Khris;: Hugs. I hate jumping through procedurla medical hoops! I really hope this next step brings the resolution and relief you need.
Refugee: I'm so terribly sorry for the loss of your sister, and for not spotting this news before. My most heart-felt condolences to you and your entire family. I hope the pain is starting to ease.

Refugee, my sincere condolences. We are never prepared to loose a loved one. I wish you and your family strength. We are here if you'd like a bit of moral support.

Khris, hang in there and stay positive. From the bottom of my heart I caution you not to self diagnose yourself as it can be self destructive. We are here if you need us.

Without ever mentioning my thoughts to my doctor, he found enough evidence to refer me to a specialist who deals with autoimmune diseases (of which, Lupus is one). Because of my age, gender, family history and symptoms- Lupus is the most likely cause. Dealing with the reality of that is not self destructive, it's empowering.
I have an appointment with the rheumatologist scheduled on Tuesday, so we'll see what he says.

Khris- I'll be thinking of you. I hope you get some answers quickly.
is Lupus hereditary?

It's not strictly hereditary, but auto immune diseases in general tend to 'run' in families.

I know you all are thinking that I am freaking out about a borderline anemia result, but the way that my test result came back indicates a chronic disease, not that I am not eating enough iron. Autoimmune diseases are so hard to diagnose because the test results often are variable or show nothing. They can be positive one time and negative the next.

Khris...I"m not thinking you're "freaking out" I think you're frustrated and wanting answers. I feel for you.
I just asked about it being hereditary because of the comment you made about "because of my age... family history..."

the borderline anemia could also be a result of the fact that you've had so much bloodwork done in a short period of time. i'm hoping you find peace soon.

Khris I hope you have some answers soon. Things like SLE can definitely be hard to diagnose for certain - more of an "art" than "science".

My own NSFF whinge is that I finally took myself off to a medical centre the other day to get some blood tests since I have been feeling quite uncustomarily lethargic and unmotivated lately. Went back yesterday for results and found out I'm B12 deficient to the point where I have some red cell macrocytosis - meaning the bone marrow is starting to get affected. I need to find myself a decent GP cos this medical centre guy has just told me to take tablets to correct it. Never mind that its rare for non-vegans to get this deficiency, that it takes about 3 years to develop & that the only tablets you can get are one-tenth the recommended dose to correct deficiencies. Now after doing some more reading I'm also worried I've got chronic gastritis, pernicious anaemia or some other weird & wonderful cause of b12 deficiency.

To top it all off when I asked him to print out the results so I could take them home and look over them carefully (instead of the 5mins you get in the consult room), he printed out 6 pages but forgot the one that actually has the B12 results on it. Grrr! I'm going to go back there today and request it. I really need to find myself a good GP down here!

Oh Tam- good thing you are a doctor and can be your own advocate! I hope you can find a good doc, and soon.

That's true Khris, and sometimes knowledge can be a dangerous thing too, as I guess you realise from your research as well. Sometimes it's hard to be objective about your own symptoms. A good GP is worth their weight in gold, but oh so hard to find. I don't know whether to keep looking around for one, or go straight to a gastroenterologist. Even being a doctor the healthcare system here can be difficult to navigate, I'm sure it's no different over there either!

Eventually, you will need a good GP, but if you think a GI will be able to deal with your immediate problems then I would start there. It often takes an extended amount of time to get into a specialist (that is the case here, anyway). The specialty clinic that I see with my kids wouldn't allow us to make an appointment until their files has been sent and a doctor had reviewed them- and then the appointment was a couple months out. Of course, I called my rheumatologist on Friday and got an appointment for Tuesday. You just never know.

OK well I got a diagnosis- Fibromyalgia.
I'm actually more scared of this diagnosis than Lupus, but I knew if it wasn't one it was the other. I have a lot more research to do until I will feel comfortable with this, but it's good to have a name at least.

Oh wow, Khris. That's a diagnosis that would scare me too! However, having a name for what is causing all your problems is a huge first step, and this knowledge, along with good docs and medical care, can help you finally start battling your symptoms.

{{HUGS}} to you. I will be thinking of you and sending you lots of P&PT.

ETA: Yublocka, I hope you find a good GP and get some good answers about the causes of your low B12 results. Elly, I'm so sorry to hear of your health issues. You face your challenges so positively, you are a great role model! Refugee, from the bottom of my heart I send you sympathy for the loss of your sister. I

Oh Khris, I have just come across this thread, life can be so cruel. I hope medicine soon catches up with your condition. I will be thinking of you and all the other YLF'ers who are having a difficult time. This thread really drives home the need to appreciate life when times are good.

Khris, I commend your strong spirit and your ability to face your challenges with as much information as you can instead of ignoring it.

