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1,471 Posts
Hi Mem 
Welcome to the Forum. Im so sorry that you are feeling so poorly and frustrated with your Rheumy. Okay....where to start....
First of all with regard to your first Rheumy's comments on your being too flexible as a child - dont just dismiss this out of hand. There is now strong evidence to suggest that hypermobility in children can have a serious impact on their lives and has all the hallmarks of a connective tissue disorder. See this link for more information
http://rheumatology.oxfordjournals.org/cgi/content/full/40/5/485
Secondly the fact that your current Rheumy has already stated that she believes you have a connective tissue disorder and started you on Plaquenil is, to my mind, more than enough information for you to sit down and have a serious discussion with her. Im sorry that the Plaquenuil didnt work out for you as it is the base line drug for most people with any kind of connective tissue problems, including Lupus. Plaquenil is known for upsetting stomachs and many people start taking it slowly in small doses to increase their tolerance. Most of the gastro side effects go after a few weeks although everyone is different with regard to medications. There is an alternative to Plaquenil called Mepacrine (quinacrine in the USA) which is an older anti malarial drug and is used less often these days. However it can be prescribed but it needs to be got from a compounding pharmacy. It might be something worth considering and worth a chat to your Rheumy as an alternative to Plaquenil.
Thirdly with regard to this blood test 'that didnt mean you had the disease it is connected with', it sounds to me like you may have tested positive for the Lupus Anticoagulant. This test actually doesnt test for Lupus (confusing, eh?). It tests for a condition known as Anti Phospholipid Syndrome (also called Hughes Syndrome). This is a blood clotting disorder and can sometimes be present along with Lupus or can be a primary condition in and of itself. The two tests they run are Lupus Anticoagulant and Anti Cardiopolin antibodies. They usually run the same tests again several weeks apart for confirmation purposes. Sometimes they can appear positive fleetingly (with no known cause) and not again so thats why they have to test several weeks apart.
However having these antibodies doesnt mean you will be diagnosed with APS either. Usually there has to be a clotting incident before a doctor will diagnose with APS. Here is a link which explains the condition. Have a look through it and see if anything rings a bell for you:
http://www.hughes-syndrome.org/
Fourthly, why are you ashamed to say you looked at the name of your blood tests? Please remember that it is important that you, as the patient, are as informed as you can be about your health and asking questions of a doctor is nothing to be ashamed of. You should definitely stiffen your spine for a good conversation with that consultant! I would suggest that you start keeping a written record of your daily symptoms and also get yourself informed about connective tissue disorders (of which Lupus is one). This site is a great place to get information. Just before your appointment, summarise your record and tell your Rheumy that you need to discuss your symptoms, what might be causing them and what symptom relief you can get if you havent yet got a diagnosis (although having CTD is a diagnosis in itself by the way). There are other drugs that can help with relieving inflammation such as Non Steroid Anti Inflammatories (NSAID's). There are a huge range to choose from and your Rheumy might prescribe something for you. Although be warned, some of them are hard on the tummy as well.
Be honest and up front with your Rheumy. Tell her that your symptoms are leaving you extremely debilitated and let her know what you are prevented from doing because of them.
Take a picture of your rash when it is present and show it to your Rheumy and dermatologist. By the way a dermy can diagnose Lupus through a skin biopsy so its good that you are going down that route as well.
It would be good for you to check out the criteria for Lupus. Here is a link to it on this site. Again, look at the information and see if anything rings any bells. Sometimes things that seem unrelated can be all connected together:
http://www.thelupussite.com/forum/showthread.php?t=33123
Finally can I say that getting a diagnosis of Lupus can have ongoing repercussions. For one thing, it is impossible to get life assurance or mortgage protection. Could I suggest therefore that, as you are so young, you might consider getting all this done now before you get any diagnosis? I dont want to frigthen you or anything but insurance companies are extremely cautious and do not generally take known risks.
I hope I have been of some help to you. The bottom line is that you need to take a deep breath and steel yourself to go forward. Autoimmune disorders are very complex and often people are years getting a diagnosis. You have to stay determined to get to the bottom of your health problems. You are far too young to be feeling the way you do and the sooner you decide that you are not going to stop until you find answers, the better it will be for you. Think of your health as a priority project and deal with it that way. Keep records of everything, get to know as much as possible about what your body is telling you, when it hurts, when you are fatigued, when you get rashes, etc. Lots of people with Lupus are photo-sensitive for example and exposure to sun can bring on rashes as well as other systemic symptoms.
Make sure that your Rheumy checks your urine and Blood Pressure as well at your appointment. If she doesnt then I would be concerned about her.
At the end of the day if you are not happy with her you can possibly talk to your GP about this and see if he/she will support you in a new referral. By the way if you have a good GP you could make an appointment with him/her and get him to find out and explain what testing has been done and what the hospital are saying at this time.
The very best of luck and let us know how you are getting on.
.....and you thought your post was LONG! LOL
.
