[emmy70]

Hello everyone on this form ,

I'm emmy , 38 years old , 2 boys .
I'm Dutch and live in Cairo at the moment .

My bloodtest are : esr high but not extreme .
crp higher .
postive ANA .
anaemia .
anti coagulant lupus positive . APS

syntomens are : malar rash .
photosensitivity
mucosal ulcers
serositis
unire ( high puss cells )
neurological disorder .
arthritis .
haematological .
astma
allergic
pregnancy 2x times hellp syndrome .
extremly tired .

last 2 years < 7 times a lunginfection , 6 times a pulm emboli .
liver infection .

I like to know if this is lupus or not .
thank you all for your help .

emmy

 

[pollianna]

Hi emmy, welcome the the boards. I was just wondering how you got the bloodwork and what the doctors say? I don't have much experise in cases other than my own but many here are more experienced than me and will be along shortly.

Have you seen a Rheumy?

 

[emmy70]

the blood work I have this from the bloodtest that they took from me every month
I'm seeing a lungarts , cardio , immuum dr .
my dr say that they think of sle because of all the medications that I'm taking and having a lunginfection and pulm emboli .
and because of the symtomes that I have .

greetings emmy

 

[Maia]

I can't say for sure, but it sounds like based on bloodwork and symptoms you could meet the criteria for an SLE diagnosis. Do you know how high the ANA titre was? Did they run other bloodwork for the ENA's (things like SSA or anti-Ro and SSB or anti-La?)

I hope you are already receiving some treatment for your clotting problems/APS & hopefully soon some treatment for the possible/probably lupus diagnosis.

HELLP is a scary thing to have while pregnant - it sounds like you ended up OK with two healthy boys though so congratulations are due! HELLP is a more severe and crisis kind of pre-eclampsia for those who aren't familiar with that term...

Welcome to the site!

 

[emmy70]

since the first embolie I'm taking warfani but still having clots they dont know why did al lot of test but they cant find out why untill now . and other medications like prednison , imuran , plaqunile . concor because of a very high blood pressure and chest pains .

they all tell me it is SLe but if i read the criteria it always says low platelt count and white bloodcell with me they are high if I'm sick .
Yes al the other test and symtomes say SLE but im still ????
my ANA was 1.360 but this was 2 years ago .

and yes my boys are fine thank god .

greetings emmy

 

[pollianna]

Emmy, you don't have to fit into all of the criteria to fit the Lupus diagnosis. i am sure by the sound of your drugs in respect to your symptoms that your treatment is good. it does sound like Lupus. My white blood cell count is high when I am sick too xxP

 

[onetay]

Emmy,
It sounds like you have something going on for sure. As you may know lupus does cross symptoms with other problems. I am no doctor but it does sound like you have some kind of lupus going on, please do remember I am not a doctor so I don't count. I am interested to find out what the doctor you are seeing thinks is going on? Are you seeing a rhuemy yet? You should be a little forcefull with the doctor and tell them you need an answer and some relief. I do hope you start feeling better soon, and keep us posted as to what is going on please. You can also visit the chat room and get instant feedback if you would like.

 

[debatat]

Emmy, I am sorry for all that you have going on. It sounds as though your aps has been extremely difficult to control. A lot of your other symptoms do sound a lot like like lupus, although I am not a doctor. They don't usually give you a diagnosis of sle unless they are sure. I ahev lupus and sticky blood, my platelets are always high and my white cell count varies. I have just been to see a lupus specialist in london and I did ask him about my platelets being high and he said it was a sign of inflammation. I really hope that things improve for you soon.

Take care

Deb

 

[emmy70]

Thx you all so much for your answer .

