My Husband posted the above comment and I am at my wits end,I evan had a Hysterectomy with the thinking it could be slightly related,I had knee surgery where they scoped out the knee.had an attack while recouperating...this is the scariest thing because you do not know when it will hit or how bad it will be.I am trying to get into Yale but now need a referral from the ortho surgeon who last treated me, has anyone ever had help with this or have had a definite diagnoses?
Ricky I had the pain for 2 years before the knee surgery,I do have a herniation in my l4 l5 with no fat around the discs but I never have pain in the buttocks or back when the attacks happen....the attacks come out of no where,the ortho who preformed the knee surgery was trying to help me he wants me at a bigger hospitol where they might have dealt with this before......My husband has found about 50 posts just like mine but I do not see that anyone has come back with an answer but all of the post describe the exact same symptoms as mine????
I have exactly the same problem as you describe . have you had any answers?Thanks Clara
Finally I know I am not alone. I am a 60 yr. old female, 5'2" and 156 pounds. My attacks started in early November. I've had two major attacks since then, with a few small twinges that didn't turn into full blown. I had one major attack last night. There is no pattern to what causes them or what "heals" them. Last night's was probably about 20 seconds, but the pain is so intense that I do cry out and worry that it will never stop. This is controlling my life, causing me to be afraid to do anything or go anywhere unless my husband is with me, although he can do nothing to help. I had a very thorough neurological test about three weeks ago which included the electric shock nerve tests and needle tests. I also had an ultrasound on the same day. Nothing showed anything wrong. Both legs were tested with the neurological tests. They were both just fine. Two days later I had a small attack and last night the major attack. I know this doesn't help you any, except to let you know you are not alone. What your husband posted about you describes me perfectly. I have not had an MRI.
I am sorry you are also going thru this strange thing I wish I had answers for you also..I do know that right now I am in a lessened stage of this ,I have looked into it it and I beleive it is a neroma on the nerve but cannot get help with it,I am planning to see a nerosurgeon if this continues....one suggestion that sounds weird but might be is it could be a strep that has a life cycle and when it is in the multyplying stage or dying out stage it could bring on the attacks.....IDK...I have printed these letters out and have given them to my GP who is also at a loss...its very scary but know the attack does have an end and breathe thru them...I don't end up very often on the floor anymore.I shift around till it subsides I have learned to live with it
Thank you for your encouragement. Have you ever had an attack in a public place where it caused you to "make a scene"? I am now afraid to go to plays, sing in church choir, etc. where I would be disrupting something if I had an attack. I canceled a long trip just this week because of the fear of having an attack while riding in the car with my sister, and because of the fear of having an attack while making arrangements to fly home alone as standby. What if it happened on an airplane, or while waiting to board? I am so discouraged.
Also, I'm wondering if you take Lipitor. I do, but I've been taking it for about four years. I was reading the possible side effects this morning and one of them is tendon problems.
Could you write to me at ***@****? I would like to discuss this in further detail.