Janet - Reply #2

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Janet,

Small World!!! I live about 20 miles north of Bloomington/Normal in El Paso, IL. Yes, there actually is another El Paso outside of Texas! I actually work at ISU....been off work for almost a full year now due to this, but look forward to eventually getting back there.

I am very familiar with the area in which you live. My mom and dad are from that neck of the woods. I still have some family down that way. Benton to be more precise. Hate to say that I don't get down there much...sadly to say only when we lose a family member, and even more sad is...there isn't many left!

Shame that you aren't still up in this area...I feel as though I have the BEST doctor! I actually stopped in to see him today after I got my staples out in the neurosurgeons office and told him that he is my savior! I don't know what I would do without him....I can't wait till he gets a chance to see the real me...the person that I am when I am not in all this pain. He got a few smiles out of me today, but he will be completely amazed when he sees me next time.

Do whatever it takes to find the right doctor for you...that is the most important thing with this monster...a good doctor that knows what he is doing!

I look forward to hearing more about you!

Teri

-- Re: RSD and MS

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

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