:sad:.Hi, Just registerd so hope i am doing this right, Will try and make a very long story short. I started getting aches and pains in my joints and muscles about 6 yrs ago, was refered to a rheumatologist who wasn't very helpful, he asked me a few questions like did anyone in the family have any autoimmune diseases, and i said yes, 2 children with type 1 diabetes and a sister with MS. he checked me over, said i had reticularis on my knees, and what with the pains, i could have lupus, ordered a string of blood tests, one came back borderline positive for antiphospholipid antibodies, took me off the pill and after a second blood test 8wks later it was negative, test for lupus was negative too. i have probably had 3 tests for lupus all came back negative, last test revealed i am menopausle. so the rhuemy said that was the cause of everything. I am sitting here now in so much pain i could cry, could not walk this morning, getting pains all over, joints painfull and stiff, hot sweats, mouth sores, headaches, pain in my chest. keep getting a rash on my chest and very red face. always tired, red lacelike rash, covers my arm legs and stomach, so bad i have to keep covered up,I feel like i have permanant flu, I have doctors appointment tomorrow, but i know he will just say heres some ibrofrofen. I am finding it very difficult 2 do my job, have had time off and know they are losing patience with me. PLEASE can anyone give me some advise, I just want my life back. sorry, i tried to keep it short, thanks for any help you can give. June,
new to this
1 - 16 of 16 Posts
Hello June and welcome 
You did very well to sum that all up so concisely. It is so hard when we have been ill for a long time with a long list of symptoms to even make any sense of it, let alone sum it up.
Many of your symptoms are quite typical for lupus though they could also belong to some other disease as lupus is known to be the great imitator and can be so varied it is very hard to diagnose.
I don't know what kind of doc you're seeing tomorrow? I would certainly make sure you don't back down. I know plenty of women who are menopausal and who have no trouble getting about and are not in pain!! You know your body and you know that something is wrong.
If possible I would try a referral to another rheumy but this time making sure you see someone who specialises in auto-immune diseases (not all do). Diagnosis is often very difficult for people who have negative bloodwork (the bloods may catch up with how you're actually feeling later...). Unless your rheumy is very experienced you will be unlikely to be diagnosed unless you have strongly indicative bloodwork along with clinical signs. Another thing that might be worth trying is seeing if you could get a skin biopsy done as that can be helpful in diagnosis but for me that is really a latter step. First of all you need a rheumy who is taking your concerns seriously even if he can't put a label on them right now.
People can get help and treatment even without a firm diagnosis so do keep fighting for it. It is definitely not time to give up!!
Other things I would do - Keep a clear list of symptoms (symptoms diary), take photos of any rashes you may have (they love to disappear the day you see the doc), read up on the diagnostic criteria and alternative criteria here under "not yet diagnosed" and see if they fit and if there are any that you may not have thought of as being linked.
hugs :hug:
Katharine
You did very well to sum that all up so concisely. It is so hard when we have been ill for a long time with a long list of symptoms to even make any sense of it, let alone sum it up.
Many of your symptoms are quite typical for lupus though they could also belong to some other disease as lupus is known to be the great imitator and can be so varied it is very hard to diagnose.
I don't know what kind of doc you're seeing tomorrow? I would certainly make sure you don't back down. I know plenty of women who are menopausal and who have no trouble getting about and are not in pain!! You know your body and you know that something is wrong.
If possible I would try a referral to another rheumy but this time making sure you see someone who specialises in auto-immune diseases (not all do). Diagnosis is often very difficult for people who have negative bloodwork (the bloods may catch up with how you're actually feeling later...). Unless your rheumy is very experienced you will be unlikely to be diagnosed unless you have strongly indicative bloodwork along with clinical signs. Another thing that might be worth trying is seeing if you could get a skin biopsy done as that can be helpful in diagnosis but for me that is really a latter step. First of all you need a rheumy who is taking your concerns seriously even if he can't put a label on them right now.
People can get help and treatment even without a firm diagnosis so do keep fighting for it. It is definitely not time to give up!!
Other things I would do - Keep a clear list of symptoms (symptoms diary), take photos of any rashes you may have (they love to disappear the day you see the doc), read up on the diagnostic criteria and alternative criteria here under "not yet diagnosed" and see if they fit and if there are any that you may not have thought of as being linked.
hugs :hug:
Katharine
Hi June
Sounds as though you are having areally rotten time. I just wondered how recent was your last lupus test as things can change over time. Have you been tested for aps? Katherines advice about taking photos of rashes was excellent, they are vital to aid diagnosis.
