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Discussion Starter #1
hi my name is twiggy242002,
i am 24 and still waiting to be told if i have lupus or not..... good news is i get told on tuesday the 14 of april 2009.

i have been having alot of pain in my hips for a long time, i have been to the doctors for years over it and they did nothing, the pain has now spread and i have pain in most of my joints, i was refered to the rheumatology department about 8 months ago.... a month ago i found out i have osteoporosis and thats whe the doctors noticed a rash from my knees to my feet and had ordered a load of tests to be done as they think its lupus.

im fed up of waiting i have a life as we all do to get on with...
i have a boy turning 5 on wednesday and i want to be in top form for him when my self and his father take him out for the day and i know the pain is going to take over :sigh: i dont want to keep taking painkillers :worried:

sorry about this i have friends to talk to but i dont think they understand. thank you for listening to me :)
 

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elisabethm
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:welcome:Twiggy if you do end up with being told you have lupus then this is one of the most supporting sites that you will get.There is allways someone on the site to help with questions that you have Also if like me at the moment i am haveing a flare and when you come on the site even just for ten mins there is allways someone to wish you a speedy recovery.As for your sons 5thBirthday take the pain meds and have a great day out :hapbirth:to your son Best Wishes Elisabeth
 

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Discussion Starter #3
thank you Elisabeth

i have been reading alot and have seen the support and it is great that there are so many people that are going through the same thing and that support each other....:)

i will try and have a great day on wednesday with my boy, with his dad is another question altogether :lol:. i hope you are doing well and your family. take care and im sure we will talk again soon x x
 

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Hi Twiggy and welcome to the Forum

I hope you manage to enjoy the day on Wednesday with your son. If I can give you any advice its to try and stay ahead of the pain by taking your painkillers regularly from at least the day before. Much better to try and be on an 'even keel' than trying to chase away intense pain and end up ruining your day.

I wish you the very best for a good appointment on the 14th April. What blood tests have you had done do you know? Dont be terribly surprised if you dont get a firm diagnosis on the 14th. I dont know your history but sometimes it can take a while for a Rheumatologist to confirm an SLE diagnosis. It can have a big impact on your life, e.g. life assurance, mortgage insurance, etc. Its a good idea to get these kind of things in order before getting a diagnosis if thats possible.

Welcome again and I hope you enjoy being here and the support you will get.

Take care for now
Joan:rose:
 

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Hi Twiggy,

Welcome to the site.

Good luck with your appointment on Tuesday. I hope the blood tests give some indication as to what is going on with you.

Have a great time with your son on his birthday. Seeing his joy might help keep your mind off your pain.

Take care,
Lazylegs
 

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Hi Twiggy,

A warm welcome to you and best of luck on your up coming appointment. Please let us know how things go and have a great time on Wednesday with your son.

Hope to get to know you better. Join us in the chat room sometime.:wink2:
 

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Hi Twiggy,

Welcome to the lupus site. It is nice to meet you.

Good luck on your Tuesday appointment. I will be thinking of you.

Joan is right about pain pills. Staying ahead instead of chasing the pain is better pain control.
Have a fun time with your son in his birthday.

Take care,
Lyn
 

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Discussion Starter #8
Joandublin;541665 said:
Hi Twiggy and welcome to the Forum

I hope you manage to enjoy the day on Wednesday with your son. If I can give you any advice its to try and stay ahead of the pain by taking your painkillers regularly from at least the day before. Much better to try and be on an 'even keel' than trying to chase away intense pain and end up ruining your day.

I wish you the very best for a good appointment on the 14th April. What blood tests have you had done do you know? Dont be terribly surprised if you dont get a firm diagnosis on the 14th. I dont know your history but sometimes it can take a while for a Rheumatologist to confirm an SLE diagnosis. It can have a big impact on your life, e.g. life assurance, mortgage insurance, etc. Its a good idea to get these kind of things in order before getting a diagnosis if thats possible.

Welcome again and I hope you enjoy being here and the support you will get.

