w0rldflame
07-14-2007, 02:37 PM
well, I just wanted to know from anyone else if besides MS or Lyme Disease if there was anything else that would cause all of my symptoms to get worse in the heat.
I went to my mother-in-laws for a wedding and everytime I tried to walk, my legs and lower back felt like lead or like I had 50 pound weights attached to them. I had to take a cold shower to cool down and once I did that most of the symptoms dissappeared until I got into the heat again.
I ask because I saw my doctor and told her about the other doctor I ran into and what test they suggested just to eliminate any other things like lyme, I played dumb saying I didnt know what the tests were for. she seemed very upset and told me to just let the neuro do what he is doing, although he is the one who thinks I am crazy.
maybe I am, at this point I just dont know anymore, but I know this is not all in my head. I told her what the neuro said about fibro not being real and she said some dont think it is and then she said maybe it wasnt fibro after all, like she was sticking with him argggggggggggghhhhhhh.
anyway I just wanted to know about the heat thing, and I couldnt get her to run any further tests, I realized when she started asking me the same questions and I gave her the same answers that she said I didnt give, I realized she never listened to me in the first place.
I have listed my symptoms in previous posts, but they keep telling me that my symptoms are all over the place and dont focus on one disease because well MS wouldnt be all over the place.
thanks
I went to my mother-in-laws for a wedding and everytime I tried to walk, my legs and lower back felt like lead or like I had 50 pound weights attached to them. I had to take a cold shower to cool down and once I did that most of the symptoms dissappeared until I got into the heat again.
I ask because I saw my doctor and told her about the other doctor I ran into and what test they suggested just to eliminate any other things like lyme, I played dumb saying I didnt know what the tests were for. she seemed very upset and told me to just let the neuro do what he is doing, although he is the one who thinks I am crazy.
maybe I am, at this point I just dont know anymore, but I know this is not all in my head. I told her what the neuro said about fibro not being real and she said some dont think it is and then she said maybe it wasnt fibro after all, like she was sticking with him argggggggggggghhhhhhh.
anyway I just wanted to know about the heat thing, and I couldnt get her to run any further tests, I realized when she started asking me the same questions and I gave her the same answers that she said I didnt give, I realized she never listened to me in the first place.
I have listed my symptoms in previous posts, but they keep telling me that my symptoms are all over the place and dont focus on one disease because well MS wouldnt be all over the place.
thanks
Sponsor
MSNik
07-15-2007, 11:07 AM
Please dont be offended, but stress could make your symtpoms do what you are going thru. You ARE so all over the place, that no doctor is going to really be able to follow you at this point. I do, and I am quite sure many others understand why you are feeling like you do, becasue we have been there...however, im going to give you a little piece of advice.
STOP READING ABOUT SYMTPOMS and STOP RESEARCHING DISEASES.
You are doing this to yourself at this point. ...and , it is understandable. Please do not think I am not NOT being sympathetic, because I am. I truly TRULY am.
But, for you to really understand what is going on with you, you need to understand that it takes more than symptoms to get a MS dx or any other dx...there are tests which must be run, other things which must be ruled out and criteria to be met. Youre not meeting it now, but you will meet it at some point, its not uncommon to have it take years to get to that point. If you are that unhappy with your doctors, start over. Get new ones...take all your previous tests to someone else to re-evaluate and start from scratch....
Lyme doesnt cause heat problems by the way. My husband has had lyme for years, and works outside in 100 temps all summer long...hes fine. MS is exactly what you described...when the core temp of the body overheats, the myelin is affected...as soon as you cool it down, you start to feel better, although a cold shower is a good place to start, depending on how hot you really were, it can take a few days for things to compeltely reverse. In the meantime, common sense and medical sense say stay out of the heat entirely until you are 100%.
You are so stressed and I can hear it in your posts...please take two steps backwards. Try to relax...try NOT to think about this...stay off the internet if thats what it takes...but honetsly, you need new doctors...youre arent helping you, there is no communication between you and there is no trust on your end...(meaning you dont trust them). You need someone to talk to, who can help you...but mostly, you need to relax and remember that this isnt going to go away- so finding out tomorrow, or finding out in a month, isnt going to make a difference...how you handle it, will make all the difference in the world.