I hope all goes well with with your doctor tomorrow. Let us know how you get on
Deb
Sounds as though you are having areally rotten time. I just wondered how recent was your last lupus test as things can change over time. Have you been tested for aps? Katherines advice about taking photos of rashes was excellent, they are vital to aid diagnosis.
I hope all goes well with with your doctor tomorrow. Let us know how you get on
Deb
thank you so much for your reply, I am only seeing my GP tomorrow to try and get a referal back to the rheumatologist, who i last saw nearly 2 yrs ago My GP is worse than the rheumy so don't think i will get very far. I forgot to mention i also suffer from allergies, don;t know if that's got anything to do with lupus. thanks again. it's so nice to have someone to talk to. x
high blood peassure
Hi, Thanks Katherine, deb, and Karol, for your advice, I saw my GP today, He didn't refer me back to the reumatologist, but is sending me for blood tests first thing in the morning, one of them being ANA, and RF. also fasting lipids, and a couple of others, he took my blood pressure 4 times, I have dangerously high blood pressure. 142 over 102. is refering me to the chest clinic straight away. so although not good, i am pleased that finally i may get to the bottom of why i am feeling so ill. thanks again for your help. June xxx.
Hi, Thanks Katherine, deb, and Karol, for your advice, I saw my GP today, He didn't refer me back to the reumatologist, but is sending me for blood tests first thing in the morning, one of them being ANA, and RF. also fasting lipids, and a couple of others, he took my blood pressure 4 times, I have dangerously high blood pressure. 142 over 102. is refering me to the chest clinic straight away. so although not good, i am pleased that finally i may get to the bottom of why i am feeling so ill. thanks again for your help. June xxx.
Hi June,
Good luck with the tests, I hope something shows up to explain why you are feeling so dreadful. I'm glad the GP is taking your BP seriously too.
Did he not run the Anti-Cardiolipin and Lupus Anticoagulant bloods again? It would be an idea, because they may show something this time. Perhaps you can mention at the chest clinic that you were borderline positive with those before.
love
Lily
Good luck with the tests, I hope something shows up to explain why you are feeling so dreadful. I'm glad the GP is taking your BP seriously too.
Did he not run the Anti-Cardiolipin and Lupus Anticoagulant bloods again? It would be an idea, because they may show something this time. Perhaps you can mention at the chest clinic that you were borderline positive with those before.
love
Lily
heart attack
Hi. Just thought i would let you know how i'm getting on, was suppose to go to the chest clinic yesterday, because of pains, but ended up in there last saturday, had a heart attack, so still no closer to finding out if i have lupus or not, they didn't say what caused it, on medication, and feeling a little better, take care. x
Hi. Just thought i would let you know how i'm getting on, was suppose to go to the chest clinic yesterday, because of pains, but ended up in there last saturday, had a heart attack, so still no closer to finding out if i have lupus or not, they didn't say what caused it, on medication, and feeling a little better, take care. x
Oh my goodness ((( June))) ! I am really sorry this has happened. I can only hope that your ill health will be properly addressed now. Sounds as if your GP has a lot to answer for. Have they put you on any meds ?
Keep in touch won't you and all the best for a speedy recovery and successful treatment.
Hugs
Clare
Keep in touch won't you and all the best for a speedy recovery and successful treatment.
Hugs
Clare
Hi June,
I am sorry to hear your latest news. I hope the medication and some eventual lifestyle changes will keep you from having another heart attack.
Your story is definitely a lessen to all of us to take chest pains seriously.
Take care,
Lazylegs
I am sorry to hear your latest news. I hope the medication and some eventual lifestyle changes will keep you from having another heart attack.
Your story is definitely a lessen to all of us to take chest pains seriously.
Take care,
Lazylegs
vasospasm
Hi, heart specialist said my heart attack could have been cause by something called vasospasm, just looked it up, and it's associated with lupus, very interesting. anyway i'm feeling alot better now, have got my drugs to take, and going to try and have a good rest. take care everyone. xxx
Hi, heart specialist said my heart attack could have been cause by something called vasospasm, just looked it up, and it's associated with lupus, very interesting. anyway i'm feeling alot better now, have got my drugs to take, and going to try and have a good rest. take care everyone. xxx
1 - 16 of 16 Posts
