View Full Version : Hello :) A shot in the dark...

06-20-2011, 02:29 PM
My name's Amy. I'm so glad that this sight is here. I know you aren't Dr's etc, but from what I have read it looks as if many of you are at least as knowledgeable, and while only a Dr can provide a diagnosis, I would still be very grateful for some opinions about my symptoms. Thanks:
I will start at the beginning of where I think things began. Have no idea if these symptoms are related, but am gonna include everything(sorry!)
When I was 14 i started to have panic attacks in the evenings. After about 4 years, and having to learn to live with them, i figured out that I was sensitive to caffiene. The day I stopped drinking tea and coffee, the attacks stopped.
When I was 20, I had my first son. When he was about a month old, I got dizzy. This lasted on and off for two years, I took a type of anti histamine which worked wonders) the docs thought it might be meniere's disease, but symptoms were never quite right. Now it only comes on badly when I am stressed or tired. I feel that my brain made new pathways to deal with what happened, as when I close my eyes I still find it hard to balance. However, happily this no longer affects me much day to day.
About 4 years ago (at age 34) I started getting recurrent UTI's, I probably had about 8-10 UTI's in 2 years. At the end of this time, my doc said she thought it was interstitial cystitis, and wanted to give me antibiotics for 6 months. I refused and started taking D-Mannose (supplement). I now still get cystitis if I drink or eat acidy/spicy foods or alcohol, but again, I can live without symptoms if I am careful. Now to the recent stuff.
* I must first mention the extreme stress of the last year. We moved home from abroad, brought a house, I completed a 1 year intensive college course, had all the family over at Xmas, just after having flu and just before my exams, then in February my Mum (the healthiest person I know) was underwent sudden emergency brain surgery, and was diagnosed with terminal brain cancer and given 6-18 months to live. it was a terrible shock, and I am very close to my Mum.*
In March, just a couple of weeks after everything with my Mum, I caught a cough from my son. it was a severe one, and one night my chest started hurting a bit when I coughed. The following night patches of my skin started to feel tender to touch, and I felt quite weak. It got worse, but Ibuprofen helped and I went off to sleep. I woke up in agony on the right side of my abdomen at 2am. It lasted for about 3 hours in the middle of the night. I basically lay there panting, not wanting to wake anyone. In the morning I got up, but felt so weak that I ended up at the emergency room. Blood tests showed that my liver enzymes were 40 times higher than they should have been(hepatitis A, B, C etc came back negative). I had an ultrasound a couple of weeks later which came back clear, and my gastroenterologist basically said that the virus I had had attcked my liver. After a couple of weeks all the pain was gone.
*lingering sypmtoms*. Again. As with all the other things, I seem to have lingering symptoms. The chest pain that I had never went away. I still have it 4 months later. If I drink alcohol, or eat a poor diet, my liver starts twinging(nothing like the first horrendous episode, but still uncomfortable though) and strangely this right chest pain thing seems to get worse at the same time. It honestly feels like a cartilege problem. At one stage I could click the rib! The worst pain is generally when sitting up from a laying down position. And finally I get palpitations. Weirdly. Likey I will have quite severe ones for a couple of months and then nothing for months. I get them a lot more after excercise. I don't see them as related to the chest pain at all. Had them for years on and off. Oh, no one more thing which I do think is probably important. When All the liver stuff was happening, I had a sore throat for 3 weeks, and now sometimes when my liver twinges, the sore throat comes back again. Oh and one last thing -sorry- keep remembering- at the time the liver stuff was happening I had a sort of dry skin rash on my shoulders. It was worse after showering for obvious reasons. Don't know if related. Not had a rash on face, although last year did develop a purpura(sp) on face but got rid of it through the unorthodox method of making it bleed then applying lots of pressure... it went after a couple of months, and about 3 bleeds! Haha.
I think that is it. Sorry it was long, but I had to get it all in. Things are quite settled right now, but I haven't had a drink in a month (I'm not a drinker, but it would be nice to be able to be social sometimes), my chest feels pretty good as does my liver, but if I drink/ eat anything silly, I will be back to the drawing board. I can live with this, but I'm fed up with not knowing what is going on in there!
I came across this website, and thought maybe it's something like Lupus. Just not a clue. Thinking AI, but really at sea here. If you got to this stage, thank you so much for reading, and I would be very, very grateful for your opinion, adive.
Thanks again x x

06-20-2011, 03:17 PM
Hi Amy. Never feel like you need to say you are sorry for a long post. Sometimes there is just so much to say that it takes awhile to get it out.

I am so sorry you are going through all of this! The only thing worse than being ill is not knowing what is making you ill! While I can't say this really sounds like Lupus there are 63 autoimmune diseases besides Lupus. I am going to attach a link to the criteria for diagnosing Lupus but please know that Lupus can attack almost any part of ones body. I am a bit confused by something you said. Did you say you made your liver bleed? I may have misunderstood that because I am a bit brain dead today but, if that is what you said, how and why did you decide to do that? Whether your medical problems turn out to be Lupus, another AI disease or something else entirely please make yourself at home here. This place is not only for those of us with a diagnosis it is also a place where many of us start finding our way to information that will help our doctors figure out what is going on with us.

I look forward to getting to know you better

06-20-2011, 04:23 PM
Hello Amy,

Welcome to WHL and thank you for the nice comment refering we know as much as Doctor's you need to concerning Lupus and what ailments it can bring along with it but you've joined a very close family, where support is always there.

Amy if your symptoms are linked to Lupus...i will point out that Lupus in general just loves stress and depression and it thrieves on it and can make your symptoms worse and you also get cystitis with Lupus but it as to be treated straight away incase it causes anything else.

Amy i've read everything you've said and like tgal said it may be an Autoimmune disorder, i'm adding a link below and you'll need to scroll down to the Liver part and it tells you about Lupus and symptoms with the Liver, i do hope it helps.


((Hugs Terry)) xxx

06-20-2011, 06:40 PM
hi amy,

sorry you have had trouble for so long.
i had problems for just over 30 years before the doctors sorted it out.
may i suggest you take the time to write down your symptoms.
then ask your doctor for a referal to a rhuematologist.

welcome to our unorthodox family.

06-22-2011, 07:47 AM
Hello Amy,

Just dropping by to see how you are since you joined us and please keep we updated when possible.

Terry xxx

06-22-2011, 02:23 PM
Hi Amy, so glad you joined us. I am not feeling so well myself today and keep making typos on my Droid. Stress always brings my flair on. When they come I almost always have a little sign or symptom that tells me I am headed for a flair. Not always mind you. It can show up anywhere on me. It has hit my joints, skin, muscles, gums, inside my nose, lymph nodes, brain, bladder, kidneys, lungs, colon, etc., etc. It usually causes me pain, lead blanket fatigue (as rob describes it), chills, sleep issues, tearfulness, brain fog, etc.

I hope this helps some. Keep record of everything. Get copies of bloodwork, tests, xrays, etc and start a file. It took me a couple years to find a good rheumy. I wish you the best Amy