tooobuzi
04-17-2005, 09:51 AM
Deb,
How did your tests go? I hope you are feeling okay and that what ever tests they did, didn't add to things.
I had those two tests done last week, the MRI and the evoked potential. I find out Monday morning what the results of the MRI is. I already know that the EP is "normal". I am afraid that if the MRI is "normal" that the next thing is going to be the lumbar puncture. I think I might just ask if we can get all this over with at once and perhaps send me to John Hopkins and test away.
Not sure what the weather is there but we are finally having some nice sunny days. I think it is supposed to be in the 60's today (very cold for this time of year around here) and 70's next week. I hope that you will get to relax and enjoy your weekend. I'm going to open the windows and let the fresh air in.
Take care and think happy thoughts :)
Ronda
How did your tests go? I hope you are feeling okay and that what ever tests they did, didn't add to things.
I had those two tests done last week, the MRI and the evoked potential. I find out Monday morning what the results of the MRI is. I already know that the EP is "normal". I am afraid that if the MRI is "normal" that the next thing is going to be the lumbar puncture. I think I might just ask if we can get all this over with at once and perhaps send me to John Hopkins and test away.
Not sure what the weather is there but we are finally having some nice sunny days. I think it is supposed to be in the 60's today (very cold for this time of year around here) and 70's next week. I hope that you will get to relax and enjoy your weekend. I'm going to open the windows and let the fresh air in.
Take care and think happy thoughts :)
Ronda
Sponsor
blueslvr53
04-17-2005, 10:10 PM
Hi Ronda,
Sorry I havent written sooner. I spent a few days at my sisters. It was nice to get away, too bad I didnt feel better but what else is new. I am beginning to think this is my way of life now.
Well....you and I could be peas in a pod. I saw the Neuro at the University. I really liked him and he gave me a good exam and reviewed all my previous tests. But I got the same standard answer as you. He doesent think it is MS. When I asked him what it could be he said he doesent know maybe stress related(here we go again). He is ordering another test that looks closer to the vessels in the neck and head (MRA). You and I both know you dont feel this crappy from just stress. Tonite I am so dizzy that I cant wait to go to bed.
Tomorrow is back to work with a huge schedule since it will be the Drs first day back. Not looking forward to it and wonder how I will get thru the day. I really didnt expect too much from the appt at the university however I am really feeling down. Well enough about me. Hope you are feeling better and enjoying the weather. Good luck with your test results tomorrow. Let me know, I will be thinking about you...............Deb
Sorry I havent written sooner. I spent a few days at my sisters. It was nice to get away, too bad I didnt feel better but what else is new. I am beginning to think this is my way of life now.
Well....you and I could be peas in a pod. I saw the Neuro at the University. I really liked him and he gave me a good exam and reviewed all my previous tests. But I got the same standard answer as you. He doesent think it is MS. When I asked him what it could be he said he doesent know maybe stress related(here we go again). He is ordering another test that looks closer to the vessels in the neck and head (MRA). You and I both know you dont feel this crappy from just stress. Tonite I am so dizzy that I cant wait to go to bed.
Tomorrow is back to work with a huge schedule since it will be the Drs first day back. Not looking forward to it and wonder how I will get thru the day. I really didnt expect too much from the appt at the university however I am really feeling down. Well enough about me. Hope you are feeling better and enjoying the weather. Good luck with your test results tomorrow. Let me know, I will be thinking about you...............Deb
tooobuzi
04-18-2005, 09:28 PM
Deb,
Starting to wonder if we are twins. I almost feel as soon as one of us gets a dx the other will finally know what she has too. Sorry they didn't have anything better to say than "stress".
I hope work wasn't too rought today. Hopefully you have time in the day to take little breaks.
I went to the neuro for my test results. I am sure you can guess what he said. It is not MS, the EP was normal, there was nothing on the spinal MRI except for some buldging discs that I already knew about. So what does he recommend? He is giving me something for anxiety. He said "we could send you for a lumbar puncture." I asked him if he thought it was going to show anything. He said no. So I asked him why I would want to get it done then. No answer.