To all my fellow YLF members who are facing difficult challenges...you'll always have a voice here to gripe or vent or cry it out. Our hearts and ears are open to you!

Khris--- I know that fibro is harder to treat, but on the plus side-- it isn't eating your organs! I am glad you got a diagnosis and I know everyone here is still sending you lots of support as you adjust!

Tam-- I hope you are able to find out what is going on with you and treat it. Finding a doc can be really difficult.

I hope all the other NSFFers are doing well this week.

I was finally feeling better after my car accident and medication change. At the end of last week I even got a really good workout in in the pool after a week or two of screwy ones. Well, today I woke up in pain. I can't get into my doc right away, but I would say it is a kidney infection. I feel like I got punched.

I sure hope things are looking up for people!

Oh Khris - I don't know what to say. Good to have an answer,and really I am glad for your sake it isn't SLE.I hope the doc you saw has some god suggestions of ways to combat fibromyalgia - not easy to "treat", but I'm glad your organs are safer!!!

I went back to another doc and he isn't testing me for pernicious anaemia, but is testing me for Coeliacs. I must admit I'm a bit skeptical as I don't know why a malabsortive issue would result in one specific deficiency, but I'm playing along for now. I will be devastated if it turns out I'm intolerant to my beloved bread. In some ways I'd rather it be PA. We'll see. My vitamin D levels are also undetectable at the moment - something the first Dr didn't even bother to tell me. That could be playing a role in the not-feeling-fabness too. Damn long Melbourne winters and working too much so I get minimal sunlight!!!

Elly I hope you get your pain sorted out too. It can be frustrating to feel like you take one step forward and two steps back, can't it?

Just want to share a message of care and concern, hoping that this positive and supportive refuge can help lift your spirits.

Love and warm fuzzies all around. Hoping everybody's FFF (feeling fab factor) gets to hit the upswing soon.

Khris, I am so sorry to hear about your diagnosis. I just wanted to stop by to send you all the positive thoughts and support I can. I have been dealing with rheumatoid arthritis for the past 6 years (I know it's not the same as fibro) and it took me a while to come with terms with the fact that I have a disease that will be with me for the rest of my life. I haven't been on the forum much lately as I'm trying to focus on myself and my family but I still read as much as I can every day.

I don't want to sidetrack this thread, but I did want to offer you a resource should you ever need to vent (even though you really don't know me from Adam ). Sometimes it is nice just to have an empathetic ear.

I think educating yourself is a great start. I have had to fight for some of my treatment options and the more you know, the more empowered you will be. It took a while for me to realize that doctors just do the best they can but you really know your body and how you feel so don't be afraid to work with your doctor in your care. Together, you'll be a better team. Hugs to you!

Big fat ((hugs)) to everybody.

Khris, I've been following this thread and I am glad you atleast know now (hugs). Not knowing is always worse than whatever the diagnosis may be. I'm hoping and praying you find a good doctor who is willing to go the extra mile to work with you.

Tam, I saw cuts and bandages on your arm in your last post. Did you have a tumble off your bike? That B12 deficiency sounds nasty, take care of yourself (hugs)

Elly, I am so sorry you have to go through all this (hugs)

Refugee, I usually don't know what to say in times like these but I just want you to know that most of us understand what you are going through and hope you can feel the upliftingly good and warm vibes of everyone here (hugs)

Dani, I've missed you (hugs)

Khris, I am glad you have a diagnosis, but sorry that you have to go through this. I am a bit embarrassed to reveal my ignorance, but could you explain what fibromyalgia is?

Dani, good to see you!

Thanks to everyone.
Tam- the specialist spent maybe 10 minutes with me and told me to just keep taking the medicine that my GP prescribed- nothing else. I am reading, and know that I want a much more comprehensive treatment plan. I was just surprised to be in an out of his office so fast that I didn't ask any questions.. Maybe I will give them a call next week.

Laura- it's a chronic pain disorder that causes widespread pain, sleep disturbances, and fatigue (among other things). Here's a quick read on it:

https://health.google.com/health/ref/Fibromyalgia

Laura : My mom and a friend have it. It took a while for my mom to be diagnosed because sometimes there are no clear inflammation markers. We ended up at a Harvard teaching hospital where the specialist gave the us best description I have heard, ever ; it is like having rheumatoid arthritis of the soft tissues.

Khris, is there anyone else you plan to go see about the fibromyalgia now that you know what it is? From my limited knowledge the keys to management are more than medication, including physical therapy such as physio and cognitive behavioural therapy.

Vani yep I had a spill nearly 3 weeks ago. Been a bit bruised and battered since, but I'm slowly on the mend!