I am online and happy to help you with your question today.
I am sorry to hear that you are having this difficulty for such a long time.
When you get these shocks, other then the pain of the shocks, are there any physical manifestations?
Other then the UC, do you have any medical problems or take any medication?
Nothing else besides my doctor told me several years ago I have ulcers. I don't take any meds
As you stated, the problem is that is happens so infrequently and there are no physical findings that would even lend themselves to taking a movie or pictures with your cell phone etc to share with your doctor.
Also, as you already know, your symptoms are very unusual.
I know, it's hard to explain and by the time I make it into a doctors office, they are gone.
And therein lies the problem........
Well I think it might be time for you to take a very difficult, and bold, step to see if you can get some relief. It seems obvious to me that your current doctors have reached the bottom of their bag of tricks and, yet, you are still having these problems. Is this something that I'm going to be able to figure out using "chat" as my only diagnostic tool? Of course not....I'm good, but not THAT good. I do, however, think I can point you in the right direction.
You need a doctor, or a group of doctors, who are willing to spend the extra time to "think outside of the box" for you.
Ok, do you think there is anything I can do to help make me more comfortable when they come until my doc can find a cure for me
Therein lies the problem. Without knowing the cause, coming up with a treatment is very difficult.....and I'm sure you don't want to just be doped up on pain meds...that is no solution.
At this point I think the best thing for you to do would be to gather up copies of all your medical records and travel to a large University Teaching hospital. At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
If you could tell me what large city you live near and how far it would be possible for you to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.
I live in Michigan, I can travel anywhere to anywhere in the country. But, do you think there is anything I can do today to help myself. I have those shocks today and It's really annoying. I took a pain med but those never help, do you think there is anything I can do now to give me even a little bit of relief?
There is really nothing available over the counter that is going to help you based on what you have posted.
It would be wonderful if you could call a neurologist, or even your primary care MD and get in right now since you are in the middle of an attack.......
There must be some doctor who can see you right away so you can try to document what is going on.....
OK,I will call a neurologist, thank you very much.
Hi Dr. Rick, thank you for the follow up. No I didn't get in to see a doctor. As usually, it stopped before I was able to get in. I am taking you advice on going to a University to see if they can help me. This episode was one that was shorter than usually, it only lasted 2 days, but it was one of the most painful ones. I am going to do all I can to see if I can get some answers before it happens again, thank you very much.