Having a lot of symptoms, I'm trying again and have my 2nd appointment with a rheumatologist, after a disastrous one, at least 3 years ago, when I was totally unprepared.
This time I'm making notes and taking photos. I was wondering if threatened miscarriages are relevant. With my first 2 pregnancies I bled. The 2nd a GP said it sounded like I was definitely miscarrying. With both I had to have early scans, luckily both pregnancies were successful. The 3rd however I sadly miscarried.
I know multiple miscarriages are relevant, but wasn't sure about threatened ones. I can't help but think it is relevant that for the 1st 2 I wrapped myself up in cotton wool, whereas for the 3rd I didn't at all because thought I wasn't pregnant after all. Not meaning at all that all miscarriages can be prevented.
Anyway, thoughts would be appreciated. I'm undiagnosed, and lupus is just a thought as a maybe in my head.
Hope you're all awap.xxx
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Zib78
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I would mention any symptoms or conditions you have. You never know what might be relevant (or what your consultants may consider relevant). I would definitely mention your problems in pregnancy. I had thrombocytopenia and pre-eclampsia during my pregnancy and my consultant made a point of noting these circumstances down.
When I went to my first rheumatologist appointments I made a chart detailing all of my medical history, the dates of symptoms and any diagnoses, the hospital I was seen by, and any medication I was prescribed. I also made a note of whether symptoms could be considered evidence of the lupus criteria (which you can find online). Finally, I made a note of what evidence I had for each symptom/ diagnosis (e.g. medical record/ hospital letter or photographs etc). I printed off a copy for my consultant and he put it in my file. We both found the chart very helpful as it provided a useful summary of my medical history. It also meant I didn’t forget to mention anything potentially important. The Rheumatologist could decide whether symptoms were medically relevant or not!
I also started to make a photographic record of my rashes, ulcers and swellings. I took these photos with me to my appointment on an iPad. My doctors found this very helpful as they could zoom in and out of the photos and get a good look at symptoms that weren’t visible on the day of an appointment.
I had two miscarriages and then for my third I bled even earlier at 8weeks. My GP suggested I stayed in bed and did nothing but read and watch the TV and forget I was pregnant. He said he believed that if there was something wrong with the foetus I would miscarry anyway. My mother prepared all my meals and I only got up to use the commode. I had to remain until 13 weeks, he said, or may be longer. It worked I had a lovely baby girl. I was concerned about having a second and another GP suggested I wait till she was at school because of the miscarriages and threatened miscarriage/need to rest. I did and got pregnant easily, but sadly miscarried twins because I just couldn't stay in bed with having my daughter.
I was not diagnosed or suspected of having Lupus then, but there has always been something amiss with my health. I never really felt I got the help I needed, although having said that the GP was right about the bedrest and I am not sure what help there would be anyway as there is no cure for some things just learning to manage it and accepting that I am a bit different to the norm!
My GP said that he couldn't say for sure that it was lupus, but possibly drug-induced lupus. I didn't pursue it too long because all the blood tests were making my arms black and blue, swollen and painful and he said there was no cure.
I went the complementary route changing my diet to a more healthy nutritious one; getting adequate sleep; avoiding EMFs as much as possible; exercising and keeping stress levels as low as possible - training in natural healing with all the good points like meditation, positive thinking and trusting.
I have many allergies and avoiding them helps, too.
Thank you. All sound good things to do. I understand about there being no cure. I suppose I'm worried about damage that could be done if not treated, to organs etc. Sounds like you've found the right track for you. Thanks again for replies x
Hi dear. Of course all that happened to you is relevant and you need to mention it to your Doctors (all of them).
There is a disease named Antiphospholipid syndrome APS .... try to read about it and ask your rheumy if you can be tested for it or something to explain those events.
There is a forum here in Healthunlocked with great info on APS.
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