Take good care
Joan:rose:
Welcome to the Forum. Im so sorry that you are feeling so poorly and frustrated with your Rheumy. Okay....where to start....
First of all with regard to your first Rheumy's comments on your being too flexible as a child - dont just dismiss this out of hand. There is now strong evidence to suggest that hypermobility in children can have a serious impact on their lives and has all the hallmarks of a connective tissue disorder. See this link for more information
http://rheumatology.oxfordjournals.org/cgi/content/full/40/5/485
Secondly the fact that your current Rheumy has already stated that she believes you have a connective tissue disorder and started you on Plaquenil is, to my mind, more than enough information for you to sit down and have a serious discussion with her. Im sorry that the Plaquenuil didnt work out for you as it is the base line drug for most people with any kind of connective tissue problems, including Lupus. Plaquenil is known for upsetting stomachs and many people start taking it slowly in small doses to increase their tolerance. Most of the gastro side effects go after a few weeks although everyone is different with regard to medications. There is an alternative to Plaquenil called Mepacrine (quinacrine in the USA) which is an older anti malarial drug and is used less often these days. However it can be prescribed but it needs to be got from a compounding pharmacy. It might be something worth considering and worth a chat to your Rheumy as an alternative to Plaquenil.
Thirdly with regard to this blood test 'that didnt mean you had the disease it is connected with', it sounds to me like you may have tested positive for the Lupus Anticoagulant. This test actually doesnt test for Lupus (confusing, eh?
). It tests for a condition known as Anti Phospholipid Syndrome (also called Hughes Syndrome). This is a blood clotting disorder and can sometimes be present along with Lupus or can be a primary condition in and of itself. The two tests they run are Lupus Anticoagulant and Anti Cardiopolin antibodies. They usually run the same tests again several weeks apart for confirmation purposes. Sometimes they can appear positive fleetingly (with no known cause) and not again so thats why they have to test several weeks apart. However having these antibodies doesnt mean you will be diagnosed with APS either. Usually there has to be a clotting incident before a doctor will diagnose with APS. Here is a link which explains the condition. Have a look through it and see if anything rings a bell for you:
http://www.hughes-syndrome.org/
Fourthly, why are you ashamed to say you looked at the name of your blood tests? Please remember that it is important that you, as the patient, are as informed as you can be about your health and asking questions of a doctor is nothing to be ashamed of. You should definitely stiffen your spine for a good conversation with that consultant! I would suggest that you start keeping a written record of your daily symptoms and also get yourself informed about connective tissue disorders (of which Lupus is one). This site is a great place to get information. Just before your appointment, summarise your record and tell your Rheumy that you need to discuss your symptoms, what might be causing them and what symptom relief you can get if you havent yet got a diagnosis (although having CTD is a diagnosis in itself by the way). There are other drugs that can help with relieving inflammation such as Non Steroid Anti Inflammatories (NSAID's). There are a huge range to choose from and your Rheumy might prescribe something for you. Although be warned, some of them are hard on the tummy as well.
Be honest and up front with your Rheumy. Tell her that your symptoms are leaving you extremely debilitated and let her know what you are prevented from doing because of them.
Take a picture of your rash when it is present and show it to your Rheumy and dermatologist. By the way a dermy can diagnose Lupus through a skin biopsy so its good that you are going down that route as well.
It would be good for you to check out the criteria for Lupus. Here is a link to it on this site. Again, look at the information and see if anything rings any bells. Sometimes things that seem unrelated can be all connected together:
http://www.thelupussite.com/forum/showthread.php?t=33123
Finally can I say that getting a diagnosis of Lupus can have ongoing repercussions. For one thing, it is impossible to get life assurance or mortgage protection. Could I suggest therefore that, as you are so young, you might consider getting all this done now before you get any diagnosis? I dont want to frigthen you or anything but insurance companies are extremely cautious and do not generally take known risks.
I hope I have been of some help to you. The bottom line is that you need to take a deep breath and steel yourself to go forward. Autoimmune disorders are very complex and often people are years getting a diagnosis. You have to stay determined to get to the bottom of your health problems. You are far too young to be feeling the way you do and the sooner you decide that you are not going to stop until you find answers, the better it will be for you. Think of your health as a priority project and deal with it that way. Keep records of everything, get to know as much as possible about what your body is telling you, when it hurts, when you are fatigued, when you get rashes, etc. Lots of people with Lupus are photo-sensitive for example and exposure to sun can bring on rashes as well as other systemic symptoms.
Make sure that your Rheumy checks your urine and Blood Pressure as well at your appointment. If she doesnt then I would be concerned about her.
At the end of the day if you are not happy with her you can possibly talk to your GP about this and see if he/she will support you in a new referral. By the way if you have a good GP you could make an appointment with him/her and get him to find out and explain what testing has been done and what the hospital are saying at this time.
The very best of luck and let us know how you are getting on.
.....and you thought your post was LONG! LOL
.
Take good care
Joan:rose:
