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I'm not officially diagnosed with lupus, but I read a book that says 'if you have 4 or more of the following 11 symptoms, probably yes...'.

So, probably yes.

Planning to visit my GP this week - girding my loins as we speak... Hate doctors. Nothing personal, just... hate doctors.

After your third or fourth miscarriage, the bedside manner gets really old. 'I'm sure this is nothing to worry about...'.

'Oh, how nice for you. Find me someone who gives a **** then!' is what I never said out loud...

And when you're hoping for answers, a cosy shrug and 'just one of those things - I wouldn't blame yourself! It's probably nothing to do with the fact that you stayed at work so long/ ate that soft cheese/ seem to be a bit of an over/ under-achiever/ seem to work out so much/ so little' doesn't help a whole lot.

And I know we're supposed to love all midwives, but is it just me, or do they actually *hate* us failures? With a blind, shiny, bright-as-a-bunny panic they daren't admit to, but will nevertheless quietly punish us for?

Just me, yep?

Helen

 

[raggedyann1]

Helen,

Hello and welcome to the Lupus Site. I am glad you have found us. I can't comment on mid-wives as I never got pregnant. I do know how difficult it was for a dear friend. Other than the significant issue of multiple miscarriages what other symptoms are you having? It is generally critical that one of the 4 criteria be from a blood test, preferably the ana. Which in itself doesn't "prove" someone has lupus but that it points doctors in the direction of rheumatology.

I would suggest that you treat this appointment delicately. Please don't tell the doctor you think you have lupus and then refer to the book you are reading. Doctors do not like patients who diagnose themselves. Perhaps you could approach it from the point of figuring out what is going on that you continue losing babies. I would insist you want any possibilities investigated as being the cause, because then they could at least be ruled out. That way it becomes the doctors "idea" to test you for lupus and other related diseases.

Let us know how your appointment goes.

Take care,
Karen

 

[Katharine]

Hello Helen and welcome here,

I agree with Karen that you have to handle docs with a lot of diplomacy. It is sometimes very frustrating. I know that my GP was thinking Lupus a long time before my rheumy got there. Admittedly I'm a bit of an odd case as I don't have positive ana.

I was able to mention the possibility of auto-immune disease to the rheumy as it runs in my family but even so it took a few rheumatologists visits and a lot of insistence before we finally found the answer.

Another thing that your doc should check for (with those miscarriages you have had is APS (also known as Hughes syndrome, or "sticky" blood). APS can occur either alone or in conjunction with lupus which is pretty frequent.

I hope that helps a little,
Katharine

 

[Joandublin]

Hi Helen

Welcome to the site but Im sorry about what brings you here :hugbetter: Multiple miscarriages just has to be soul destroying :worried:

I think you have been given good advice about treading carefully around the doctor and not wanting to appear to diagnose yourself. Having said that, you are perfectly entitled to have that meeting with your doctor and engage him with you in trying to see if your symptoms are connected in some way.

So 'girding your loins' is the very best course of action right now. Look on your health as a 'project' which is now a priority in your life. Start keeping written records of your symptoms now as this would be important should you get a referral to a Rheumatologist. Also if you have any rashes, take pictures of them because nine times out of ten, rashes have a way of disappearing the day before any specialist appointment

Katharine mentioned APS (Hughes Syndrome) as something you should be investigated for. Here is a link which explains it. Have a look through it and see if anything rings a bell. Many of the symptoms can mimic Lupus. It can be present as a primary (and only) condition or it can be present as secondary to Lupus.

http://www.hughes-syndrome.org/

When you make that appointment with your doctor, tell him/her that you are determined to see if your symptoms are related. Tell him you are keeping an open mind but that you want to get checked out for any systemic involvement.

The very best of luck Helen. Take a deep breath and go see that GP. If we can help at all please feel free to post and do let us know how you get on.

Take care for now
Joan:rose:

 

[bugsy]

Hello Helen

First of all :welcome: to the lupus site, i hope you find it helpful with what you are going thru.

I hope you have a doctor that listens to you and sends you for further tests etc doing. If nothing else is found you at least need to know why the miscarriages keep happening.

What other symptoms are you having, you mentioned that you had 4 different symptoms.

Before you go to the doctors you could do with writting all your symptoms down along with any questions you have to ask.

Good luck :luck: with your appointment, i hope all goes well for you.

Take care :hug: Jo :hug:

 

[cath]

Hallo Helen,

Welcome to the forum:welcome:

I'm sorry that you have had such a bad time with health professionals. Before my diagnosis I had quite a few negative experiences (one doctor said 'you are a very silly little girl if you persist with this idea that there is something wrong with you' - I was 28 at the time).

However you need them to work out what is wrong with you, and once you do have answers, hopefully you'll also experience more caring attitudes.

I am a little shocked that you have not been offered any investigations after your miscarriges:worried: :worried: . Where do you live? The usual policy is that after 3 consecutive miscarriages you would be offered investigations to try to find out why, such as genetic screening of you and your partner, screening for clotting disorders. They should also be testing the baby for problems after each D&C (curretage). One miscarrage is extremely common, but two consecutive miscarriages rarely happens, and three or more is no longer coincidence but a sign that there is something causing them.

As Katherine said, you should be screened for APS. About 1/3 of people with lupus have APS, but there are many people who have APS alone - ie not as a secondary condition but primary. These screening tests are usually standard after 3 consecutive miscarriages, so as I said I'm annoyed for you that it hasn't already been offered.

The other thing you mentioned was the suspicion that you may have lupus. What symptoms do you have? What are the four criteria you feel you meet? You should ask your GP for a referal to a rheumatologist for a workup. You don't need to say you think you have lupus ( actually don't say this as most doctors will be annoyed if they think the patien is self diagnosing or telling them what to do), but you have every right to say that you have lots of problems which you think might be related to eachother and that you really need to get an answer and some help in treating them.

All the best,

Keep us updated,

X C X

 

[BigSis]

hi there Helen,
I have nothing to add to the good advice you have been given,
just wanted to welcome you. :rose3:

Also I'm sorry about your experience with midwives. Some are so used to 'happy events' that they find anything else very dificult to deal with though that's no excuse.
My own sister had a dreadful experience following a miscarriage (prior to her lupus diagnosis incidently) due to unthinking staff.
Very best of luck to you in finding answers.

By the way my sister has since had two healthy children following diagnosis and monitoring.