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.
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
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 )
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
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?
positive thoughts are always good.. 
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