He decides to check me over one more time. Checked my reflexes, checks my eyes, etc. Then he tells me to stand up and close my eyes. Of course I start falling over. He says "wow". Tells me to do it again but this time is standing beside me so that he can catch me. I start falling again. He says " so you really do get out of wack". Dahhhh!! As if when I said I was feeling dizzy he tought I meant like blond dizzy or dumb or something. What the heck did he think I meant? I had already told him I have to often hold on to things so that I don't fall down. I guess I just hide things to well. Maybe next time I should stumble into his office, maybe fall down once or twice. Then maybe he would get it? (I am not mad just in disbelief that doctors can be so dumb sometimes)
He wants to find out what the doctor says that I am going to later this week. It is an inner ear specialist that is supposed to know a lot about dizziness. It would be great if he comes up with something, but I don't have much hope.
I called my boyfriend when I got out of the appointment and told him that I had heard the same ol thing. The doctor doesn't have a clue. Rod is very supportive and says that we will just keep trying different doctors. I try not to get upset because he is trying very hard to be supportive, but all I could do was cry "what do I do in the mean time?"
I am like you, almost resolved to the fact that I am going to always be like this. Just trying to figure out how to function this way.
I asked the neuro if anxiety can cause this type of dizziness, tingling, fatigue. He said yes. So I will take these meds as he directed and see what comes of it. I just know this is not caused by stress. Yes, I admit I have stress in my life but not 24/7. I would think if I had that much stress I would have jumped off a cliff or something by now!! But I guess until you prove them wrong that is what they want to go with.
I have a question for you. When you get your worst dizziness do you have any sort of pain or tightness at the base of your skull? For me at times it almost feels like someone is grabbing the back of my head really tight. Also, have you every had any neck problems? I ask because I have actually had to vertebra fused.
Maybe together we can figure this stuff out!
Sorry to have rambled on and on.
I wish you well...
Ronda
Starting to wonder if we are twins. I almost feel as soon as one of us gets a dx the other will finally know what she has too. Sorry they didn't have anything better to say than "stress".
I hope work wasn't too rought today. Hopefully you have time in the day to take little breaks.
I went to the neuro for my test results. I am sure you can guess what he said. It is not MS, the EP was normal, there was nothing on the spinal MRI except for some buldging discs that I already knew about. So what does he recommend? He is giving me something for anxiety. He said "we could send you for a lumbar puncture." I asked him if he thought it was going to show anything. He said no. So I asked him why I would want to get it done then. No answer.
He decides to check me over one more time. Checked my reflexes, checks my eyes, etc. Then he tells me to stand up and close my eyes. Of course I start falling over. He says "wow". Tells me to do it again but this time is standing beside me so that he can catch me. I start falling again. He says " so you really do get out of wack". Dahhhh!! As if when I said I was feeling dizzy he tought I meant like blond dizzy or dumb or something. What the heck did he think I meant? I had already told him I have to often hold on to things so that I don't fall down. I guess I just hide things to well. Maybe next time I should stumble into his office, maybe fall down once or twice. Then maybe he would get it? (I am not mad just in disbelief that doctors can be so dumb sometimes)
He wants to find out what the doctor says that I am going to later this week. It is an inner ear specialist that is supposed to know a lot about dizziness. It would be great if he comes up with something, but I don't have much hope.
I called my boyfriend when I got out of the appointment and told him that I had heard the same ol thing. The doctor doesn't have a clue. Rod is very supportive and says that we will just keep trying different doctors. I try not to get upset because he is trying very hard to be supportive, but all I could do was cry "what do I do in the mean time?"
I am like you, almost resolved to the fact that I am going to always be like this. Just trying to figure out how to function this way.
I asked the neuro if anxiety can cause this type of dizziness, tingling, fatigue. He said yes. So I will take these meds as he directed and see what comes of it. I just know this is not caused by stress. Yes, I admit I have stress in my life but not 24/7. I would think if I had that much stress I would have jumped off a cliff or something by now!! But I guess until you prove them wrong that is what they want to go with.
I have a question for you. When you get your worst dizziness do you have any sort of pain or tightness at the base of your skull? For me at times it almost feels like someone is grabbing the back of my head really tight. Also, have you every had any neck problems? I ask because I have actually had to vertebra fused.
Maybe together we can figure this stuff out!
Sorry to have rambled on and on.
I wish you well...
Ronda
blueslvr53
04-20-2005, 12:34 AM
Hi Ronda....
Soooo....the doctor had to catch you to believe you! Isnt that something. Do they think that we are just making this stuff up! I am still finding it hard to swallow that all these things can be caused by stress. I dont feel that I am that stressed. My kids are pretty much grown, I have a great husband and I like my job. So why am I tingling, dizzy and tired all the time!
