Hi, I am new here also, but not new to Tarlov Cyst. I was diagnosed with mine about 10years ago. My symtoms were very familiar to yours. I had been to 3 Orthoaepedic Doctors and they all said I had degerative disc problems that were causig my pain in my legs and lower back. At that time it was mostly in my back but I had tingling in both my feet my left being worse. Then one day I had the strangest feeling in my rectum area, it felt to me like water was running down my lower back into my rectum. I immediately went in to the doctor and told him my systoms. This was a fairly young surgeon and as soon as I mentioned my problem he said I want you to have an xray right away. As soon as the xray was over he looked at it and said I think I know whats wrong with you but I want a special MrI done of your sacrum area just to rule out a tumor. I had the xray done and sure enough he said it was a tarlov cyst, that he had studied about in med school, but he still wasn't sure it was causing my symtoms because of my other back problems.
I search on line and found a board back then and learned all about tarlov's and I am sure that was and is my problem, but general doctors won't consider it because they don't know enough about them. There are only a small amount of dotors in the world that will treat them and none are in Florida where I live.
My cyst goes in and out of being sytomatic and I have had some relief for years but it seems to be getting worse now. Both my legs from my feet to just about 1/2 way to my knee are numb and tingling all the time. The right one has only been this way for one year. Now my thighs are very painful when I do any type of walking, this has come and gone for the last year. My doctor has been treating me for high cholesertol and was thinking it was the meds causing my problem so I have been adjusting them but my legs still hurt and when I have a muscle test done it comes back normal.
I finally decided to handle this myself because prior experience has told me doctors don't believ it's the tarlov causing the problem.
I can tell you that the last time I was extrememly symtomatic I tried a PH diet and after a while it seemed to ease my systoms. It seem that when I go off the diet the symptoms come back but they always seem worse when they return. My legs are just about usleless always hurting and holding me back from doing anything. My back hurts but I'm not sure if I have just got use to that pain or that the legs are so bad I don't notice it as much.
I joined here today in hopes of finding others who are experiencing the same things and have suggestions on what has helped them. Your message was the first one I saw and just wanted you to know you are not alone. I know this has gone on too long for me and I really have to start searching for a doctor who will actually be able to understand and help me. I fully understand how you feel and hopefully together we can gather some information that might help us both. One thing about being here you are not alone and that is such a good feeling since I live with this and no one who doesn't have it truly understands. Here's hopig we both get better. Katt17