3love
06-05-2007, 08:10 PM
I was wondering (after researching, came to find out that Cadasil is alot similar to ms) how do you know for sure it is ms? Have any of you heard of this disease? Apparently, you can have all the symptoms of ms and the brain lesions. Did your neuro test you for this disease?
This scares me!
Take care,
J
This scares me!
Take care,
J
Sponsor
MSNik
06-05-2007, 08:54 PM
chicky chicky- if I could, Id reach out and cuff you! :) You guys wonder why I preach all the time that researching is SOOO BAD FOR YOU! This is why. Youre scared of a disease which you HAD NEVER HEARD OF until you went nuts and researched symtoms!!! :p Rest assured, Dr. J will rule this out too....youre not going to go in there and ask him if you have this, are you???!!:dizzy:
Julia, you DO KNOW I SAY ALL OF THIS WITH A SMILE AND LOVE IN MY HEART,RIGHT? PROMISE ME YOU KNOW I AM TEASING YOU! :angel:
Youre absolutely right to be scared of the what if's...however, you cant stress over this. YOU of all people, should be relaxing and trying to simply exist until your appointment. Youre so close to getting to the next step....why bother stressing yourself out looking for more answers? Even if someone told you that you COULD have this disease you wont know until you see the specialist anyway...right? So why stress yourself out wondering about things that you didnt even know existed a few hours ago? Buddy, you need to seriously stay off the researching until you are told something conclusive...then by ALL means learn everything you can. Until then, please trust me, that you are going to be in good hands and there is NOTHING you can do but give this one up to a higher power. Whatever will be, will be. Until you know WHAT IT IS please, PLEASE, try to enjoy the next few weeks and try to relax....ok?
Hugs to you!!!!
Nikki
Julia, you DO KNOW I SAY ALL OF THIS WITH A SMILE AND LOVE IN MY HEART,RIGHT? PROMISE ME YOU KNOW I AM TEASING YOU! :angel:
Youre absolutely right to be scared of the what if's...however, you cant stress over this. YOU of all people, should be relaxing and trying to simply exist until your appointment. Youre so close to getting to the next step....why bother stressing yourself out looking for more answers? Even if someone told you that you COULD have this disease you wont know until you see the specialist anyway...right? So why stress yourself out wondering about things that you didnt even know existed a few hours ago? Buddy, you need to seriously stay off the researching until you are told something conclusive...then by ALL means learn everything you can. Until then, please trust me, that you are going to be in good hands and there is NOTHING you can do but give this one up to a higher power. Whatever will be, will be. Until you know WHAT IT IS please, PLEASE, try to enjoy the next few weeks and try to relax....ok?
Hugs to you!!!!
Nikki
duttin
06-05-2007, 11:48 PM
J,
I agree with NIkki,someone needs to pull the plug on your computer.There are so many diseases that mimic MS that I could go on forever with them.
Please take a break and give yourself a peice of mind.I know the fear of not knowing,I was there for 2 years and its frightful.But what was scarier was everything that mimics MS and researching them.
You are seeing a new neuro,please give him a chance.He sounds great.
I know we all get antsie before that appointment,find yourself a good book or a set of movies and relax.
I agree with NIkki,someone needs to pull the plug on your computer.There are so many diseases that mimic MS that I could go on forever with them.
Please take a break and give yourself a peice of mind.I know the fear of not knowing,I was there for 2 years and its frightful.But what was scarier was everything that mimics MS and researching them.
You are seeing a new neuro,please give him a chance.He sounds great.
I know we all get antsie before that appointment,find yourself a good book or a set of movies and relax.
3love
06-06-2007, 12:21 AM
Hey guys, you are both right! Nikki, you sound just like my husband...everything you just said, he has said time and time again.:rolleyes: :) I know I NEED to lay off the computer for a bit. My hubby yells at me when he sees me on here.:eek: He says that I will make myself crazy researching. I am sooo stressed out, I start thinking of the worst possible case! My hubby has threatened me by saying he will cancel my online service...yikes!
