[Jules4Yans]

Hello, I am new but I did introduce myself in the 'Introduce Yourself' section a bit earlier.

It just annoys me about the way in which my Doctors talk to me. I mean I am grateful for my Rheumi Doc who is more friendly but with my GP it took me a very long time to get him to believe me about not feeling right. Everyone knows when there is something wrong because you know your body and I just knew. But it took me something like 4 months for the GP to believe me. Instead he said its just stress and it's 'in my head' because I'm having personal problems, which I found insulting. Then I started to get very bad bruises and would get extreme bruises for just kneeling on the floor. His reply to that was 'wear knee pads'.....who carries knee pads with them??? Finally after having a blood test he noticed a positive reading for ANA but said it my just be a 'fluke'. So I had to go again because he still didn't believe me.....and once again it came back positive. This time he sent me off to a Rheumy but he said 'you could just be one of those people with a positive ANA with no actual illness'.

Now with my Rheumy doc she also said 'you could just be one of those people that has hypermobile joints, which cause extra stress on the joints'...but I refuse to believe that because I knowwwww when I don't feel well....I know when something is wrong. So after all the hassle she said it was drug-induced Lupus but it got worse after 6 months of stopping the meds so now she says 'it could be' SLE. But she won't say if it is or not, which is also annoying.

I'm just annoyed at the current moment lol and needed to get that off my chest! Sorry for ranting!

 

[LolaLola]

I have had Doctors like this in the past. He may be a bully or trying to spare you getting a label which has implications for things like insurance.
All the same you need help and I hope you get it.
x Lola

 

[heavenly]

Jules4Yans

So sorry for what you're going thru. But know so many here can relate.

If you haven't already, go to the Not Yet Diagnosed section here and to the thread titled, "Encouragement on your diagnosis journey". It talks about similar stuff. Hope it makes you at least feel better knowing you're not alone in this.

I know it's a tough time and it's not EZ when we're made to feel like that. But hang in there. These things can take quite some time. Maybe you'll be lucky and it won't take so long. Only time will tell.

Yeah, I had a rheumy say I was hypermobile, too. My kids are even more hypermobile than I was. With age, I've stiffened up quite a bit from my super flexible days.

Well, take care & keep us up-to-date.

 

[halfpintfl]

Hi Jules, Dr.'s can be very almighty-acting to say the least. I find that GP's , as a rule, always want it to bew in you head or ""it will go away soon"". I think the main reason is, the minute that you come in and say that you are hurting, that is their BUZZ word. they are afraid that you are going to ask for pain pills, and now-a-days, pain pills they do not want to write. I was with my hubby , and we were both in the room with my hemeotologist-oncologist and ny hubby asked him,"Do they think that a little old grandma will sell her meds on the street?" The dr. looked at my husband, and said "you would be surprised
and it's all around us" If we go in with a broken finger, that they can deal with.You have to continue to be a pest, you know what is wrong with your body, and it is something> not nothing. Keep going and get answers.:wink2: ​

 

[Jen79]

I have a lot of docs that acted like that to me and made me think that is was all in my head and nothing was wrong. I know you are very frustrated and are sick of going to docs and no one listens. You are the only one that knows your body the most and I hope you find another doc that listens to you and get treated properly so you can start feeling better.

JEN

 

[Maia]

When you are ill for months and months with no answers, the last thing you need is the added stress of going to a doctor that either minimizes what you're feeling or dismisses it outright.

Do you know what blood tests have been done and what has been found to be positive and at what levels? If not, request a copy of the bloodwork that's been done since you've been sick. It does often take a while to reach an official diagnosis, especially when DIL was initially suspected. I would imagine that you are about at the point where something will be officially diangosed since symptoms have continued for so long now after discontinuing the drug... could be SLE or could be UCTD depending on bloods and symptoms and doctor preference even!

My best advice is to learn about your disease, and become your own best advocate. When you are confident about your knowledge, what your blood test results support/don't support, then doctors such as this will not bother you as much.

My next best advice is to switch GPs if at all possible. Usually our Find a Doctor forum is for asking about a rheumy, but increasingly I'm finding a lot of people should ask for a good GP doctor in that forum as well. A good GP, that works cooperatively with a good rheumy, is a very important part of quality medical care since we don't go to the rheumy for everything.

 

[Jules4Yans]

I did persist....and this isn't the first medical condition which I'm persisting with either. I have Polycystic Ovarian syndrome and went to my GP who diagnosed it but was reluctant to actually treat the symptoms of it...and is still reluctant....i asked him to be referred to a specialist in that field and he said no....my symptoms are now getting worse. But I am persisting!

I am thankful because my rheumy doctor does listen to me....she takes on board each and every symptom I'm showing and also the pain I'm experiencing and she has actually prescribed me the baseline drug for SLE...Plaquenil (sorry if I mis-spelt that). I actually took my first tablet today so lets see how that goes over the next 6 months.

Thank you all for the suggestions! It's really nice to know that I have support!