What did they give you for the stress. When I first started having all my problems last Oct, they gave me Xanax. I have to admit it did help but the last thing I wanted was to become addicted, which can happen with Xanax. So I weaned myself off. I only take it now when I really feel bad. How are you sleeping? I am having alot of trouble unless I am really tired. Sometimes it feels like I having internal tremors, like my body cannot relax. My dizziness is more like a lightheadedness brain fog (does that make sense?) I am also having some tingling on the left side of my chest which is scaring me. I am going for a stress test on Thurs. I hate that test. I hope the Dr you are seeing this week can help with your dizziness. You really must do a good job of hiding your symptoms. I guess thats what keeps us going right!
Work turned out not being too bad but Ive been really tired when I get home. I feel like such a baby complaining about all my symptoms when I dont even have a dx. Well....I am rambling again so heres to a good rest of the week............let me know how you are doing and what the next Dr. says!.........................take care Deb
Soooo....the doctor had to catch you to believe you! Isnt that something. Do they think that we are just making this stuff up! I am still finding it hard to swallow that all these things can be caused by stress. I dont feel that I am that stressed. My kids are pretty much grown, I have a great husband and I like my job. So why am I tingling, dizzy and tired all the time!
What did they give you for the stress. When I first started having all my problems last Oct, they gave me Xanax. I have to admit it did help but the last thing I wanted was to become addicted, which can happen with Xanax. So I weaned myself off. I only take it now when I really feel bad. How are you sleeping? I am having alot of trouble unless I am really tired. Sometimes it feels like I having internal tremors, like my body cannot relax. My dizziness is more like a lightheadedness brain fog (does that make sense?) I am also having some tingling on the left side of my chest which is scaring me. I am going for a stress test on Thurs. I hate that test. I hope the Dr you are seeing this week can help with your dizziness. You really must do a good job of hiding your symptoms. I guess thats what keeps us going right!
Work turned out not being too bad but Ive been really tired when I get home. I feel like such a baby complaining about all my symptoms when I dont even have a dx. Well....I am rambling again so heres to a good rest of the week............let me know how you are doing and what the next Dr. says!.........................take care Deb
tooobuzi
04-20-2005, 08:56 PM
Howdy...
I am real curious how the appointment is going to go tomorrow. It will probably constist of me going on for about 15 minutes trying to explain all of the crazy symptoms I have had for the last year (as of May) and the doctor looking totally puzzled, he'll do a quick check in my ears and say "Looks like everything is normal." By the way the other doctor prescribed Xanax 0.25mg he said it was a very low dose. Do you know if that is low or not? Haven't started taking it yet. I only try new meds on the weekend when I know I won't have to go anywhere or do anything for work. I am a light weight when it comes to medication. I will have every possible side effect a drug can cause. By the way have you been to an ENT before? Have they checked your inner ear? I think you had told me they had.
Yes, I almost always have a hard time sleeping. I can easily go to sleep but wake up several times during the night. I am not sure why I wake up, it just seems to be because I am unable to get comfortable. I get so tangled up sometimes its not funny because I toss and turn so much. I understand the internal tremors. I have that alot. You kind of feel like you are shaking all over just on the inside. I also understand the Foggy feeling. Unless you experience it you really have no idea how bad it can be.
I have had no choice but to hide my symptoms. Most of the people at work don't even know I am sick. They know that I was going home early for a while and didn't really know why. They know I will really look awful from time to time, but I think they just think it is stress from work. Only my key people at work know. I can't afford to have my employees be concerned about their jobs thinking something bad will happen to the company if I am really sick. It doesn't make any of this any easier.
The strangest thing happened yesterday. I think I had an almost NORMAL day!!!!!! Yeah, I couldn't believe it either. I was driving to work and realized my feet didn't tingle and then I realized I wasn't dizzy at all! I honestly can't remember a day that I didn't have either of those. Plus on top of that the fog was clearing in my head. I had really forgotten what Normal was. Today is not as good as yesterday. I had some tingling and very little dizziness but my mind feels nice and clear. I think I could stand the dizziness if I could just finally get rid of the foggy feeling. My main concern was always having problems with my mind, my ability to think. I could probably deal with just about everything else. Not sure what brought on the changes. I just hope they last a little while.
I hope your stress test went well. Are they just monitoring your heart? I know we are both sick of test after test.
I know I just go on and on sometimes but it is just nice to have someone that really knows exactly how I am feeling and the things I am going through. I hate that we are both in this place but I am glad that you are there to chat with.
