Yet another deaf doctor

[Colt]

I've really just had it lately. For those of you who have kept up on my story you'll be happy to know I finally made it to a rheumatologist. He refused to acknowledge that I had any symptoms pre-prednisone. Every time I told him about how sick I was he continued as if I had never said a word.

Apparently my whole body joint pain comes from prednisone withdraws and being flat footed, and yet again my blood tests from months ago while on 40mg of prednisone prove that I have no inflammation now or ever.

Of course the fact that I had this joint pain for a good 10 years prior to taking my last course of prednisone doesn't matter, because... if I wasn't getting medical treatment for 6 years it's because I wasn't having symptoms, not because I was so poor there was no way I could pay a doctor to see me. I just couldn't have had crohn's disease if I wasn't seeking treatment. No one could tolerate that without at least going to the ER.

Apparently I'm wrong. The reason I was run out of high school and college was not that I spent more time writhing in pain at home or on a bench in the hallway outside of class than I did sitting in the classroom. It was something else. I'll have to ask at my next appointment why it was I couldn't hold a job or get through school for those 6 years that I wasn't getting medical treatment. Maybe it's the prednisone withdraws from the prednisone I was taking back in 2001. Or maybe I'm just a big cry-baby and can't handle being flat footed and having IBS.

Hell, they won't even listen to what the findings were back then. Either that or they're convinced I'm lying and they're just trying to humor me by not accusing me of it to my face. Losing my medical records has screwed me so badly it's unbelievable. Or maybe not. If I had my old blood test results and the colonoscopy report they'd probably just ignore that too. Probably decide I had forged them too.

Frankly I'm about to just give up. The rheumatologist gave me a year's worth of Tramadol for pain that's supposedly going to be done with in a week after I'm fully weened off the prednisone (I don't think they even believe their ******** half the time). I also got a bunch of muscle relaxers for the IBS. So, I'll just take my narcotics 3 or 4 times a day to make it somewhat tolerable, ignore the non-pain symptoms, and shut up.

He did do a little something though. He ordered a vitamin D level to see if that's contributing to my joint pain. Of course if it's low I dare not even bring up that it's likely due to crohn's related malabsorption. He's already explained that vitamin D malabsorption is simply idiopathic and he'll just give me a prescription for vitamin D pills. Idiot is right, but I digress... We'll ignore that I already take Vitamin D with my multivitamin every morning and it's clearly a rather severe case of malabsorption that needs an explanation. Regardless, it's probably fine because I doubt my vitamin D levels went up because I started prednisone. Oh, wait, I forgot that I didn't have the joint pain until I started tapering. Tell me again why he bothered ordering this test.

He also ordered some x-rays of my ankles. If they show joint damage 'we'll discuss that at the next appointment' which is at least 2 months away. Of course I'm sure he'll ignore the likely cause which is joint inflammation and chalk it up to my being flat-footed. No need to X-ray my hands or anything that would show joint damage that couldn't be related to my damn flat-footedness and would show inflammatory joint pain MUCH better than the larger joints in my ankles.

I'm starting to regret ever going through this process in the first place. Maybe I was better off in horrific physical pain than dealing with the psychological pain of being humiliated by a doctor every few weeks.

 

[CD68]

How do you hide a million dollars from a specialist?

Put it in the patient's medical history.

 

[Colt]

Of course I feel like **** today too. I probably am having some adrenal insufficiency and/or crohn's reappearance thanks to the prednisone taper but that really only covers the last couple of days. Regardless it makes this crap and the related stress all that much harder to deal with. I feel like I'm going to pass out any moment now.

I wouldn't be surprised if I was anemic but we'll never know because the doctor didn't bother to redo any tests now that I'm almost off of the prednisone. I don't think they ever will really. That one set of tests is going to haunt me for the rest of my life. 30 years from now I'll hear that I'm not sick because the tests in my records said that I was fine. Well, other than the elevated white cell count which instead of being retested was permanently shot down as being completely due to being on prednisone.

Would it kill them to do a damn CBC/ESR every few months? I've run 6 fricking CBCs on the same patient in a 10 hour work day and I run a CBC and CMP on literally 95% of the patients in the hospital every single morning for no reason whatsoever for the vast majority other than 'Just in case.'

 

[Colt]

Part of the problem is that I don't have my medical records so knowing what was going on before I came to their clinic would require, oh my god, asking questions about and listening to me provide a complete history and list of symptoms. I find it hilarious when they take a complete in-depth medical history of their patients on House. I don't think any doctor has ever done that in the history of medicine.

 

[TammySue62]

Wow finally someone who has the same joint and muscle pain like me.
I have been complaining about this for several years now. I came to my
own conclusion that it was due to the tapering of prednisone .My body
will not let me go below 10 mg. believe me I have tried.Some days I cannot
move or even get outa bed because of pain due to once again the great
drug PREDNISONE. My Dr alson put me on well finally didlaudid seems to be
my drug that works the best. Its like here take these 4 times a day and
shut-up more or less. Although I must admit the remicade infusiond help
somewhat mostly for my fistulas which are another big pain literly.

I do feel for you cause I have been going threw the same thing
except I dont have flat feet.
Im just at the point where I have stopped complaining because no-one
really listens any more not even my family.

This forum keeps my sanity most of the time.

Will you keep us posted

Thanks

 

[soupdragon69]

Ach Colt I am so sorry the prat didnt listen to you! This is crazy!

I went to rheumatology yesterday and came out with a whole pile of stuff... The registrar I have been seeing is listening to me thankfully and I feel very lucky on that front.

They stopped my methotrexate 3wks ago because my liver function was deteriorating. She wants me to see the rheums nurse in 8wks time to hopefully restart it once my levels are back to normal and give it another go.

She has started me on Gabapentin which is a drug used mainly for epilepsy but in lesser doses is used for neuropathic pain which she says I also have quite badly as I get "electric shocks" down my arms and through my feet on top of ongoing pain in my joints. The plan is to try and monitor it and improve things.. She hopes it will also help me to sleep - yet again I have been up since after 3am with pain and discomfort grrrr.

She said she could feel the inflammation in my wrists and got the nurse to fit me with splints for both hands/wrists and has told me to wear them at night only to help rest the joints. Am having fun typing at the mo with them on but was determined to answer you!

She also gave me an intramuscular injection of slow release methylprednisolone (oh joy steroids again after stopping them mid January) to help with the inflammation meantime til we can restart the metho.

She did my forms for Vit D to be rechecked next week when I have my bloods done pre remi to see if the IM injection of it has helped in any way too.

The difference in our care is phenomenal and I truly wish from the bottom of my heart you could see my docs here!!! Am still waiting to hear from gastro about review and have my next remicade next Tues.

Hang in there my friend - am thinking of you ((hugs))

 

[Colt]

Tammy, sorry to disappoint but mine is not prednisone related as much as the rheumatologist wants to blow it off as such. I have had it for many years before taking prednisone and unlike prednisone related pains which are usually muscle-related pain due to potassium deficiency my muscles are fine. I only have pain in my joints.

 

[Colt]

15 days later I finally get a form letter (which the jerk didn't even bother to fill out. Just sent the template without any individual information) stating that I have a vitamin d deficiency and a prescription for a super-concentrated vitamin d supplement. At least he admitted that I had the deficiency. Watch as no one ever considers that it's malabsorption due to crohn's disease or due to inflammatory vitamin d25 depletion (which can be tested by doing a vitamin D25 and vitamin D125 together and would further indicate severe inflammation).