Undiagnosed illness - Thoughts?

[kustirider2]

Hey guys :) (18 Y/O Female) I'm looking for opinions here; I've had a horrible, worsening condition for almost two years now. It impedes everything in my daily life, and I simply cannot take the whole diagnosing process anymore. I've had tests for so many different conditions, but each time everything has came back fine. I honestly have a ridiculous amount of symptoms (some probably not connected) but somehow they don't correlate into an illness that I could possibly have? Anyway, I shall list what I can at the moment;
. All over body paints, that feels like lactic acid burn (No one is sure if it's joint, muscular etc yet)
. Inability to stand up after bending down onto knees + intense pain.
. Tiredness. To the point where I will have a full nights sleep, and not be able to function/move and will fall asleep in class.
. Any kind of sports activity (running, jumping, even typing) causes lots of 'grabbing' pains in muscles.
. Heart palpitations when breathing in deeply
. Breathlessness
. Occasional pain just underneath rib cage (in the small gap) and down left side, that feels like a stitch but whenever I breathe in, I get a shooting pain all up into my chest.
. A feeling of nausea when lifting my arms above my head (even when brushing my hair)
. Huge sensitivity to cold, often making my hand and feet purple (although I cannot feel heat or cold on my feet).
. Huge insensitivity to heat, as I'll usually end up being burnt in the shower without realising
. Unusual pains and reactions that shouldn't be there. I get quite intense pains from people bumping into me.

There are more, but I'm exhausted at the moment so I'll probably come back later when I'm refreshed.

Usually these symptoms worsen incredibly when it's either cold, or during menstruation. At the moment, I've got leukopenia, which is also causing me to catch colds very easily. I've been tested for some cancers, multiple sclerosis, and some other genetic disorders. They are currently investigating lupus (which I have been tested for, and it was okay), AS, Fibromyalgia and I've been diagnosed with Chronic Fatigue Syndrome. Although I can't help thinking that my symptoms are too serious for either of those last two conditions. Thank you for reading, and I hope someone can help me :(

[kustirider2]

I've checked out Conn Syndrome, and will be asking my doctor about it. I'm actually convinced (since every other organ system, except endocrine and heart, have been checked) that I've got either a thyroid problem or something wrong with my heart. I also have been asked the stress thing quite a lot, but honestly, I am the most laid back person ever. I've never had any kind of stress at all :)

I forgot to mention that yes, I've had so many blood tests done. CBC, ESR and all other general things are fine, apart from I've suffered from Anemia for my whole life. I've also had an MRI of the spine/spinal chord, and the brain, around 6-7 ultrasounds of the abdomen. However, I haven't had any sort of CT scan. I've also had another scan (not sure of it's name) which involved injecting radioactive fluid, and then have a machine spin around me. I think it was to see if the fluid collected around the painful areas.. which it didn't.

At the moment I'm seeing a rheumatolagist (I live in the UK, by the way), and a kidney specialist. I've had a cyst on my kidney since birth, but now it's being seriously investigated as a complex cyst. They've decided to discharge me from that clinic though, as doctors are beginning to blame the kidneys when they're essentially fine.  

I have a few other symptoms that I forgot to mention;
. IBS (Been diagnosed officially, although they don't know if this is related)
. Asthma (Recently been given a evohaler)
. Unusual heartbeat just above my bellybutton - leading me to suspect abdominal aortic aneurysm.
. I was diagnosed with a teeny amount of autism when I was 12. So I was looking for illnesses associated, but to be honest, it's not exactly noticeable which means me thinking that maybe there is something else going on.
Really, I'm thinking heart right now. Would it be wise to ask for a CT scan? Or any other suggestions for what this could be.

Thanks for the support too :) I'm fine, and still surviving so I'm happy.

[Jcrow28]

You might have primary aldosteronism - conns syndrome

[vedang]

ignore the stress and concentrate on your mind and nothing will happen wrong.there is no control on outward world and only control your own word and own orbit.cleanse your own orbit and create the confidence which will give you strength for developing positiveness

[nlk259949]

I am so sorry you are going through all of this!!I have really bad stress and anxiety, and it is causing me a number of physical symptoms. Is there any chance that you have been under a lot of stress before this all happened, or anxiety? I have some of the symptoms that you are experiencing and it is just stress. Hopefully what is going on, is nothing big, and hopefully you will find a cure soon!! I know it's scary to experience SO many different symptoms, and not have any answers. I hope you find answers soon. Will be thinking and praying for you. Things will get better though, I know it. Just stay strong, and really focus on your stress level and what you are eating as well. Foods can play a huge role in how you are feeling as well. Best of luck to you!

[Lisakittie]

Hi:  Wow, although your symptoms are somewhat different than mine (they do overlap somewhat) you remind me of me at your age...with a lot of "perflexing" symptoms and no clear cut diagnosis. Although you did not say it..I "presume:  you have had the regular blood tests, such as CBCs (complete blood counts, ALT, and other liver tests??)...if  you have not already had it, I would highly recommend a thyroid test..(sensitive to heat..not sure if you said cold without re-read) and to consider (especially if you are "Greek" or "Italian" or some other ethnicities too such as Jewish or Arab or Asian) getting tested for "thalassemia"...and if you do get tested for it and you turn out to have "thal minor" and no "thal major" and they tell you that you should NOT have ANY symptoms..they are lying..lol..read the forums on that one..when I also have....also, you might want to check out "Chrohns" which I have read can effect you in other ways than just gastro...(I was once thought to have UC and now I am thinking to look into Crohns instead as it is a little different in that you can have joint issues / arthritis like symptoms and eye pain, swelling to name a few) from my own experience that is all I can share...other than that, I would recommend you get a GOOD internist (an internist has more extensive training than an MD alone) and do not give up..I am "mom age" and I do not plan to give up after being tested for must about everything under the sun...hopefully the good internist you find can at least point you in the right direction of say endo, or whatever..good luck!!