Good luck....try to stay cool and have a good weekend.
N
STOP READING ABOUT SYMTPOMS and STOP RESEARCHING DISEASES.
You are doing this to yourself at this point. ...and , it is understandable. Please do not think I am not NOT being sympathetic, because I am. I truly TRULY am.
But, for you to really understand what is going on with you, you need to understand that it takes more than symptoms to get a MS dx or any other dx...there are tests which must be run, other things which must be ruled out and criteria to be met. Youre not meeting it now, but you will meet it at some point, its not uncommon to have it take years to get to that point. If you are that unhappy with your doctors, start over. Get new ones...take all your previous tests to someone else to re-evaluate and start from scratch....
Lyme doesnt cause heat problems by the way. My husband has had lyme for years, and works outside in 100 temps all summer long...hes fine. MS is exactly what you described...when the core temp of the body overheats, the myelin is affected...as soon as you cool it down, you start to feel better, although a cold shower is a good place to start, depending on how hot you really were, it can take a few days for things to compeltely reverse. In the meantime, common sense and medical sense say stay out of the heat entirely until you are 100%.
You are so stressed and I can hear it in your posts...please take two steps backwards. Try to relax...try NOT to think about this...stay off the internet if thats what it takes...but honetsly, you need new doctors...youre arent helping you, there is no communication between you and there is no trust on your end...(meaning you dont trust them). You need someone to talk to, who can help you...but mostly, you need to relax and remember that this isnt going to go away- so finding out tomorrow, or finding out in a month, isnt going to make a difference...how you handle it, will make all the difference in the world.
Good luck....try to stay cool and have a good weekend.
N
w0rldflame
07-15-2007, 01:41 PM
thanks Nik.. just a side note, I wasnt researching anything on the internet until about 8 months of this stuff with the doctors and not being able to figure it out.. I started researching and talking to some people, I appreciate your post. I know at this moment I am stressing over all this and the hardest part is not knowing. I know it has only gotten worse over the last year wiether or not I have been stressed, but I am taking steps back and going to concentrate on eating right and trying to take better care of myself and just live the best possiable way I can and if something happens it happens, if it doesnt thats ok to, but I cant spend my whole life waiting for something to happen and I cant take the few hours I have with my family to spend at the doctors.
I appreciate your candor.
the Nuero said only possiable MS with the spinal tap and he said there is no treatment for possiable MS.. ( if he did the spinal tap is what he said )
w0rldflame
I appreciate your candor.
the Nuero said only possiable MS with the spinal tap and he said there is no treatment for possiable MS.. ( if he did the spinal tap is what he said )
w0rldflame
MSNik
07-15-2007, 07:24 PM
HI world flame,
well you sound calmer now then you did when you wrote that other post...good for you!
Yup, most docs wont say that there is a treatment for "possible MS", but most MS SPecialists will not ever say Possible MS...they USUSALLY go with it is, or it isnt..are you seeing an MS doctor, or a regular Neuro? Cant remember. If you arent seeing a MS Specialist, maybe now is the time to figure this out...I mean, u could get the Spinal Tap, see if your doc changes his tune...or you could get it and take the MRI results along with the Lumbar Puncture (spinal tap) to another doc to get a second opinion...either one would be justified.
Most MS docs are under the assumption that starting MS Therapy drugs are the best thing in the world to do, as soon as possible....they wont hurt you, thats for sure..as long as you can tolerate them..and if you cant tolerate one, youll tolerate another...somtimes it takes time to get on the right drug..but doing nothing is not the answer for them to give you...
You are right to NOT predict somthing whihc hasnt happened yet..but you are also right to be concerned that he isnt doing everything to find out what is wrong..
I think, if I were you, Id push for all the tests, and take them to another doctor for another opnion..
I will send you positive thoughts..ok?
Hugs,
Nikki
well you sound calmer now then you did when you wrote that other post...good for you!
