View Full Version : Hello,new to this,need advice.

03-18-2011, 10:31 AM
Hello, my name is susanne I'm going to be 33 in a couple of weeks. I started out with back problems many years ago. Then had a misscarage in 2005,then in 2006 had a preemie at 29 weeks,at 25 weeks my water broke and I remained in the hospital for 4 weeks tell my miracle surviver came weighing 2 in a half pounds. After that I noticed pin dots of blood on my chest and on both arms. There so small but there weired, when I press down on them and stretch the skin it goes away. Then when I let go the blood slowly comes back. Then after 3 months later returning to work had throbing pain almost like a pulsating pain in different parts of my body. Then developed neck problems. Stiff neck hurt to turn at times, feeling swollen in the back of my neck. Pain in my right shoulder down my whole arm. Pain became and every day thing. Back would burn so bad felt lilt it would brake and minute. Everything started progressing I would walk and either my ankle would start to cramp and feel like I dislocated it. Pain in my hands were I would drop things at work. At night I would get itching in both hands. I also get numbness and tingling in both hands. My blood pressure became high and had to go on meds.I got dizzy spells at work were my vision would go to one side following my balance to one side almost fainting but didn't. Started having anxiety all the time and developed a very fast pulse rate. Went to the ER one time leaving worn because of arm pain and chest pain and confusion and dizzy spells. The said it was sinus tachy cardia.I could deal with all the pain and stress my doctor finally gave me a MRI for my lumbar and cervical(neck) they found an annular tear in my lumbar and bulgings of discs and my cervical they found bulgings in my discs along with osephytes (a form of arthritis ) in two of my discs. Turkey said that would explain my neck problems with hand and arm pains. And they said the tear in my back would explain my back problems with the buttocks and leg pains. But the said the pain every where else is possible fibromyalgia,if I'm spelling it right). I could not deal with all this pain any longer while working it was unbearable. Went out on disability. While on disability nothing got better eccept my blood pressure I did not need any more mess for that. Then I got pregnant in march of 2009 at 3 months we went to go see are little one on the ultra sound and :(:: my angle was asleep. Not moving at all. His heart stopped. They had to do surgery to remove him and before they did I demanded another ultra sound. To find out he was gone for two weeks and there was fluid all around him. So I new this had to be done. Still off work still pain then 6 months later I get pregnant agian and at 7 weeks I misscared again but this time I had contractions and I passed it at home.this was 2 months ago. Still off work since 12/01/09. Then obgyn says now this is not normal and I had a lupus pannel test 3-1-11.( My cusin and aunt have lupus)so I got the results and my ANA is at 15 it's suppose to be 7.5 or under Saying ANA pattern homogeneous speckled pattern and the c3 complement 189 it's suppose to be 90-180. Obgyn referred me to rhumatology saying it could be lupus.dose anyone else think this could be lupus or something else. I know I need to ask the rhumetologest but who knows how long before I get in there. So sorry this is so long. It's so easy to vent in writing. Thank you for who's ever time I took from. ;)

03-18-2011, 10:51 AM
Hi Susanne,
Welcome to our lovely large family of the WHL and it's lovely to have you with us.
I'm so sorry to hear about your one child where there was to much Fluid, there's alot of member's on the site had children, some have had miscarriages and Lupus can stop some getting pregnant like myself and i'm 42.
All the swelling and pain moving from one place to another is the Lupus and the fibromyalgia which cause arthritis in the system and Lupus causes the the joints to swell.
I do know how you feel it's terrible as i've got Spondalitis from birth and the Lupus and it as a great old field day with my hips especially the left and all down my leg and i've got trouble with my back and neck but stress is a large benefit to helping it on.
Certain issues you mentioned about the numbness with fingers and tingling plus itching, there's a good chance you may have Raynauds also.

I really hope you see a Rheumo quickly to help as your going through such alot but it will be lovely getting to know you.

Love Terri xxx

03-18-2011, 11:02 AM
Hi Susanne,

Welcome to WHL.
First let me tell you, how sorry I am about your misscarriages.
From what I have read from your post, it does sound like you have Lupus, but to be sure, you have to see a rheumatologist asap.
As for the pain, I too have back pain and neck pain every day, besides the muscle and joint pain.
So you see, you have come to the right place, because we all know how you feel.


03-18-2011, 11:55 AM
Thank you so much for replying to my post I Spelled so many things wrong and some words were not even the words I ment to write. Lol. That's what happens with these iPhones. I for got to mention about my memory,concentration and headaches. Oh well it's all too much,I'm glad I found this forum. I'm sorry to that you can not have children I am blessed to have the ones I have. But now I no I can not have any more. I can't go through any more losses. Thanks agian :)

03-18-2011, 12:03 PM
Hi Susanne,
That's why Debbie and myself say you need to see a rhuemo as quick as you can because it makes your brain go into a slow mode, alot of us cock up with our spelling through it, so don't get worrying about that we all have our moments.lol plus the headaches are another combination.

Actually it's been nice of you to give us your story and what you've been through and going through, vent away and there's so many threads for info, as we all learn something new everyday to help us along.

Terri xxx

03-18-2011, 12:04 PM
Thank you for replying I'm glad people no how I feel the doctors thought I was crazy or something stating I might need mental help. This sucks to be young and feel like I'm in my 60's thanks agian.

03-18-2011, 12:29 PM
I'm 42 and this lot as took me down in the last 3yrs i've had loads of ailments that Lupus can throw at you and never found out till i saw the rhuemo after blood tests i was born with it, so it all connected plus i had manic depression hit me when i was 18 and i have to see a psychiatrist every 6mths for a check up and he's gone mad at how i've suffered when all they could have done was run a few extra tests.

