Failure to diagnose.........

[alanjh595]

While I can't relate to the tailbone issue, I can relate to not having a diagnosis.

About 20 days ago I passed out and stopped breathing. Been passing out pretty regularly since then and 3 times in the last 3 days. Been to the hospital had ecg, mri, every blood and heart test you can imagine and they can't find squat. Healthy as a horse they say. Yet I still pass out randomly. Then I feel like garbage the rest of the day. Really starting to effect my life.

There is a reason why they call it "practicing" medicine

Are you still driving?

Has anyone considered Epilepsy?

A good way to find your triggers is to keep a seizure journal. After each seizure, note the following:

day and time
what activity you were involved in
what was happening around you
unusual sights, smells, or sounds
unusual stressors
what you were eating or how long it had been since you’d eaten
your level of fatigue and how well you slept the night before

[Silverstarqueen]

Sounds like it could also be fibromyalgia. Have you tried anything like Lyrica, in combination with usual pain medication (tramadol or whatever)? There is a problem with tramadol however where it doesn't seem to work very well after a while for many people, (from personal experience with busted vertebrae) so may not be the best choice.

[binky11]

No that has not been ruled out, although the main symptom seems to be balance issues which I don't have. I don't think I have been tested for much really, they give you a cat scan, if if nothing shows up, they say you are fine and send you home.
Although mine came back diagnosing severe degenerative faucet disease, but they don't think that is what is causing my trouble.
I am still pretty desperate and finally wrote a letter to KGH. Well that means interior health. I was very assertive, we shall see if and when I hear back from them. I don't know what else to do.

Don't feel too bad. They did a CAT scan on a family member and found an 8 cm hole in his diaphragm, and sent him home with no follow up. They also said that wasn't causing his symptoms, when it obviously was, so you can't go by them saying that. We had to find an internist who said it should be fixed. It could have killed him, but so what, they don't care. If what you have is not going to kill you on their watch, they see no need to fix.
Another family member they were trying to discharge, he looked bad, he coded right there while the poor nurse was doing his vitals. They did not want to do anything for him. They only revived him because family member was right there and insisted. If what you have is going to kill you on their watch, they see no need to fix.
Another family member had an intestinal obstruction. They insisted it was "constipation" and only operated because family insisted.She lived another two years relatively healthy, so not at deaths door yet. So you see how it works now?

You hit the nail on the head with those three words. THEY DONT CARE! It seems this way, but only seems to have changed in the past few years, I believe there was a time when they actually did seem to care. There are way too many people falling through the cracks. So many life debilitating cases that they either can't diagnose or misdiagnosed.
I asked my doctor what on earth people like me are suppose to do, his answer was........they off themselves! Unbelievable!
What is happening with our health care?

[kgcayenne]

If someone is willing to do an EEG: “A possible autoimmune etiology for seizures may be considered in the presence of continuous slow waves, FIRDA, and delta brush pattern in the EEG.”

Source:
https://www.ncbi.nlm.nih.gov/pubmed/26240088

[binky11]

Well here we are, a whole year later in this thread, and I still can’t lay down. Three years now. If someone had told me this time last year I would still be going through this, I would have said, not a chance!
Anybody ever heard of TMS or Mind/ body syndrome? A not so bizarre theory really. But anyway I have bought the book and done it all, with no results yet. I hope I am not back here in a year from now saying the same thing. I will NEVER complain about fibromyalgia again. That was a piece of cake in comparison. Child birth was a piece of cake in comparison, and I had a difficult one. I sometimes wish I could be paralyzed just to stop from feeling that pain. Three years on my feet has left me very weary and exhausted.

