Vanilla_chai,
Yes, I totally feel your frustration. It does make it hard with the "not knowing". I am still trying to find out what is wrong with my GI tract! I have been having issues pretty bad for the last year and half already. My gastro keeps saying IBS. He went on vacation for a month so I have to wait until Nov to even see him. I am demanding he do some tests. I saw another GI doc who is in the same facility as my gastro since he is out of town. Well I practically begged for him to order an MRE for me. He would not do it! So now I am seeing my regular doctor to have her order it for me. So I do know what ya mean about getting frustrated.
For you to have suffered for that long and then ended up needing surgery due to neglegant doctors, you should sue! That is crazy, but I am sad to say I am not suprised. I also have IC ( interstitisal cystitis) a nasty painful bladder disease. I actually dx myself before any doctor did. I went through about 3or 4 urologists before I found a urogyne doctor who dx me with the IC. I have had to be my own advocate throughout the last 9 years due to all my health issues. I have had to do the research and find the right doctors and stuff. It has been exhausting. I mean it is sad when people have to do their doctors job for them!
I mean with the elevated ANA, maybe your doctor just made that comment as if saying" well we already know your sick".
One thing I have found is that now with me being sick with so many things, when I go to the doctor or a different specialist, they look at my record( or should I say glance at it), and just kind of shrug me off, saying, well you have a lot of issues going on, it's probably all related. They do not seem to want to deal with it. Thats how it feels. Like even my gastro doc, I am at one of the best leading hospitals here in Chicago and my GI doc kind of keeps on blaming all my GI issues on IBS. I have not even had tests yet! I think a person who goes into see a doctor that is healthy and has no past health issues get taken a lot more seriously than someone who already has other health issues. It sure seems like it's that way. I think they just do not want to have complicated patients that have other health issues. It really sucks.
Anyhow, try not to worry. I would just get an appt. with a rheumy doc so he/she can do some blood panels on you just to see what is going on. It may be just the crohns elevating it too, who knows. Try not to worry to much. I know that is hard seeing as you ended up in surgery due to neglegant doctors. Just get an appt to put your mind at ease. Good luck. Feel free to PM me anytime,even if it is just to vent
Hi All,
I just got diagnosed recently with undifferentiated connective tissue disease. The diagnosis was given in a matter of days. I had an ANA of 1:640 but that was taken almost a year ago - it was overlooked in my file for almost a year basically - hence the rushed diagnosis I think!! I don't know why I didn't get a Lupus diagnosis because I have a lot of the symptoms, including the crucial antidsDNA marker. I don't know anything about the pattern yet as I saw the Rheumy only once. I got sent away to be seen in the Autumn for crying out loud (I hurt all over) but of course I was not happy so I get to see the Rheumy again - and I am not fully diagnosed rheumatologically as yet as I have other issues.
And I have had major GI issues for the past two years, some symptoms before that but came on full force two years ago. They did not take me seriously for these two years though I spent a year basically lying on the sofa because my anorectal area hurt so much and I could not even sit with it for a whole year. What changed after that? Massive amounts of natural anti-inflammatory supplements and some antibiotics helped so much - though I still flare and have sitting pain with it because my body is fighting back against these. And this was me taking the bull by the horns because no Dr would help me basically. I clearly had infection and INFLAMMATION but they still don't believe me - even though I have got diagnosed with a chronic inflammatory disease now. However, because I have now got the UCTD diagnosis (auto-immunity) I am hoping they will take my GI symptoms seriously this time - got a new GI doc. Like you, Ihurt, I have had to be my own advocate. Yes it is exhausting and it feels like we are fighting a battle all alone. It's so lonely being like this
I believe my UCTD is Lupus and I am going to push for a diagnosis based on some other symptoms I have got going on with the antidsDNA being high too. I don't have a malar rash but I have long had severe rash reactions to insect bites. I have extended family members who have had the rash but got no other symptoms of Lupus. Auto-immunity is in my family on both sides, some diagnosed as such, some unbelievably not diagnosed as such (though some of it is back in time too) !!
You don't need the high ANA to have Lupus, but I can see how it hinders diagnosis if it is non-existent or just low (in what is considered the normal range). For those of us in the UK, London Drs may be better here - they are the experts. It's just so far to go for many of us and it might take a long time to get a referral owing to demand. I have had what I believe are Lupus headaches for over a decade, and noted severe reactions to insect bites as long as 13 years ago on an overseas trip. also think a symptom I had in pregnancy 20 years ago was quite likely Lupus-related. I doubt my Rheumy will accept I could have had Lupus for as long as this (as yet to be formally diagnosed anyway), but my symptoms would suggest otherwise.
I have many GI issues - some might be Lupus-related I am thinking. But some are not I think - possibly Crohns or Celiac Disease (from my symptoms). I am yet to have a scope beyond the sigmoidoscopy I had which was "normal" but then NO biopsies were taken so they can't rule out what might have been happening at microscopic level or below the mucosa.
Auto-immune diseases tend to cluster. And I am borderline hypothyroid too - been this way for a long time now but has slightly progressed in my last test. Hashimo's is in my extended family.
As some of you have pointed out, there needs to be more communication between Drs. So I am going to ask my GI doc to open some communication with my Rheumy. If my Rheumy is not interested (has been disappointing until now) I will find another one as I too am fed up with bad doctors. :ybatty:
We need to follow up on all our tests is what I have since learned - because Drs make crucial mistakes - my last GI doc said all tests were normal - HELLO!! - there was something amiss with ALL my tests at the time this was said!! I actually had to tell the doc what was written in the radiology reports because they clearly had not read them!! We clearly need to obtain copies of scans and reports. I have not yet done that with 3 more recent xrays. I am worried now about being complacent considering past experience with Drs not reading reports!!
We need to remind them to take biopsies, etc - they don't all bother to do it. Some of them may get annoyed - but when we have had bad experiences with sloppy Drs with a bad attitudes, what should we do? My colorectal surgeon who didn't arrange biopsies was a locum so I think he could not care less - a rolling stone - gathering no moss (reputation) and all that!! He hadn't read the radiology reports either. And neither did his successor (he moved on being a locum). I think I was sent to locum in the first place because he was available at short notice - I can see why - rude beyond belief with a really bad attitude.
Stay strong everyone, and be your own advocate rather than let sloppy
disinterested overpaid under-reviewed/
under-supervised consultants prolong your suffering.
:ghug:
juljul xx
