Thanks for the additional information. My heart goes out to you. I've been were you are.... without a diagnosis and searching in pain for years for an answer.
It was a D.O. (Doctor of Osteopathy) that finally diagnosed me. This particular D.O. was a female, newer grad that practiced OMT (Osteopathic Manipulation Therapy). I won't bore you with the details of their education but they are able to "feel" things with their hands that other physicians cannot and are not taught to do. Once she "felt" the problem she followed it up with supporting and recognized diagnostic tests. It may be worth your time to locate a D.O. The ones that practice OMT can be difficult to find but they are out there.
You have an impressive list of specialities that you have consulted. I assume you have seen a gastroenterologist and a urologist....second opinions with these specialites may also be beneficial....using the guidelines that I stated in my first response to you.
I wish I had better answers for you. I do know the frustration and pain that comes without a diagnosis. You're not crazy! Stay strong and hand in there. Don't give up. You are welcome here...the support and information gathered here can be very valuable.
I wish you well and hope to you'll keep in touch.
~Tuck
Hi Tuck
Thanks for your interest. Problem really got going in 1990 but has got steadily worse to the point where I have tried a vast variety of pills. The last lot were Morphine. None were of any use and I ended up with all side-effects possible. Muscle relaxing pills were interesting in that I just went to sleep as they affected all muscles.
Have seen Gut Specialists, Neuropathy Specialists, CFS&ME specialists, Rheumatologists and tried alternative medicine--all to no avail. In fact some thought the condition quite funny!!
Had an MIR scan on my back and was told they that could not see nerves anyway. So it appears that I have been declared by all as totally fit but the truth is very different. As soon as I mention bilateral pain that disappears on defecation there is an automatic switch off by people who seem to think it is impossible. But the evidence is obvious and constipation is really bad news.
Do not know which way to turn now as the chances are that I fall between two specialities with a problem caused by referred pain.
Regards Rogery
Hi Rogery,
Welcome.You certainly have interesting symptoms. I am a bit confused so please excuse me. You say they are due to a stomach disorder but have no diagnosis. Is it a physician that has told you that the symptoms are from that disorder and so they have a name for it .... or...have you made that determination?
Have you had an MRI of your spine? Sometimes bowel and bladder ...associated pain can be related to a spinal structure problem. This occurs when nerves are compressed. This may not be the cause at all it's just a thought.
Have you been evaluated at a large teaching facility or well know national clinic? If not you may find that those type of facilities and associated physicians can help greatly in the diagnosis process. They seem to be on the cutting edge of medical science and love a mystery. That's where I would go if no one else has been able to help you.
In the mean time has your PCP ordered a muscle relaxer to help with the spams in your lower extremities? Just another thought that you may want to consider. I hope you'll keep us updated. I'll be interested in hearing the results of your consults. Best of luck to you.
Take Care,
~Tuck