I'm venting here.I havnt been diagnosed but suffer from other autoimmune and am waiting a lupus retest panel on Friday this week.
I have positive speckled result but not titrated so an incomplete blood result.
I have hashimoto, fibro, pernicious anemia and scalp psoriasis.
However, had severe muscle cramps in my chest. Had it several times this last year, it lasts an hour at least, leaves me in pain for a few days like I'm bruised internally. Have been to a&e for this and it's not cardiac.
On Sunday, I had a severe cramping episode with heart burn. I suspect a trapped nerve. I didn't go to hospital as it's not cardiac and didn't want to waste people's time. I also was in my way to work and had to work after the episode.
BUT MY RANT IS
Since when is ok to have the doctors speeches as soon as you get in there
"What do you think it is?"
"What would you like me to do?"
And then proceeded with, I don't know what it is and I haven't got a magic wand to fix it. I'll wait for the blood test results from Fridays blood test.
This is everytime I go to the GP.
Aren't they they the knowledgeable ones?
I left feeling like a liar and a fake.
No plans put in place.
Just left and told to go back to a&e it happens again.
He also has said that it's most likely my fibromyalgia (which is the blame for everything)
I think I have lupus, but we shall see.
#sad
#letdown
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Peppermints
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Many of us have found it ridiculously difficult.The rheumatology departments that the GPs refer us to, often look for certain bloods otherwise they just discharge.
Hospitals that list Undifferentiated Connective Tissue Disorder (UCTD) in the conditions they see might be more open minded.
I have been thrown between GP and 111 lots of times trying to get help. One 111 doctor once telling me to go to A&E as nobody was doing anything.
More tests can be done in A&E, than by the GP sometimes. I found it was worth planning out the journey so it is easier to do, taking what you need. A drink, some food and something to do. Getting there 7am in the morning I found best as more staff getting into work and wait less long.
It is hard to get help and we need to find the right people, it is why we are called lupus warriors. It is fine to rant.
... I hate having anything to do with my GP... for several years I knew something was wrong but told it was menopause, anxiety, told to remember I was 60 not 30 and to expect to be 'tired'. It wasn't just tiredness though, it was pain all over my body, pins and needles all over my body, headaches, peripheral neuropathy, coldness, muscle cramps in my calves making it impossible to walk. I could go on. I went private in the end and now see an amazing rheumatologist, who after my first visit, put me on his NHS list. He saved me, I thought I was going insane until he diagnosed MCTD - primarily Sjogren's and Fybromyalgia 😳. I think many on here have been in your position, so don't apologise, we all feel your sadness so sending you a big hug. For what it's worth I think you might be right with Lupus looking at your pic. Xx
Hydroxychloroquine, Pilocarpine, Amitryptiline and Fluoxitine. Things have been pretty settled, but only got an actual diagnosis in November after several years. It's been a nightmare and had to go private in the end, however the consultant I saw put me on his NHS waiting list for appointments going forward.
Hi Peppermints, it's a long up hill battle getting a diagnosis. GP'S really don't know enough about this condition, get referred to a rheumatology consultant and bypass your GP altogether. I'm lucky in that I have a really good rheumy but if you're not happy ask for second opinions.
Hang in there and keep notes and pictures, it’s taken me over 10 years to be diagnosed. I’ve had a lot of very strange illnesses over the years, been kept in hospital for weeks at times and still no result. My bloods never showed anything apart from a very high rheumatoid factor and Esr. My Rheumy is a stickler for bloods, but she did eventually diagnose MCTD and after a skin biopsy it was lupus. I know how you feel, it’s just so frustrating. Take care x
Oh, I can totally relate to that! Even now my consultant has to keep clarifying it's not all in my head, my mental health has taken a real battering. I don't think I'll ever totally accept my diagnosis.
oh Infeel your pain.Since 2009 I have been diagnosed with a virus, then possible Leukaemia, then Lupus, then not Lupus it is Bechets, then you have Low Grade lymphoma, went to Lupis Centre no it is Lupus, reviewed six months later by the same Rheumatologist and no it is UCTD and discharged. Then you have Fibro , then it is Lupus but not active and Bechets and Fibro, Then you have Fibro and ‘hysteria’, then not Fibro but UCTD and currently it is mainly Bechets but not ruling out Lupus but it is not active currently.
It is frustrating, soul destroying, demoralising. GP`s generally do not know enough but should refer you to a Rheumatologist. The waiting lists are so long for the NHS so make sure/insist that your GP refers you urgently. No they don’t have magic wands but they do have the key to the right path for you just by referring you swiftly.
Don’t give up, there are decent Rheumatologists who will look at the whole of you and not just blood tests. Good luck xxx
Rant away Peppermints! We’re all right behind you. The AI road has always been long and rocky but what you have described is an added dimension. We can all see that healthcare has changed for the worse for many reasons. People have lost trust and I have witnessed a massive shift in approach/attitude on the medic side as a consequence. I am convinced that a contributing factor has been the advent of Dr Google. People go to the doctor armed with information (and misinformation) they have found online, already sure about the diagnosis, just looking for confirmation and getting mad when the doctor doesn’t do their bidding. I know people like that, I’m sure many of us do. I could muster some understanding for a GP who starts by asking what the patient thinks it is when probably 8 times out of 10 the patient has already consulted Dr Google. It saves time when appointment slots are already so short. But those of us with AI disorders understand that the human body is more complicated than the internet and social media would have us believe, we are reminded daily about its complexity and the interconnectedness of its various systems. Like you I regard doctors as the knowledgeable ones, they’ve had years of clinical training after all. Yet even with all that knowledge, experience and skills they can be confounded, and in every field there are good, bad and indifferent practitioners - the support I have received from my rheumatology department has been poor as well as infrequent, I’ve had to rely on GPs. We all have to find a way through the obstacles. As if it wasn’t already beyond frustrating, this ‘new’ way of healthcare makes our lives doubly difficult. Sending a big virtual hug to you and everyone on here x
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I Think I May Have Lupus? I'd be so grateful for some advice!
Lupus test?
Next step?
Now I am cross! Why don't doctors communicate with patients??!