Yup, most docs wont say that there is a treatment for "possible MS", but most MS SPecialists will not ever say Possible MS...they USUSALLY go with it is, or it isnt..are you seeing an MS doctor, or a regular Neuro? Cant remember. If you arent seeing a MS Specialist, maybe now is the time to figure this out...I mean, u could get the Spinal Tap, see if your doc changes his tune...or you could get it and take the MRI results along with the Lumbar Puncture (spinal tap) to another doc to get a second opinion...either one would be justified.
Most MS docs are under the assumption that starting MS Therapy drugs are the best thing in the world to do, as soon as possible....they wont hurt you, thats for sure..as long as you can tolerate them..and if you cant tolerate one, youll tolerate another...somtimes it takes time to get on the right drug..but doing nothing is not the answer for them to give you...
You are right to NOT predict somthing whihc hasnt happened yet..but you are also right to be concerned that he isnt doing everything to find out what is wrong..
I think, if I were you, Id push for all the tests, and take them to another doctor for another opnion..
I will send you positive thoughts..ok?
Hugs,
Nikki
w0rldflame
07-15-2007, 08:24 PM
Thanks Nik :) positive thoughts are always good..
I have been seeing a regular neuro and have been trying to find an MS specialist but feel silly doing it when the test I have had have come back normal, Especially the MRI of the brain. one of the other doctors told me to ask for the MRI again with contrast on both the brain and the brain stem, but my doctor didnt think it neccassary.
I think I made her mad at our last visit because I was pushing for the spinal tap to rule out anything else and I mentioned nerve damage being a possiablitly if we could test for that. but she told me to let the nuero handle it. so i will talk to him about the "arthritis" that he told me it probably was and ask him if we can test for nerve damage to see if the "arthritis" has caused any damage.
I figure I will have to somehow go with what they think it is when I ask.
I am greatful for everyone who has given advice on this board and for all the care from everyone on this board for everyone on this board. it has helped tremndously in understanding what is going on and if it could all be helped by something else or maybe even something else. it has also helped to know I am not the only one whose doctor is saying to go see a therapist :P
I found an MS society office in a town about 40 minutes north of me, but not one here. I am going to see if they are open on one of my days off and see if I can go talk to them. but first I need to figure out how to catogorize what has been going on so that maybe it doesnt look all over the place on paper, I know when I try to explain everything going on I sound all over the place because I keep forgetting stuff or I dont want to forget anything.
any ideas on excerizes that dont put to much strain on the legs and leg muscle since my legs always seem to be burning or spasming? I know swimming is a great excercise if you have access to a pool, but any other ideas?
thanks
w0rldflame
I have been seeing a regular neuro and have been trying to find an MS specialist but feel silly doing it when the test I have had have come back normal, Especially the MRI of the brain. one of the other doctors told me to ask for the MRI again with contrast on both the brain and the brain stem, but my doctor didnt think it neccassary.
I think I made her mad at our last visit because I was pushing for the spinal tap to rule out anything else and I mentioned nerve damage being a possiablitly if we could test for that. but she told me to let the nuero handle it. so i will talk to him about the "arthritis" that he told me it probably was and ask him if we can test for nerve damage to see if the "arthritis" has caused any damage.
I figure I will have to somehow go with what they think it is when I ask.
I am greatful for everyone who has given advice on this board and for all the care from everyone on this board for everyone on this board. it has helped tremndously in understanding what is going on and if it could all be helped by something else or maybe even something else. it has also helped to know I am not the only one whose doctor is saying to go see a therapist :P
I found an MS society office in a town about 40 minutes north of me, but not one here. I am going to see if they are open on one of my days off and see if I can go talk to them. but first I need to figure out how to catogorize what has been going on so that maybe it doesnt look all over the place on paper, I know when I try to explain everything going on I sound all over the place because I keep forgetting stuff or I dont want to forget anything.
any ideas on excerizes that dont put to much strain on the legs and leg muscle since my legs always seem to be burning or spasming? I know swimming is a great excercise if you have access to a pool, but any other ideas?
thanks
w0rldflame
MSNik
07-15-2007, 08:58 PM
Actually, I can help with that one too...the exercise question.