Here in Cairo dr dont speak to the patients but to your husband or if its the other way around they speak to the partner .
never tell a patient that they are ill always tell them they are fine nothing wrong and everything is going to be find .
even if you are going to die that's there way here
in Holland ( where i'm from they are the otherway around strait to the point .
but no im here and cant see my dr in Holland .
I hope in de summer but we will see
I have to deal with my dr here and they never agree with eachother
also a problem because they think it needs to come from them not from a nother dr
I hope you still can follow what im talking about hahah .

so the symtomes they say are a lot of SLe but some not as I sad for high white bloodcell
counts and platelets if i tell this this is a think normal when you have a chest infections that your white bloodcellls are high they look at you what ???? because here you dont speak to you dr he will tell you what's wrong not you a nother problem pff .

I went to a reumatologi dr he told we when i was realy very ill
there is nothing wrong with you , do some arobics jump around and you will be fine .
I was like what?????? are you totaly crazy ???
so went to another one she told me oh you need a chemo right away
so what will you do in a case like this .


thanks so much for you tips
i know you are no drs but i think that in europa and usa they know more about a illnesse and when it is not right . and if someone has the same symtomes
that's why i wanted help and to hear from others if they also have this test results or not .

thxxxxxxxxxxx
greetings emmy

 

[pollianna]

Ohh my Emmy. I am so sorry you have to deal with this carry on. I know what the Egyptians are like lol I asked in Luxor, one man when is the bus coming. He replied Insha allah :lol: ( God willing) Lovely people but everything seems to be no problem and in the hand of God.

Is there no European Dr in your are of Cairo or maybe somewhere else that you can see?
:hug:

OOh, Emmy, have they given you any medication?

 

[LolaLola]

Dear Emmy,

A big Welcome to you. You deserve proper support and treatment. If there is any way you can get to a really good Doctor please do it.

SLE is an odd illness, there are so many combinations of symptoms, and blood tests are never the whole story, just part of it.
x Lola

 

[doris999]

HI Emmy,
I thought i would have had an easy diagnosis, NOT.
It is complex, and frustrating. You just have to keep pushing for the answers. If you are not happy with your DR then find another one, like i did.
We now our own bodies better than anyone, so push, push
Big hugs
Sandra....

 

[KarolH]

Hi Emmy,

Wanted to welcome you to the board and I agree with the others that you may want to look for a new doctor who is European and not Egyptian.

I wish you luck moving forward towards diagnosis so that you can get on meds and start feeling better.

Thank God your kids are ok. Join us in the chat room sometime.:wink2:

 

[emmy70]

Hello ,
Thx all .

A Dr from Europe here in Egypte .... in my dreams maybe .
and yes everything is Inshaallah ( if God wants ) but I need the help now .

they are doing test , and my test results are always out of ranges .
I had a very good dr ones but ... he had a heart attack and didn't work again . My cardio very nice lady ... she's got SlE here self and is still doing reseach about this because they only learn the basic things in there study ...
that what she has told my .
sometimes I say it's like a bad movie

I have medication , but some of them are not always the same . like prednison if my lungs are bad and cant breath good I'm having high doses of prednison , giving my self injections of this .
I have oxgen next to my bed , having weeks that I cant come of from this and then having weeks that it's going great .

but the tirednesse this is ..... always begin tired . having a good night sleep and always wakingup tired .
after a few hours need to sleep again .
I was a very actieve person , doing a lot of sport but now ....
if I can I walk the track 2 rounds that is about 1 km but feels like I have done the marathon ...
having pain in my bones everyday
waking up and need an hour to get moving . I always say I feel like someone of 70 years old realy .

greetings love emmy

 

[Pink Pearl]

Hi Emmy, Welcome to the board.
Do you have family in Netherlands or Europe? Could you possibly go stay with them until you get your health issues straightened out? Friends maybe?

It sounds like the woman doctor is your best bet right now. With all you have going on, exercise to the extreme would be my last suggestion.
A diagnosis of lupus is based on meeting 4 of the 11 criteria with OR without lab work. You do NOT have to meet all the criteria.
You are much more patient than I that you are able to handle all the garbage you have been told by the doctors.

I wish you good luck to get your health issues straightened out.
Sally