Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Dawn, Yes I am having the MRI to rule out or in MS. I refused to have a spinal tap because I had one 3 yrs ago and ended up with a leak..and at that time the drs I had were useless. I called to say I couldn't get out of bed without throwing up and my head was splitting....they told me to wait it out. I waited it out for a week and then finally went to see a neurosurgeon and he told me I had a spinal leak and sent me to have a blood patch done...I just don't want to go through that again. I don't think I have any symptoms of MS personally...but the dr feels the numbess and tingling in my cheek and jaw...even though I have the burning pain there too could be the start of MS. Since MS is an autoimune disease..and i have gotten more then my share of those...he just wants to make sure I think. I guess I don't mind him checking out any possible thing then not checking it out. I know nothing about MS...I used to go look up any disease I was being tested for...but I have found out over the years to just look up things I know I have. I will let you know the results of the MRIs..as soon as I know. I know how hard it is to deal with several diseases going on at once....but every disease hits each person so differently...no one can say they know exactly how you are feeling. I am keeping you in my thoughts and prayers...Ginny__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Good luck on Friday, Ginny. I have a couple of friends that have MS. I do know that it took each of them quite a while to be diagnosed. I know that they look at whether the amount of white matter changes...either in size or in the number of places that it shows up. That's about all that I know. Best of luck and I will be thinking about oyu. BarbaraGinny Barrientos wrote: Dawn, Thank you for your response to this...as I said before I know nothing about MS. Don't ever feel like you are being nosy or butting in...I really appreciate the information. I am sure Janet will find it very useful also. Please keep me in your thoughts Fri when I go for my MRI...I am hoping it will just rule out MS not the opposite. I will let you know the results as soon I know....Hugs...Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Dawn: Hi! Sorry to hear that you have MS. I went to see a Neurologist in Springfield, Ill about the MS diagnose and he told me that a Spinal Tap that comes back milky and not clear is a sign that it is MS. Mine was clear like water, I was told that I didn't have it, so I don't know what to think. I have been wondering for sometime now, did you have any symptoms that made the doctor wonder if you had the MS or not. Do you drive? and if yes, do you ever feel like you don't know where you are at times, somtimes this happens to me, and it scary!!! I could be driving and all of sudden think to myself where am I. It does make me scared to drive at times. I wonder if this is the white matter that causes this to happen. Did you say that you have RSD and Fibro? I do and believe me they are no fun, my body hurts so bad all the time. The RSD is burning my skin, it's on fire all the time, and then I SWEAT like crazy!!!! It's really weird, but I will look up the website on MS, thanks! I am glad that I posted, I don't know many people around here that have these diseases. It' gets lonely being around myself, with noone to talk to about it. I have kids and they are what has made me get through all of this. But I don't have many friends, I lost alot of mine due to my sickness, it's not fair!!! I didn't ask to be sick, I was working like everyone else, and now I am on SSDI for good now. I am 42 years old, somedays I really feel lost!!! Thanks for being there for me, I appreciate it very much!! Janetdawn lorenz wrote: Janet, I did not get to read your message, but if it is thought by your doctors that you have MS, then white matter is what happens to your brain from damaged caused to mylein sheath. Have you been diagnosed with MS yet? The white matter is what they look for on the MRI to determine if you have MS. The more white matter that shows up the longer you have had it. Once you start getting treated with injections of beta interferon(there are many different meds that you can take, unfortunately they are all injections) it will start putting your MS in a remission! It does not cure the disease but you could go your entire life without having another attack. I cannot take full injections, because I have a bad reaction to the medication, but recently started half injections and will increase in time when my body starts to adjust. If you want to go to a GREAT website for MS, please go to MS Active Source, or Avonex.com that is the medication that I take. It is the most common and 80% of people that take MS meds use this! I believe that there are four or five others that you can also take. I hope that I was not being to nosey and butting in where I do not belong. I just know what it is like to be dealing with both of these monsters!!! If you would like to talk with me, I would be glad to. My private email is ddottidew@.... You may also email me here at the group if you would like to. Please take care and do not worry to much, because I thought it was a death sentence at first and relized that I can live a very normal life, with the exception of being more tired than most people. I was diagnosed Feb. 15 of this year and I am now giving myself injections every Monday evening at 8pm. My dog Holly loves for some reason to sit and watch me. Sometimes I am laughing so hard holding the needle, I think I am going to stab myself in the wrong place. Trust me when I tell you it is all about mind over matter!!! It does not hurt one bit!!!! That is the Gods honest truth. I do not like to use his name that way. Sorry!!! I hope that I have helped you some, and I wish you the very best!!! Take Care and LOL! DawnGinny Barrientos wrote: Janet, I have no clue what the white matter is that showed up on your MRI. My son has had several MRI of the head...he is autistic...and every time something else showed up...sometimes I think it is just interference...or the technichian's error that causes something to show up and never shows up again. He had another MRI just this year and the only thing that showed up was the grey area that is seen in most people with autism. Good luck with everything I know how hard it is dealing with several medical disorders at the same time....Ginny __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 -------Original Message------- Do you drive? and if yes, do you ever feel like you don't know where you are at times, somtimes this happens to me, and it scary!!! I could be driving and all of sudden think to myself where am I. It does make me scared to drive at times. I wonder if this is the white matter that causes this to happen. ================================================== MS isn't the only thing that can cause this to happen.... Neurontin can cause you to forget where you are going....It happens to elderly people quite a bit that are taking it... But, I've noticed that it happens to me quite often, whether it's from the RSD, or the Fibro I'm not sure....but it's from one of them. I'm not on Neurontin, but When I was for 3 months, I know that it was even worse... Tonia ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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