Hello all!! I have really missed everyone and apologize to those of you that have personally called or emailed and I have not answered It has been a really, really rough month and a half for me. I will explain:
I knew that I had been having some very odd symptoms besides my normal Sjogren's, Fibro, and Neck & Back Pain symptoms. I have been having periods where I am not able to write or type and when I do it is gibberish but does not look that way to me at the time. I have had periods of severe short term memory loss where I don't have a clue what I was talking about, doing, had been doing, why I was where I was, etc. I also have had several days where my legs did not feel as if they could support my weight and somedays actually could not. I knew these symptoms did not go along with typical Sjogren's type symptoms, so I began to investigate as to what it might be. I don't really remember who suggested I look at a site on "Arachnoiditis". While looking there, it was like every word was written to me and about me. I then found a site called COFWA which stands for "Circle of Friends with Arachnoiditis" and got the answers to many questions that I had. I kept researching and found someone who really wanted to help me, called and discussed the illness with me, and suggested a wonderful doctor to try and get an appointment with.
Arachnoitditis is a rare spinal disease and there are only 2 doctors in the US that you can see for it and one clinic - The Cleveland Clinic in Cincinnati, Ohio. Luckily, I was able to get an appointment with an expert in this and after spending over 7 hours with this doctor, I was diagnosed with this disease. I guess you are wondering why I am putting all this information on a Sjogren's site. To me, this is the most interesting information that I found about my new disease.
Arachnoiditis patients routinely develop Sjogren's, Fibromyalgia, and other Autoimmune Diseases as a result of having the Arachnoiditis. They are directly linked together and if you develop Arach, then your likelihood of developing Sjogren's, etc. increases 100%. I found this very interesting for Sjogren's patients.
If any of you, like me, have severe neck or back pain, along with your Sjogren's, you may want to investigate the disease, Arachnoiditis. There is no cure for it at this time, so my prognosis is not a good one. Paralysis is often a result of the Cervical Arach that I have, along with loss of bladder and bowel control; horrible, intractable pain that cannot be controlled; and various other life-changing symptoms.
Right now, I am just trying to learn to deal with this new disease, along with my Sjogren's and other diseases. Please check this disease out for yourself if you have any of the symptoms that I have talked about. One great site that I have found is www.theaword.org. I am not sure if we are supposed to put other sites on here, but I thought that it might help a lot of people if they could go here and read more about this disease.
I need to go, I tire very easily and I am at that point now. I hope to be able to visit a lot more than I have been visiting lately. If anyone has any questions, or wants to email me personally about this, I do not mind. My email address is bargainmom08@live.com. I wouldn't mind trying to answer anyone's questions, even though I guarantee you that I do not have all the answers. Take care all and I hope to talk with you soon.
Hi mompain,
Im so sorry to hear that you have had such a rough time. I hope they will be able to do something for you.
I have missed you around. i know you werent well last time we spoke in chat. Im glad you are back with us. visit when u can and keep us posted. i will send up some prayers for you
Pud
Mompain,
I'm sending my prayers too. It is a mixed blessing to be diagnosed with some of this stuff. You finally know what it is.......and you finally KNOW what to expect.
My dear, I hope this specialist can help you and I am praying for a cure to be found for you!
Janna
Aww Mompain, we knew you weren't feeling well, but we had no idea it was this severe. I'm so glad you found someone to help you find a doctor that knows what is going on. Good luck and please keep in touch with us.
We were talking about you at staff meeting last Monday wondering how you were doing. We all miss you not only here on the forum, but in chat also.
Take care and please let us know how you are doing.
Hugs, Pooh
Hi mompain,
I'm so sorry that you're feeling so lousy! Wow, you have a tiger by the tail, but I'm sure glad that your doctors have a diagnosis finally! I do believe that that's half the battle anymore; by the way, did the doctors say how many people they think might suffer from this in the world?
Thanks for the information, as I'm sure that it will be helpful for some of our members!
I'm glad to see that you're back, and I do hope to see you in the chat room soon!
Take care and keep us updated!
Patze
Hi mompain....
I'm so sorry to hear that you have been feeling so badly and for all that you have been through....but I am glad that you have found a good doctor who knows about this and can hopefully help you through this. We have missed you...and like Pooh said...we knew you weren't well, but had no idea that it was something this severe on top of everything else you are dealing with!
My positive thoughts and prayers are being sent out to you! Please check in and let us know how you re doing when you feel up to it!
((((((((((((mompain))))))))))) (http://www.freesmileys.org/emoticons/emoticon-object-080.gif) (http://www.freesmileys.org)
Hi Mompain :)
I'm truly sorry about what you're having to face up to right now. I think it's great that you've researched, found a doctor and a network of people to help you through this. We're all still here to help you through the SjS bit!
I'm sure that as a result of taking control in the way you have you'll deal with the situation better than otherwise. I hope they can find some way of controlling the pain.
Take care - Scottie :)
Thanks to all of you who have sent good wishes my way. I am having a very hard time dealing with being diagnosed with this illness. I have been very depressed at times and able to handle it pretty well at other times. I definitely need all the thoughts and prayers that you can offer.
My family is also having a hard time dealing with things. The thing that is the hardest is knowing that any fall, slight accident, or other jarring to my neck could cause instant paralysis. I know God is not going to give me more than I can handle, but that truly terrorizes me. I think I could handle having leg paralysis, but from the neck down is so scary. I want to be able to hold my grandchildren (that I hope to have) and am doing everything within my power to take care of myself so that I will be able to do that.
I have been very emotional, crying on minute and laughing the next, but I think that is typical. I mostly need to know that people care and that I am not alone when I am so scared. Thank you all for letting me know that. I know that my friends on this site truly do care and that I can turn to you for help and a listening ear. As I said, when I am alone, I tend to get more afraid and more depressed about things. BUT . .. I am going to make it and I am going to be okay with God's help and that of my wonderful friends.
Take care and I hope all of you are well. I apologize for being so wrapped up in me that I haven't asked about you. I think of you often. I wish you as painfree of a night that you can have.
mompain, You sure did get sucker punched with this diagnosis. So totally not what you would expect. It is good though that you were able to see the specialist and it is amazing how he spent so much time with you. I am curious as to whether you need to wear a neck brace to provent you neck from any sudden movement.
I will most certainly keep you in my prayers. And yes, you can laugh and cry and scream if you want as it is what any of us would do. I am glad that you have kids also that can help you iwhen needed. Hugs Irish ;D