[mookiem]

Well Hello everyone,

My name is Jenny, I am 26 years old.I have been married for over 4 years and I am lucky enough to have one beautiful son and a little girl due in Feb 09. I have had problems from about the age of 14 but it was always put down to me being overweight, depressed, moaning etc.. I started to think that everything I was feeling was in my head and something was very wrong with my mind. However, when I fell pregnant again things got a lot worse and finally after changing GP surgery's the Dr said there was a real problem and sent me to a consultant at the hospital. Well after she had talked to me she was pretty certain it was Lupus, so sent me for loads of blood tests. The results are back and have come back mildly positive so there is something going on that is not in my head. It has been a complete relief but its very scary. Until three weeks ago i had not heard of Lupus.

So that's a bit about me. Hello to everyone

Jenny

 

[Joandublin]

Hi Jenny

Welcome to the Forum. Congratulations on your pregnancy but Im sorry to hear you have been unwell :hug:

You have come to a great place for advice, support and information on all things Lupus related. Do you know what bloods were mildly positive? Its a good idea to get informed about the various blood tests and to get copies of your results.

Have you actually been formally diagnosed with Lupus or are you waiting on more tests? Many people with Lupus find that their disease gets worse during pregnancy (although there are others who have the opposite experience and tend to flare up after pregnancy). Does your obgyn know about your current health situation? If not do make sure that both doctors are communicating and keeping an extra eye on you.

Im sure you have lots of questions and we will help you all we can.

In the meantime, welcome again and I look forward to getting to know you.

Take care
Joan:rose:

 

[Clare.T]

A warm welcome to the forum Jenny !

It's always worrying to get a diagnosis of lupus and especially tough when you'll have a lot on your mind already with the new baby on the way. The sense of relief is very understandable Kudos to this GP and to you for changing doctors.
There's such a lot that could be said but I'll stick to a couple of points.
First, many people live perfectly normal lives with their lupus well controlled and they don't post on forums because they have no problems. So don't go jumping to worst scenario conclusions.
Lupus affects people very differently.

Second, most women with lupus have perfectly normal pregnancies and healthy babies, with no more problems than healthy women. All the same lupus pregnancies are considered high risk because there is a higher rate of pre eclampsia for example. So I hope you will soon be seeing a consultant obstetrician for a thorough evaluation and to make sure they keep a special eye on you and the baby. You might need to keep on at them about this need, as it is all too easy to slip through the net. Communications between specialists and departments are often very poor and other people are overworked and or inefficient.

The main thing for now is to make sure you get the best care you need for the pregnancy. You might feel better after the baby is born - lupus can be worse during pregnancy, but if you can get to see a rheumatologist soon after it might be a good idea

There's a wealth of information and advice here from personal experience and knowledge plus understanding support so please feel free to ask about anything. I suggest not scouring the internet as you will soon feel overwhelmed. There's also a lot of rubbish out there. Nobody needs a lot of information at first and you can get all you need here ' pre- digested' so to speak.

So take heart !

Bye for now
Clare

 

[LolaLola]

Hello Jenny, Big Welcome to you. Such exciting times with the baby on the way.
You will soon learn about Lupus, and I am so glD YOU NOW HAVE A GOOD gp.
X Lola

 

[mookiem]

Thank you so much for your replys, just nice to know i am not alone.

I have not been formally diagnosed yet. What happened was i went to the GP about certain things that were bothering me and have done for years. He had some blood tests done to see what my joint pain was. He found out i had a lot of inflammatory which he thought was abnormal so sent me to a consultant at the hospital. As soon as i walked in she mentioned lupus, she ran through a long list of things that i just keep saying yes to, hair loss, skin problems, joint pain, depression, constant tiredness and so on. I had never linked everything together. She sent me for blood tests. She said that she was going to give me an injection into my hip to help with the pain, this was planned for the 23rd Dec. I went for the blood tests and was called in by my GP as they came back abnormal. When i went to the appointment he said that my lupus tests had come back as positive although only mildly. He said he wanted me to get hold of my midwife to let her know about the results so she could get me a consultant appointment to check on baby. Then i get a letter this morning for the rheumatologist i saw a few weeks back saying they have changed my appointment to see her from 23rd Dec to next week. So i will be seeing her and having my injection all in one go. It is pretty scary to be honest.

Well i did not mean to write all that was just going to say thanks to everyone.

Jenny

 

[Joandublin]

Hi again Jenny

Im sure you must be full of anxieties at the moment especially not knowing exactly what your blood test results were. Its great that you have an early appointment next week because if it is Lupus then the sooner treatment gets started the better.

It can be difficult to diagnose Lupus unless there are very clear clinical as well as blood markers. There is another condition similar to Lupus which is called Undifferentiated Connective Tissue Disease which many people will be diagnosed with given their symptoms and blood results. A lot of it is fairly academic though as the underlying diseases are pretty much treated the same and UCTD can go on to develop into a Lupus Diagnosis. I dont want to confuse you - I just wanted to let you know some possibilities that might be discussed with you next week.

Try not to worry too much (easier said than done I know). The good news is that you have found this site and there are so many people here with experience, advice and information that can be shared. You are certainly not alone :hug:

If you have any questions or need any advice about your appointment next week feel free to ask. Its always a good idea to write down any questions you might have for the consultant by the way. Its so easy to forget things when you are there

If you want any information on blood tests or anything else on Lupus then check out the main part of this site as well.

http://www.uklupus.co.uk/

Take care and talk to you soon
Joan:rose: