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Am I crazy to want a real diagnosis,not just a clinical one?

Jul 27, 2016 7:40 AM

I have a very complex medical situation, and I seem to be collecting diagnosis all the time.
My doctors basically just look at my symptoms and say "ok you must have this. "
So when people ask me what I have I say "um, so I have MCAS, but that's a clinical diagnosis.
I probably have POTS. Oh, and a immunodeficiency but we don't know what kind. "
I even had a doctor who strongly suspected I had a disorder, and we walked around telling everyone I had it until my doctors decided otherwise.

Its not that my doctors don't try, but I feel like they don't try hard enough. They send me to a few specialists, they agree there is some sort of disorder in their field but they don't know which one, and we move on. But I feel like we should be doing more to get a diagnosis. Shouldn't that also be a priority? What do you think?

Jul 27, 2016 8:05 AM

Nothing wrong with searching. But sometimes we only end up banging our heads against the wall. Causing more stress and worry. Lets face it medics dont always have answers.

NO YOU ARE NOT GOING MAD!!

If we are given a label and treatment, its likely that symptoms may always be there. There is no magic pill for Chronic pain..but many many causes.

We can only deal with the symptoms that we have daily. Its hard but your not mad.. just my thoughts. Good luck! Gx

Jul 27, 2016 8:36 AM

Hey Hopetobe! !!!!

I know what it's like being passed from pilar to post and wondering if you will ever get a diagnosis. I have a rare condition that usually means that I have to educate doctors on what it is or I get "I'll Google it!"

You will get there with a diagnosis just have a bit of faith! I thought that once I had a name for my illness that the doctors would be able to fix me .. Unfortunately not!! I found that it was just the start of another very long road!!
So take a deep breath. . Exhale. . And repeat!!
We are all here for you if you need to vent or even share good news!! Xxxx

Jul 27, 2016 8:50 AM

The most important thing is to find a way that u can personally make urself actually feel better! I though diagnosis would make me happy... maybe it did for a bit... but not for long! The relief of giving it a name was good at first but after a few years i realized i still felt shit every day... i just had a different guy saying the same stuff... life goes on!
After 20 odd years of ups and downs of diagnosis... i can quite honestly say... i am past caring what they wanna call it... i just want the support to cope with it! I have found the UK NHS to always seem to pass the buck, so to speak! Its not spinal its nerological... its not neurological... its ortho... finally i stopped trying to fit in their little boxes... and to take responsibility for my own recovery by learning lots of small ways that i could personally chip away at that pain deficit myself... and learn to adapt and move on... and live again! To be the best that i can be... not defined by the labels they like to give me! And once they gave me one dx... i collected another 7or8 diagnoses in the subsequent years... so at what point does it stop?

It may be really powerful to u now... but it may not bring the relief u want it to... spesh in subsequent years.

Such is life 😙


only one totake responsiblity for my symptoms... weas my pain management team!

Jul 27, 2016 5:02 PM

Hopetobe, probably the smartest & truest comment my PCP ever made was, "Doctors practice being doctors, but we don't always know everything or get it right. We're only human after all."

Jul 27, 2016 6:18 PM

I agree totally with your need to want to know exactly and you deserve to know. I also agree with flappys doctors practice and the medical world is always changing. I have heard a similar term from a nurse. Saying that as a nurse if you ever feel you know it all your in the wrong field.
Now even with that said I know it does not make your frustration any less.just know we are here for you.. and we all pray that one day the medical field will actually come to one consise idea.

Jul 27, 2016 9:10 PM

Thank you all for your support. Yes, I know that there is no magic answers. I have had too many doctors (including the specialist in my disorder)tell me that they just don't know what to do with me.
That said thank you for the validation. I'm going through a crazy time, and I guess I just wish there was something my doctors did have a answer for.
The only thing that can treat my allergic reaction to meds I need to take for systemic thrush is iv fluid, which means a serious risk for my immunodeficiency. Earlier this year, after 6 months of a port for iv justa tion, I ended up with a heart infection that spread to my lungs and I was hospitalized for 4 weeks for fear of septic shock.
I guess there are no easy answers but I wish at least with my mast cells its like they have a clue what to do.., with no idea of what kind of immunodeficiency I have they can not give me treatment... or even know what to expect.. life 😊

Jul 28, 2016 2:18 AM

Whenever a doctor told me "you probably have xyz" I asked what tests he/she can perform to be 100% sure and then requested to have those tests done right away. Because otherwise they would have just given me meds for that condition and told me to come back 3 months later to see if they worked and prove/disprove the diagnosis... I call that being treated like a guinea pig. It saves the insurance money but I lose valuable months of my life. In order to get empathy and a sense of urgency from doctors I asked "what would you do if your child had those symptoms?". That usually worked as a gentle kick in the butt (pardon my french) to speed up getting properly diagnosed.

Jul 28, 2016 10:42 AM

Wanting to have a Dx and to be treated for -That, makes complete sense.
Taking a prescription regimen to see what happens, is understandabe in some cases but you're right to be concerned. Every thing we put into our bodies has side effects, so yes. Definitely, being a guinea pig is not optimal treatment. And after what happened with the heart infection, you'd be crazy Not to want a real diagnosis. I hope your docs have the level of concern this deserves.

Also, for me, regardless of the ugly (e.g., MS) diagnosis, I feel like I now have something to "get a handle on". I have a way to talk about it without lengthy explanations. Part of me relaxed and I'm grateful for a treatment I said I could never do, daily injections.
So yeah, you are not crazy. Probably certifiable, like the rest of us, (chronic pain will do that) but Not crazy for wanting an diagnosis.
Have a good day.

Jul 29, 2016 2:12 PM

Tha box. When we see my allergist/immunolgist I will bug her. Thanks for convincing me to!

Jul 29, 2016 5:58 PM

Hopetobe, I felt the same way before I went to the Mayo Clinic. My own mother even says obnoxiously, "is there anything you don't have?" It's so demeaning. I have had so many diagnoses that my rheumatologist implied that I was causing the loss of use in my hands before my wedding when my hand therapist said it was so obvious that I couldn't do that. I relate to your frustration. I am going to the Cleveland Clinic as soon as we settle in our new home because my neurologist thinks that I have mononeuritis multiplex. Best of luck, try a facility like Mayo or the Cleveland Clinic where all of the dr's are under the same roof. It helped me a little.

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