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Autoimmune disease

They think I might have an autoimmune disease

10 replies

TheCatsPaws · 15/02/2018 15:40

I saw the recurrent miscarriage clinic yesterday and had bloods done. They seemed quite confident that in my case, the issue is autoimmune.

I was tested for rheumatoid arthritis two years ago, after complaining for several years of severe joint pain, fatigue to the point of being unable to get out of bed some days and taking all my energy to just walk to the toilet, fainting, severe period pain, low blood pressure and general feeling unwell symptoms.

I then developed back pain and an MRI showed inflammation either from a fracture or arthritis.

However my bloods came back normal and I was fobbed off with “depression, possible chronic fatigue”.

Now I’ve had four miscarriages and my joints are even worse. Was told at 23, none of this should be happening. Dr mentioned possible RA or lupus to me.

Can anyone with either of these conditions offer advice? Thank you

OP posts:
KateGrey · 15/02/2018 15:44

Have you been tested for coeliac? Not all coeliac issues are stomach related.

Sorry you’re feeling so poorly. Two of my children have coeliac and it’s truly horrible.

Leatherboundanddown · 15/02/2018 15:47

Have you been checked out for endometriosis?

TheCatsPaws · 15/02/2018 15:59

They tested me for coeliac before and it was fine but they’re testing me again.

They suspected endo when I was younger but never gave me a lap, scans are now showing a damaged tube and I get loads of pain on the side that it’s on. I’ve never had PID so endo is also being reconsidered.

OP posts:
SluttyButty · 16/02/2018 16:21

APS/ Hughes syndrome can cause miscarriages and that often with other autoimmune diseases.

Calmingvibrations · 19/02/2018 21:15

I’ve had inflammatory blood markers come back as low when I’ve been in pain and sometimes vice versa. And I have diagnosis of an autoimmune disorder. When you say Dr do you mean GP or specialist like rheumatologist ?

There’s loads on fertility friends website under autoimmune - but you may already know this.

I don’t have any advice on those two specific diseases you mention. But I know what it feels like to feel sh1te a significant proportion of the time. Have you been tested to see if you are HLA-B27 positive?

Please push and don’t be fobbed off. And I’m very sorry to hear you’ve suffered recurrent miscarriages.

ElanorGamgee · 19/02/2018 21:20

I have got APS and PA which was responsible for my many miscarriages. Good news is that it is fairly treatable, by the time my APS was diagnosed I had had enough both mentally and physically (double figures) but with a diagnosis it really is very treatable. Best of luck.

Purplelife · 23/03/2018 15:52

I have fibromyalgia ( fatigue, pain all over) look up the symptoms and google a fibromyalgia point chart and see if you feel pain in some of the points of the body on that chart
I also have Sjogrens syndrome ( joint pain , dry eyes, dry mouth) and Raynauds which is joint pain, cold and pain in fingers. I have been have infertility issues and my endocrinologist said the fertility clinic told them that there is an auto immune issue and he mentioned the Raynauds. So perhaps get tested for those things. I went to a professor of immunology as I was getting passed off, for the fibromyalgia diagnosis and that specialist discovered the other autoimmune conditions. I also have type 2 diabetes. Once you get one automimmune disease, you end up with a few!

havinganightmare · 02/04/2018 23:58

Hughes syndrome and/or lupus. My sister suffered recurrent miscarriages and Hughes was diagnosed. names after Prof Hughes, he practiced at London Bridge though may be retired now. Best of luck with diagnosis and treatment.

RubberJohnny · 03/04/2018 10:00

Have a look into low dose naltrexone, Dr Chris Steele has a good video from ldn now. But there is a wealth of info out there. Great for autoimmune diseases ( I'm just about to try it for my hashimoto's) but also great for either unexplained or explained infertility and recurrent miscarriage.
Lots of doctors are reluctant to prescribe but it's worth printing off some info ( some of the sites have an 'info for your doctor' bit. You can also get it without prescription by looking on the LDN now site above.

AuntyElle · 03/04/2018 10:06

When you say your bloods came back normal, what was your CRP level? (General marker of inflammation).

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