I DO know that whatever it is, it is, and that there is a higher power who deciedes that, but it is still hard to take, you know?
Yes, Nikki your are correct in saying that I had no clue of this cadasil disease (until a past poster mentioned it and then of course, I looked it up and thought, oh what if this is what I have?)
Nikki- I know you are just trying to help and I THANK YOU FOR THAT!
YOU ARE GREAT, remember that, ok?
Hugs,
Julia
I DO know that whatever it is, it is, and that there is a higher power who deciedes that, but it is still hard to take, you know?
Yes, Nikki your are correct in saying that I had no clue of this cadasil disease (until a past poster mentioned it and then of course, I looked it up and thought, oh what if this is what I have?)
Nikki- I know you are just trying to help and I THANK YOU FOR THAT!
YOU ARE GREAT, remember that, ok?
Hugs,
Julia
MSNik
06-06-2007, 04:27 PM
Julia,
Youre pretty great, too! I know where you are at mentally. I was lucky, my dx came so quickly that I didnt have time to think; however the few weeks of waiting for test results and seeing a specialist were enough to show me JUST how BAD the waiting can be. I feel for you and everyone else who is going thru this. I "yelled at KLC" not too long ago too- telling her that she is going to give herself a nervous breakdown if she keeps coming up with this stuff. Its true. Trust me. Trust Nuffs. You really need to trust your doctor. And, since I personally can vouch for him.......;)
Youre going to be fine. Listen to your husband. And Nuff's suggestion too. Immerse yourself in a trashy novel, or a good movie. Rent them by the dozens and just keep your mind occupied. If you can, rest and sleep as much as you can, thats whats best for your mind and body! And, write to me. Im here Julia.....
Nikki
Youre pretty great, too! I know where you are at mentally. I was lucky, my dx came so quickly that I didnt have time to think; however the few weeks of waiting for test results and seeing a specialist were enough to show me JUST how BAD the waiting can be. I feel for you and everyone else who is going thru this. I "yelled at KLC" not too long ago too- telling her that she is going to give herself a nervous breakdown if she keeps coming up with this stuff. Its true. Trust me. Trust Nuffs. You really need to trust your doctor. And, since I personally can vouch for him.......;)
Youre going to be fine. Listen to your husband. And Nuff's suggestion too. Immerse yourself in a trashy novel, or a good movie. Rent them by the dozens and just keep your mind occupied. If you can, rest and sleep as much as you can, thats whats best for your mind and body! And, write to me. Im here Julia.....
Nikki
CJRT
06-07-2007, 10:32 AM
Several years ago, I worked for an OB/GYN and she would get so frustrated when patients would come in after having been on the computer researching stuff.
As soon as the words: "I've been on the computer............" would come out of a patients mouth, you could just see her get her dander up. And 9 times out of 10, the stuff the patient had found was not any where close to what they actually had.
She basically would tell them. Until we know for sure, there is no point in scaring yourself, stay off the computer and quit researching. That's MY job and what you are paying me for.
I've always considered that good advice. Let the doctors do their job and then after they tell you what it is, then do all the research you can.
Doctors love an informed patient and one that is going to be knowledgeable about their problems as it makes the dr. job easier. But they don't like uninformed self diagnosis, or at least the one I worked for didn't. She said that just makes her job that much harder and her job is to help the patient.
I know what you are going through as the not knowing, the waiting and all are scary and there is so much available on our computers that we can scare ourselves silly reading about stuff that probably doesn't even pertain to our problems.
Hang in there and wait to hear what your doctors have to say. Then do your reasearch based on their findings.
As soon as the words: "I've been on the computer............" would come out of a patients mouth, you could just see her get her dander up. And 9 times out of 10, the stuff the patient had found was not any where close to what they actually had.
She basically would tell them. Until we know for sure, there is no point in scaring yourself, stay off the computer and quit researching. That's MY job and what you are paying me for.
