
04-27-2007, 08:28 AM
Got another one for you Kim. STAR Macarena.
S- Stomache
T- thigh
A- Arm
R- Rear
You start on the right side one week and go to the left side the following week. It all sounds good, but I do suggest writing it down on a calendar or day planner....most the time I remember where my last injection was, but forget what side of the body I was on!!! Silly, we with MS are supposed to remember this?? LOL. Im lucky I can remember what I had for dinner last night.
Good luck to you. Been on injections almost 8 months now and after about 5 months, stopped having flu-like symtoms and side effects. I feel pretty darned good overall.
Hugs,
Nikki
I can't imagine how they expect people with memory issues to remember something as important as to where to inject, lol. Insane! I will remember yours and THANK YOU!
Hugs to you,
Kim
S- Stomache
T- thigh
A- Arm
R- Rear
You start on the right side one week and go to the left side the following week. It all sounds good, but I do suggest writing it down on a calendar or day planner....most the time I remember where my last injection was, but forget what side of the body I was on!!! Silly, we with MS are supposed to remember this?? LOL. Im lucky I can remember what I had for dinner last night.
Good luck to you. Been on injections almost 8 months now and after about 5 months, stopped having flu-like symtoms and side effects. I feel pretty darned good overall.
Hugs,
Nikki
I can't imagine how they expect people with memory issues to remember something as important as to where to inject, lol. Insane! I will remember yours and THANK YOU!
Hugs to you,
Kim
MSNik
04-27-2007, 09:56 AM
Kim almost a year into injections, I still have to look in writing to see where I injected last. WRITE IT DOWN! My company sent me a planner, which I keep with my alcohol wipes and I also use something called Arnica, a clear, natural gel. I use the arnica to massage the area after the injections, and it really does help to keep both the swelling and the red marks to a minimum. You can find it in any health food store, or health food asile at a good market. Just make sure you get the gel, not the cream!
Anyway, it does sound rediculous to think we can remember what we had for dinner last night, let alone where the last injection was- but really, write it down each time you do it, that way you have something to refer back to...its also a good thing to keep in the planner injectioin side effects so that you have something to take with you, or refer to when the company callls you to follow up or you see your doctor. ITs an all around good thing..
Let us know how you do. Good luck.
Nikki
Anyway, it does sound rediculous to think we can remember what we had for dinner last night, let alone where the last injection was- but really, write it down each time you do it, that way you have something to refer back to...its also a good thing to keep in the planner injectioin side effects so that you have something to take with you, or refer to when the company callls you to follow up or you see your doctor. ITs an all around good thing..
Let us know how you do. Good luck.
Nikki