Well you feel 60 i told the blood specialist when i saw him i feel Bl..dy 90 hunched back at times cramped up, muscles spasms god it dow end mate.
I do feel sorry for you and at such an early age, it's no life but there is alot of member's who live with it ok and i do admire them.

You ah no head case so take no notice, god you know how your feeling and what your going through. xxx

03-18-2011, 12:43 PM
Man, I'm sorry too.yeah most doctors are just looking at there paycheck. They can't see the whole picture like they should be focusing on instead of just giving another appointment one after the other with no conclusion and they take forever to run any test. The thing is at times one day to the next there's something new that's why instead of looking they just wanted to med me up. Pain meds,physical therapy,pills to make you slow so u feel in a zone. Just to shut me up. I'm sorry sorry u had to deal with this your whole life. HUGS

03-18-2011, 01:02 PM
Good one susanne, i quite agree the paycheck at the end of the week and here in the uk if they do a visit and they're forced out you sign a paper for them to claim money years back it was 7 so it's either doubled or it's more.
You will find something happening differently each day, it's like me tonight after tea my hubby washed up because hotwater burns my hands out and i started cleaning the sides off and as i was moving pain was shooting through me i just broke down crying, i'm sure i'm working for severn trent these days. They did 9 bloods on me, then 12 was done then i was admitted to the day unit another 11 done besides x-rays and i told them i'll be needing a blood at this rate, i've only seen my rheumo once and the last time i saw the blood specialist who said i am pleased you've got no clots at the moment for wulfrin [i thought dream on mate where wulfrin's concerned].
It started at 5yrs with me feeling cold, then 14 doing things i had'nt got a clue about, i was having Auttissum then 18 manic depresssion, two forms of epilepsey then at 24 two major strokes bed ridden for 4yrs, then i was left with todds paralasis so i go paralised if i fit and lose my speech, then DVT, then they found out i was born with spondalitis from birth, my backs disfigured and 2 virtibres supporting my neck i've done my pelvis twice fitting and they then topped it when i went to a brain surgeon where through so many drugs and injections they left me brain damaged on the right side, so now i'm topped up well with medication to control my fits/nerves/ anemia/ and now i'm on plaquenil and i just can't cope now and i actually feel like a failure at time with what i've gone through, can't seem to fight this like the rest and other stuff besides.

Large Hugs & Kisses to you mate and i really hope they can sort you out quickly. xxxxx

03-19-2011, 01:34 PM
OMG I'm so sorry you've gone through way to much gosh I can only imagine. You have such strength to Carrie on as u do. And you still find the time to be here for all of us on this forum. That's great you need this to vent to. God bless you and I pray for this horrible disease to soon find a cure. Xoxoxo

03-19-2011, 02:06 PM
Hello -

I am so sorry to hear about your babies,, and this is most likely caused by a diagnosis of Complete Heart Block in the child. I was diagnosed with Lupus when I was pregnant with my second child and I was 20 weeks along. I had had a miscarriage at 20 weeks prior to this pregnancy (one healthy child though that was 3 at the time), and they did not know why, so I can feel your pain. When I was diagnosed they also diagnosed my baby inutero with Complete Heart Block. This occurs by the antibodies of Lupus attacking the baby's heart and causing the AV node to become scarred and not function. We are very fortunate, (We have a lot of faith and believe prayers got us through this difficult time), that my baby was born 100% fine except for the Complete Heart Block. She is now 12 and is completely normal in all other respects. She had pacemaker surgery at 3 and has had two other surgeries. She just recently went through a traumatic surgery where her lead broke and she had to have another surgery to go and get that lead out. She is a beautiful, active, athletic girl that you would never know has a pacemaker. During her last two surgeries we insisted on a plastic surgeon being there to close her so her scars are miminal - you can hardly see them.

I went on to have two more healthy children after her,,, so please know there is always hope! Complete Heart Block is a rare complication,, but if it does occur it is very manageable.


03-19-2011, 04:07 PM
hello sorry to here about what you are going through at 18 i had my first miscarriage then 21 i had my son born4 weeks premature then i had 2 more miscarriages then my daughter she was 5 weeks premature then i had 3 more miscarriages and 7 years later had my daughter born in 1995 9 weeks premature then i became pregnant a year later and at 20 weeks my baby died and i had to deliver him stillborn the pain was so overwhelming that my husband i decided enough was a enough and he had vasectomy i was diagnosed with lupus 3 years ago and am now finding out from rheumi that lupus was probably the cause and if they had investigated my first few miscarriages for lupus i may not have lost my son at 20 weeks and all my other babies i have all of the symptoms you describe and more hope you get more answers soon hugs kim l

03-19-2011, 04:15 PM
hi Susanne! Welcome to WHL. We are so glad that you found us! None of us can give you medical advice but you do need to have the doctor check things out. There are a lot of things going on it your body (as you stated in your initial post) and it is time for someone to put all the pieces together. While you are waiting, once you get a diagnoses (of Lupus or something else) you have now joined our WHL family! We are always here for you and someone here will understand

03-19-2011, 04:56 PM
OMG I'm so sorry you've gone through way to much gosh I can only imagine. You have such strength to Carrie on as u do. And you still find the time to be here for all of us on this forum. That's great you need this to vent to. God bless you and I pray for this horrible disease to soon find a cure. XoxoxoHi Susanne,
I hope your feeling abit better mate, it always sounds a soft question but we do have our odd days of feeling better.

With what i've gone through i just hope i can help other's with info and ailments connnected to it. xxxxx