Talk to you soon........Ronda
I am real curious how the appointment is going to go tomorrow. It will probably constist of me going on for about 15 minutes trying to explain all of the crazy symptoms I have had for the last year (as of May) and the doctor looking totally puzzled, he'll do a quick check in my ears and say "Looks like everything is normal." By the way the other doctor prescribed Xanax 0.25mg he said it was a very low dose. Do you know if that is low or not? Haven't started taking it yet. I only try new meds on the weekend when I know I won't have to go anywhere or do anything for work. I am a light weight when it comes to medication. I will have every possible side effect a drug can cause. By the way have you been to an ENT before? Have they checked your inner ear? I think you had told me they had.
Yes, I almost always have a hard time sleeping. I can easily go to sleep but wake up several times during the night. I am not sure why I wake up, it just seems to be because I am unable to get comfortable. I get so tangled up sometimes its not funny because I toss and turn so much. I understand the internal tremors. I have that alot. You kind of feel like you are shaking all over just on the inside. I also understand the Foggy feeling. Unless you experience it you really have no idea how bad it can be.
I have had no choice but to hide my symptoms. Most of the people at work don't even know I am sick. They know that I was going home early for a while and didn't really know why. They know I will really look awful from time to time, but I think they just think it is stress from work. Only my key people at work know. I can't afford to have my employees be concerned about their jobs thinking something bad will happen to the company if I am really sick. It doesn't make any of this any easier.
The strangest thing happened yesterday. I think I had an almost NORMAL day!!!!!! Yeah, I couldn't believe it either. I was driving to work and realized my feet didn't tingle and then I realized I wasn't dizzy at all! I honestly can't remember a day that I didn't have either of those. Plus on top of that the fog was clearing in my head. I had really forgotten what Normal was. Today is not as good as yesterday. I had some tingling and very little dizziness but my mind feels nice and clear. I think I could stand the dizziness if I could just finally get rid of the foggy feeling. My main concern was always having problems with my mind, my ability to think. I could probably deal with just about everything else. Not sure what brought on the changes. I just hope they last a little while.
I hope your stress test went well. Are they just monitoring your heart? I know we are both sick of test after test.
I know I just go on and on sometimes but it is just nice to have someone that really knows exactly how I am feeling and the things I am going through. I hate that we are both in this place but I am glad that you are there to chat with.
Talk to you soon........Ronda
blueslvr53
04-21-2005, 12:14 AM
Ronda,
Yea! A good day for you. Glad to hear it, hope it keeps up! I really admire you for feeling so lousy and keeping it all together for your company. You deserve alot of credit.
That is a low dose of Xanax. That is what I take when needed. I only take it when I get those internal tremors and I feel like I am going to jump out of my skin or if I know I really need to get a good night sleep. It might make you tired but you can still function ok. You might even start out taking half of pill. When I first got sick they were giving it to me every 6 hrs which is way too much. I never felt "out of it " so that was good. Just took the edge off. But like I said before it is a drug that can become addicting.
Havent been to an ENT yet. That is about the only specialist I havent seen lol. My stress test is tomorrow. I am not looking forward to it. I had one about 2 years ago and they are not fun. When I was in the hospital in Oct they did an echo and saw something a little abnormal. The doctors put any further testing off until they knew what we were dealing with all the other stuff going on.... Little did I know that we still wouldnt know 6 months later! I have been having some tingling on the left side of my chest, dont know if its just the regular tingling thing or it is heart related, hence....the stress test.
Have you had any of those intense zaps lately. Mine have seemed to settle down. Thank goodness. Have you had a CT of your sinuses? Dont ever feel bad about rambling on, these boards are the best therapy going! Well I hope your days just get better and better..........Ill talk to you soon..............Deb
Yea! A good day for you. Glad to hear it, hope it keeps up! I really admire you for feeling so lousy and keeping it all together for your company. You deserve alot of credit.
That is a low dose of Xanax. That is what I take when needed. I only take it when I get those internal tremors and I feel like I am going to jump out of my skin or if I know I really need to get a good night sleep. It might make you tired but you can still function ok. You might even start out taking half of pill. When I first got sick they were giving it to me every 6 hrs which is way too much. I never felt "out of it " so that was good. Just took the edge off. But like I said before it is a drug that can become addicting.