[SuperMom]

Well here we are, a whole year later in this thread, and I still can’t lay down. Three years now. If someone had told me this time last year I would still be going through this, I would have said, not a chance!
Anybody ever heard of TMS or Mind/ body syndrome? A not so bizarre theory really. But anyway I have bought the book and done it all, with no results yet. I hope I am not back here in a year from now saying the same thing. I will NEVER complain about fibromyalgia again. That was a piece of cake in comparison. Child birth was a piece of cake in comparison, and I had a difficult one. I sometimes wish I could be paralyzed just to stop from feeling that pain. Three years on my feet has left me very weary and exhausted.

I'm sorry to hear that you are still suffering, Binky! I haven't heard of TMS but will look it up later.

Although I think my pain is less severe than what you've been experiencing, I do understand why you sometimes wish to be paralyzed. I've had similar thoughts. Even amputating my legs would have to be better than what I'm dealing with. Unlike you, I know why I'm in constant pain. I've tried everything non-surgical and my disc is no better than it was when I herniated it nearly two years ago; it might actually be a bit worse.

Hoping you find some relief soon!

[Poindexter]

Well here we are, a whole year later in this thread, and I still can’t lay down. Three years now. If someone had told me this time last year I would still be going through this, I would have said, not a chance!
Anybody ever heard of TMS or Mind/ body syndrome? A not so bizarre theory really. But anyway I have bought the book and done it all, with no results yet. I hope I am not back here in a year from now saying the same thing. I will NEVER complain about fibromyalgia again. That was a piece of cake in comparison. Child birth was a piece of cake in comparison, and I had a difficult one. I sometimes wish I could be paralyzed just to stop from feeling that pain. Three years on my feet has left me very weary and exhausted.

Dont know if you've ever heard of John Sarno but his book called Healing Back Pain - The Mind Body Connection has saved three people I know from major spinal surgery. If I were to provide a layman's summary it's that everyone has issues that should cause them pain but not everyone has pain therefore it's not simply the injury. That the mind itself may be the deciding factor and his book helps you combat the pain by addressing its connection with the mind. When I googled your mind body syndrome his book came up and knowing how its helped others it may be worth a shot.

[Catsumi]

^^^ That book by Sarno is available at Okanagan Reg library in both audio and print.

He also has another publication titled "Divided Mind and Body" in print, at ORL

Hope this helps

[binky11]

Yes, as I mentioned in my earlier my post, I have gone the whole TMS/ Mind body theory program and have read both Dr Sarno’s books. When Dr Sarno died it was a Dr Schubiner who seemed to take over from him. He is also based out of the USA. I have Schubiner’s hard copy book at home and also bought his online program. Spent the four weeks working the program diligently. Some seem to have success right away, once they discover TMS was their problem their pain went away. Others it takes months. And for some, doesn’t seem to work at all. After pouring so much time into their theory, I was convinced this must be my problem, but guess maybe it isn’t. Although I still do the daily affirmations and in fact doctor Schubiner actually spent time with me on the phone, I am still trying to stick to the positive affirmations and am trying not to lose hope. I have had this issue for three years so it may take more time to get rid of it, it hard to continue with all this reading when you can’t sit down. I’m about to lose all my teeth in the next few months from all the acid from vomiting every night for three years. I’m getting varicose veins from always being on my feet. I am trying so very hard not to lose hope, but it’s getting very difficult.
And all the best to you supermom!!

[flamingfingers]

^^Consider asking your GP to refer you to a psychiatrist/psychologist who is skilled in hypnosis and TEACHING you self-hypnosis.

The psychiatrist I worked for taught me self-hypnosis which allowed me to deliver both of my kids without a twinge of pain. I still use the method for headaches, backache and leg/arm pain. And to sleep well.

[binky11]

I would not go to a hypnotist, and psychologists are not covered by MSP. Doesn’t matter if you have a referral anymore.
I am back into Dr Sarno’s approach and am going to hit it hard. I should never have given up on it after a month.
They say that everyone has TMS, some just to lesser degrees. But people do not turn to this approach unless they are desperate.
I think all people with chronic pain and other ailments should read his books. I think he has nailed it! But you have to be very dedicated, it requires work on our part, and people just want quick fixes from their doctors.