Balance Ball. Do you know what it is? They use them in videos, which you can purchase or you can get one at any sporting goods store. Ive even seen them in places like Borders Books, in the exercise area...
What it does, is while you are sitting on the ball, you are putting the balance on your feet, but using your upper body, or core strength to keep sitting on it. You can do exercises like pointing and flexing while keeping one foot on the ground, which helps to strengthen and lengthen the leg muscles, without really putting stress on them...you can also use the ball for sit-ups, push-ups and dumbell exercises for your arms. I do videos which I purchased, which are 25 minutes long about 3 times a week. I have a Gazelle also....kind of like a stepper/elipicial machine. My balance is really bad, and with this machine,I try to do a mile (which takes me about 10 minutes) at least 3 times a week too. It helps tighten and tone, without putting any stress on the knees or legs- my biggest issue is holding on...the minute I try to let up on my grip on the handle bars, I get dizzy! Howver, the more I use it, the better I get..and honestly, its alot faster and easier than walking...because it is a gliding motion, its not hard on the body...
Your ideas on the doctors are good ones..do try to get to that center you mentioned, it cant hurt. As far as making a doctor mad, they get that way sometimes...you have to word your suggestions very carefully and NOT make it sound like you are getting advice from anyone or the internet...remember, they take great pride in the 8+ years they went to school....if they feel insulted, you get the brunt of it..and its easy to do, doctors are so touchy! LOL. I really think yu should try to get all the tests you can...making an appt with an MS specialist is the very best way to go...because they see SOO many MS cases, and have heard it all- they are qualified to rule out or treat MS...my MS specialist is sooo great, he managed to dx several people with different diseases whom I have become close to...I referred people there becaue they were sooo sure they had MS, and in fact, only One person did. One had Lyme, one had another neurological disease called PMR, its kind of an arthritis type thing, and its chronic, but not life threatening. Keep working on your docs...as long as you keep copies of test results, it cant hurt!
Thanks for everyting tongiht.
Hugs to you..and the positive thoughts are still coming your way.
Nikki
Balance Ball. Do you know what it is? They use them in videos, which you can purchase or you can get one at any sporting goods store. Ive even seen them in places like Borders Books, in the exercise area...
What it does, is while you are sitting on the ball, you are putting the balance on your feet, but using your upper body, or core strength to keep sitting on it. You can do exercises like pointing and flexing while keeping one foot on the ground, which helps to strengthen and lengthen the leg muscles, without really putting stress on them...you can also use the ball for sit-ups, push-ups and dumbell exercises for your arms. I do videos which I purchased, which are 25 minutes long about 3 times a week. I have a Gazelle also....kind of like a stepper/elipicial machine. My balance is really bad, and with this machine,I try to do a mile (which takes me about 10 minutes) at least 3 times a week too. It helps tighten and tone, without putting any stress on the knees or legs- my biggest issue is holding on...the minute I try to let up on my grip on the handle bars, I get dizzy! Howver, the more I use it, the better I get..and honestly, its alot faster and easier than walking...because it is a gliding motion, its not hard on the body...
Your ideas on the doctors are good ones..do try to get to that center you mentioned, it cant hurt. As far as making a doctor mad, they get that way sometimes...you have to word your suggestions very carefully and NOT make it sound like you are getting advice from anyone or the internet...remember, they take great pride in the 8+ years they went to school....if they feel insulted, you get the brunt of it..and its easy to do, doctors are so touchy! LOL. I really think yu should try to get all the tests you can...making an appt with an MS specialist is the very best way to go...because they see SOO many MS cases, and have heard it all- they are qualified to rule out or treat MS...my MS specialist is sooo great, he managed to dx several people with different diseases whom I have become close to...I referred people there becaue they were sooo sure they had MS, and in fact, only One person did. One had Lyme, one had another neurological disease called PMR, its kind of an arthritis type thing, and its chronic, but not life threatening. Keep working on your docs...as long as you keep copies of test results, it cant hurt!
Thanks for everyting tongiht.
Hugs to you..and the positive thoughts are still coming your way.
Nikki