Havent been to an ENT yet. That is about the only specialist I havent seen lol. My stress test is tomorrow. I am not looking forward to it. I had one about 2 years ago and they are not fun. When I was in the hospital in Oct they did an echo and saw something a little abnormal. The doctors put any further testing off until they knew what we were dealing with all the other stuff going on.... Little did I know that we still wouldnt know 6 months later! I have been having some tingling on the left side of my chest, dont know if its just the regular tingling thing or it is heart related, hence....the stress test.
Have you had any of those intense zaps lately. Mine have seemed to settle down. Thank goodness. Have you had a CT of your sinuses? Dont ever feel bad about rambling on, these boards are the best therapy going! Well I hope your days just get better and better..........Ill talk to you soon..............Deb
tooobuzi
04-23-2005, 09:14 AM
Good morning Deb,
Hope the stress test went well.
The other day I went to an Otologist. It took me two months to get in to see him and then after 5 minutes in the room with him he was sending me off for testing. The exam constisted of looking up my nose, in my ears and mouth and feeling my neck. He is sending me for a balance test. I guess it lasts about 1 1/2 hours. I have no idea what they will be doing. I can't wear any make-up or lotions, can't take any meds 2 days prior and can't eat 4 hours prior. All I know is that it doesn't hurt but they strongly recommend you have someone there to drive you home.
You know I left that appointment thinking about how I just feel I am just going through the motions at this point. I go to these appointments knowing full well they are going to say "Normal" your are just too anxious! But I just can't give up. I am just very grateful that I am able to make my own schedule at work or I would be in big trouble.
The big lotto around here is like 205 million. We were all talking about what we would do with the money. Of course one of the things on my list was taking a trip to John Hopkins, laying down a pile of money and saying "FIX ME!!" :-)
I am trying the Xanax today. I hope I feel some sort of positive change. I guess we will see. Oh yeah, that .25 mg dose I thought was once a day. It is not, it is .25 three times a day. Is that still low? I hear that it is something that is out of your system quickly. Do you know if that is true? Not like some of these meds that have to build up in your system before they start to work. Should I see improvement right away if it is going to work?
My zaps have also slowed down alot. At night I snuggle up on the sofa with a blanket. I can tell I am getting too warm when I start to get the zaps. I take the blanket off and they go away. What is that? Oh yeah and we have had some pretty warm days here lately. I am noticing I am doing really horribly in the heat, even for short periods of time. I get spots in my vision like I could black out and dizzy.
Gonna run, looking forward to some time with my sons this weekend. You know when they get older they don't want to hang out with you as much. They actually want to do that today so I am really looking forward to our day.
Have an awesome weekend! Ronda
Hope the stress test went well.
The other day I went to an Otologist. It took me two months to get in to see him and then after 5 minutes in the room with him he was sending me off for testing. The exam constisted of looking up my nose, in my ears and mouth and feeling my neck. He is sending me for a balance test. I guess it lasts about 1 1/2 hours. I have no idea what they will be doing. I can't wear any make-up or lotions, can't take any meds 2 days prior and can't eat 4 hours prior. All I know is that it doesn't hurt but they strongly recommend you have someone there to drive you home.
You know I left that appointment thinking about how I just feel I am just going through the motions at this point. I go to these appointments knowing full well they are going to say "Normal" your are just too anxious! But I just can't give up. I am just very grateful that I am able to make my own schedule at work or I would be in big trouble.
The big lotto around here is like 205 million. We were all talking about what we would do with the money. Of course one of the things on my list was taking a trip to John Hopkins, laying down a pile of money and saying "FIX ME!!" :-)
I am trying the Xanax today. I hope I feel some sort of positive change. I guess we will see. Oh yeah, that .25 mg dose I thought was once a day. It is not, it is .25 three times a day. Is that still low? I hear that it is something that is out of your system quickly. Do you know if that is true? Not like some of these meds that have to build up in your system before they start to work. Should I see improvement right away if it is going to work?
My zaps have also slowed down alot. At night I snuggle up on the sofa with a blanket. I can tell I am getting too warm when I start to get the zaps. I take the blanket off and they go away. What is that? Oh yeah and we have had some pretty warm days here lately. I am noticing I am doing really horribly in the heat, even for short periods of time. I get spots in my vision like I could black out and dizzy.
Gonna run, looking forward to some time with my sons this weekend. You know when they get older they don't want to hang out with you as much. They actually want to do that today so I am really looking forward to our day.
Have an awesome weekend! Ronda