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Alisha,
I know exactly what you are going through and I have had Arachnoiditis since 1976 and it wasn't diagnoised until 1982 and I wasn't told until 1990. I was so releived to get a name for my condition after all the Surgery and eerything else but it wasn't even in the medical books then. Even now it is still not a known condition and when I am admitted to Hospital for other health conditions that I have problems with what they do now is admit they do not know about it but do respect me and deal with the problem I have been admitted for and let me deal with the Arachnoiditis problems. When I was in Hospital in March I was told it is being taken off the computer there as there are not enough patients in this area with the complaint.
So trust me I do know what it is like to feel alone in the world of pain and disability. I found the worst part was the waiting for a diagnoisis and then as I say in my case frustrating
as I couldn't find out much about it for some time.
I hope you will be able to adjust your life around it and that is by no means easy.
Take care and all the best for the future not that it can ever be really good or as we would have wanted it to be.
Patricia
Alisha Lennin <alishalennin@...> wrote:
Alisha Lennin <alishalennin@...> wrote:
Thank you for the advice Trish!It seems that everytime I've told someone that I have Arachnoiditis, they respond with something like "Does that mean you're allergic to spiders???" ... Nobody has even heard of it! .... Which is why it was so hard for me to finally find out what was wrong with me... The first time I went to the ER was about a year ago.... I had a little lump on my spine (arachnoid cyst), and the whole ride side of my body became numb, and I had unbearble pain.... And the idiot doctor in the ER said that the lump was an in-grown hair, or a pimple, and I should go home.... Maybe it wouldn't have gotten this bad if he had taken the time to examine me back then... But there's nothing that can fix it now... So we just have to bear it I guess.... It's nice to know that there are people out there who believe me when I say that I didn't make up this disease off the top of my head.... Thanks again!
Patricia Brueining <patricia_bruening@yahoo.com> wrote:Hi alisha...My name is Trish and i also suffer with arachnoiditis and go to a pain clinic for treatment...I had 3 back surgerys due to a tumor on my spine and also in the thy sac. I have suffered with arachnoitis for about 2 years and right know i am what i would call stable. I dont know what treatment you are on but i take morphine and tramodlol. I also take nurotin and cymbalta which is also used for nerve pain in my legs. When i relised that i really cant do what i use to do and stoped trying alot of the pain went away. It seems like for me that it will come and i will suffer alot for a number of months and then it will stop and then return again. Right know it has been a good six months, I still take my medicine but i also take it really easy. I understand that it is hard with little ones, but if i was you if you dont have a pain specialist i would look into getting one and then ask them if they ever heard of it . If not educate them on it buy down loading stuff off the computer and sending it to them. l live in lower Michigan, about an hour out of Detroit so i can get to good doctors and that means alot. Please email me back and tell me about ur se.....you are not alone here even though it feels like it. god blessTrish
alishalennin <alishalennin@yahoo.com> wrote:Hello,
My name's Alisha... I'm 20 years old, and was diagnosed with
Arachnoiditis just a few days ago. It was the result of an epidural
with several complications. It's quite difficult for me to chase
around my 2 year old, and get any work done. The pain and numbness are
becoming progressively worse. In my past experiences, I've learned to
not trust everything a doctor advises.... I was looking for advice,
and feedback from people who have experienced treatment for this
disorder. Thanks...
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