Take care for now
Joan:rose:

thank you Joan

the blood tests that have been done are to check my vitiman D, my thyroid functiond , anticoagulant, lipid and antibodies.

they have found something but im not sure what :eek: i hope you are well x x
 

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Discussion Starter #9
thank you all for you kind words, i will jump ahead with the painkillers, tho i have noticed they are not doing as well as what they were a year ago...

thank you all again and take care of yourselves :)x x

Twiggy
 

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Twiggy, I am waiting for a firm diagnoses also. I know I have an auto immune but do not know what it is . I am in the process of getting a new rhuemy. I am curious as to what your rash is like, because I recently had my feet and ankles swell up and now have a red mottled looking rash about six inches above both ankles. The rash is under the skin though not on top more like broken blood vessels. It does seem to either itch or perhaps sting slightly. does this seem like what you have? Thanks Teri
 

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TERI A;541814 said:
Twiggy, I am waiting for a firm diagnoses also. I know I have an auto immune but do not know what it is . I am in the process of getting a new rhuemy. I am curious as to what your rash is like, because I recently had my feet and ankles swell up and now have a red mottled looking rash about six inches above both ankles. The rash is under the skin though not on top more like broken blood vessels. It does seem to either itch or perhaps sting slightly. does this seem like what you have? Thanks Teri
Hi teri, the rash is like red bloches from my knees to my feet, ive had it for a while but it comes and goes. its weird i dont understand it. i also have a rash across my nose and cheeks but it is very faint.

i just had a doctor call and she said i have to go for more testing as there was only one antibody that showed up :worried: im feeling all confused and dont know what to do or think. oh well here comes more testing....
 

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Hi again Twiggy

Can you find out what exactly they are testing for and what 'antibody' showed up? Most likely it was anti nuclear antibody (ANA) which, if positive in a high enough amount, would warrant further testing. A positive ANA doesnt mean you have Lupus but it does mean that its a possibility. A positive ANA can show up with other conditions and even a proportion of the 'healthy' population can have a positive ANA as well.

I know its all very confusing but the more questions you ask the more informed you will become.

Whatever it is I hope they can get the tests carried out soon and that they might give you a clearer picture of whats going on.

Take care
Joan:rose:
 

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Discussion Starter #13
Joandublin;541890 said:
Hi again Twiggy

Can you find out what exactly they are testing for and what 'antibody' showed up? Most likely it was anti nuclear antibody (ANA) which, if positive in a high enough amount, would warrant further testing. A positive ANA doesnt mean you have Lupus but it does mean that its a possibility. A positive ANA can show up with other conditions and even a proportion of the 'healthy' population can have a positive ANA as well.

I know its all very confusing but the more questions you ask the more informed you will become.

Whatever it is I hope they can get the tests carried out soon and that they might give you a clearer picture of whats going on.

Take care
Joan:rose:

hi joan,

my doctor said that they tested for a few but one was on the boarder line but she didnt say what one. i will be calling the hospital again to ask them more questions as they said they would be taking care of it all and not my doctors....

sorry if i am not being clear enough with everything else going on im starting to fall back down emotionally as there is so much more than all this and it just all getting to me. sorry again i hope you are well

take care twiggy :flowery:
 

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Hi again Twiggy

Dont fret too much:hugbetter: It takes a lot of time to understand the complexities of these diseases and it must be especially hard when there are other things getting you down.

Try and enjoy tomorrow as much as you can. Turning five is a big deal ;) I hope that rash on your legs doesnt become too bothersome.

Pop back in when you get a chance.

Take care for now
Joan:rose:
 

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thank you joan, i plan to have lots of fun today and give my boy a good time ;)

may i ask anyone does anyone get a high pitched noise in their ears??

i hope every one has a good day or to the best they can cope with :)
 

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hi guys just to let you all know that we had a wonderful day and that we waked about 7 miles.

i did notice that while i was walking in the sun i had a a rash cover my whole body, it was red and blotcy, it did dissapear when i got into the shade.

also the joys of walking killed my hips, knees and feet but i managed the day with out painkillers :).

it was a great day tho and i will look forward to doing it again next year :)

hope you all had a great day too :grouphug2:
 

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The Other Illinois Tammy
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Twiggy,
Hi and welcome to the site. I wish you all the best with your test and would wish lupus on anyone. I am glad that you are looking for answers and not just thinking oh well it is a pain must of done something. I hope you fine the site helpful and friendly.
 

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Hi Twiggy

Glad to hear you had a good day :) You asked about a high pitched noise in your ears. It could be tinnitus which can be associated with inflammation and connective tissue disease. It is definitely something you should bring up with your rheumy.

Also - just a tip - if you want to ask a separate question than your original one its a good idea to start a new thread because your second question can easily 'get' lost in your first thread. You might get more responses from starting a new thread about your high pitched noises on the Symptoms Forum.:)

Take care for now
Joan:rose:
 

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Hang in there. And look for alternative therapies. Herbs and energy work like Reiki can do wonderful things for Lupus or whatever it is you have.

Fapus
 
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