I've always considered that good advice. Let the doctors do their job and then after they tell you what it is, then do all the research you can.
Doctors love an informed patient and one that is going to be knowledgeable about their problems as it makes the dr. job easier. But they don't like uninformed self diagnosis, or at least the one I worked for didn't. She said that just makes her job that much harder and her job is to help the patient.
I know what you are going through as the not knowing, the waiting and all are scary and there is so much available on our computers that we can scare ourselves silly reading about stuff that probably doesn't even pertain to our problems.
Hang in there and wait to hear what your doctors have to say. Then do your reasearch based on their findings.
3love
06-07-2007, 10:37 AM
Nikki, i will try my friend:) You nailed it, I was close to a nervous breakdown a couple of months ago!. I literally used to just sit with my laptop and search, search, search! And of course, cry, cry,cry!
I used to walk around with the "what if's" on my mind, all day. Now i'm not so bad. Lately, I have been going out more, trying to keep my mind occupied with something else, like working on my landscaping. It does help!
I know you have a procedure today, and I wish you lots of luck. Whatever it is your going for, I hope it truns out fine. I wish you health and happiness my friend!
p.s good idea about the trashy novel, but I don't need to get all worked up, (if you know what I mean);) my hubby has a bad cold!
Hugs
Julia
I used to walk around with the "what if's" on my mind, all day. Now i'm not so bad. Lately, I have been going out more, trying to keep my mind occupied with something else, like working on my landscaping. It does help!
I know you have a procedure today, and I wish you lots of luck. Whatever it is your going for, I hope it truns out fine. I wish you health and happiness my friend!
p.s good idea about the trashy novel, but I don't need to get all worked up, (if you know what I mean);) my hubby has a bad cold!
Hugs
Julia
MSNik
06-07-2007, 07:45 PM
Julia, I cant believe that we live in the same state, have many of the same issues, and right now, Id kill to reach out and touch "someone", but we are just nicknames on a board. LOL. Oh well, IM grateful for what Ive got right now. Sitting here all alone, feeling pretty crappy, both physically and mentally..I think Ill post on this and see if anyone offers any suggestions on what IM going thru. Meanwhile, the procedure went fine, if you consider the fact that I fell flat on my face when it was over, fine. It was painful. Very VERY painful...however, they sent me home, told me to put my feet up and stay put for 24 hours. guess Ill live....
Thank you for caring...im glad that what I wrote hit home with you...Im always here, just tonight, Im basically useless....
good to know YOURE not in crisis mode right now, its my turn!:D
hugs,
N
Thank you for caring...im glad that what I wrote hit home with you...Im always here, just tonight, Im basically useless....
good to know YOURE not in crisis mode right now, its my turn!:D
hugs,
N
onlyjulie
06-07-2007, 09:43 PM
First I'd like to state researching can scare the bejeebies out of a person, and I do almost agree what the others are saying however, I am the very few that gave my doctor the dx after researching it on the computer and he did poopoo me away... I gave him the information on Devic's Disease which is very rare.. but.. I guess I am a rare person cuz 5 months after I gave him the information.. thats what I was diagnosed with.... if he would have started the meds faster, I might not be as bad off as I am now, but I guess now I'll never know.....
Julie
Julie
duttin
06-07-2007, 09:59 PM
Julia,
I'm glad to hear that your getting out and working on your land scaping,its good for the mind and soul.
Now when your done ,my yard could use some help(lol)
The internet is very useful after a DX,but even then it can be mentally stressful.
Your appt.will be soon.Please keep your mind occupied until then.
I'm glad to hear that your getting out and working on your land scaping,its good for the mind and soul.
Now when your done ,my yard could use some help(lol)
The internet is very useful after a DX,but even then it can be mentally stressful.
Your appt.will be soon.Please keep your mind occupied until then.
3love
06-08-2007, 04:26 PM
nuffs- uhhh...no don't think so..:D I have plenty yard to deal with!
J
J