Could someone suggest what to do please?

[Lena85]

In feb this year I started to feel like I had had the flu for a month, I had EXTREME fatigue. I was convinced I just was run down but I couldn't function.

* early march, it was the second day of my period and I was in unusually severe pain, severe nausea( my periods were much improved the last year or so). I visited my doc after passing a blood clot the size of a golf ball. My period was extremely heavy also. He gave me painkillers and told me to visit hospital if things got worse.

* the next night I had a chocolate coated ice-cream and literally as I was eating it all I could taste was metal. I had a friend try it and they said it was fine. 5 seconds later I started vomiting for about an hour non stop. I got severe pain in the same location on my left side and felt like it was the worst pain of my entire life. I was rushed to hospital and given morphine. They did blood tests and found a white cell count of 21. My kidney function was below 60 so they gave me antibiotics for a kidney infection.  

* for a month after discharge my symptoms got increasingly worse. The antibiotics did not help. I got very high fevers over 38, my blood was measured at the doc to be 160 on top. My heart palpitations were extreme and I would wake up drenched in sweat with severe nausea, shaking badly and wanting to vomit. 

* My gp tried 5 different antibiotics as they did not know what was making me sick, and a second blood test showed normal kidney function (week after visiting)around this time I  I  went back on the gluten in April as the only food I could tolerate was bread and fruit ice blocks. my fevers went away after a course of flagyl (5th antibiotic they tried) - keflex and amoxicillin did nothing.

* I also did an ultrasound of both the reproductive and general abdomen. They found a 'slightly contracted' gallbladder which was of no concern to my doc. They also found two 1cm cysts on my liver, a 1cm cyst on my left kidney. 

* since then I've done multiple ct scans and ultrasounds with no findings. a ct in June showed the remnants of a small stone and I passed some stone crystals and blood in a urine test.

* I saw a gastro who gave me an endoscopy and colonoscopy and found only blastocystis a common parasite that doesn't usually cause such severe problems. I was treated with 5 weeks worth of antibiotics and the parasite tests came back negative. It has been more than 3months since my treatment and the nausea isn't gone. 

* I've had many blood tests - all have been Normal (I've had at least 7) the only findings were slightly low iron (I've always been low), vitamin d of only 12 and low zinc levels. My thyroid results the last 4 tests have showed a tsh of 40, 35, 0.14 and currently returned to 30. I have seen an endocrinologist who doesn't believe this is significant ESP. Since at the onset of my 'mystery illness' my thyroid results were all normal.

* heart ultrasound

* since this incident I have been extremely sick, here is a summary of my symptoms in order of occurrence, up to fatigue are my everyday symptoms, the rest come and go:

*  severe consistent nausea - especially with bowel movements
* severe heart palpitations & flutter
* stabbing pain on left side and sore rib cage ( I can't sleep on it)
* chest pain
* neck pain
*sore throat 
*dizziness
* constant urge to poo but will only do small amounts sometimes 5 times a day (narrow stools) other days I will do 5 normal amounts but with semi soft stools
* fatigue
* mood swings
* bouts of insomnia that come and go
* entire body aches 
* always feeling hot
* fevers between 37.5 and 38 that come and go for 2 or 4 days and then go away. 
* chills
* sore lymph glands
* sore breasts 
* sensation of chest on fire with nausea
* headaches 
* 12 kilo weight loss
* breathlessness with exertion
* stomach cramps
* slight drooping of right lip and numbness (sometimes)

At the moment my life is on hold, I can't work and although I'm being positive I'm getting increasingly more stressed because it seems like no one is willing to really take the time to listen to me. I believe that perhaps I have some underlying condition that's been responsible for all the health issues growing up and now. I'm fed up being sick and I just really want to be well, get off this roller coaster of illness and live a happy life. 

Thank you,
Lena

[Lena85]

Will do thank you

[madamebrianne]

I hate to say too much, because, of course, I'm not a doctor. But, I will say, your symptoms are alarming enough, based on what I have learned so far, to get checked.

Please keep me updated, and take care!

[Lena85]

Hi brianne,

Thanks again, I will give them a ring and ask if they do visits to Sydney.

My pots symptoms include dizziness/lightheaded ness upon standing, nausea, palpitations, chest pain, constipation, abdominal pain, tiredness, migraines, low blood pressure, high heart rate if I stand in one spot for longer than 2 mins (not sure about this one).

I often have the sensation of my body being bitten by insects and there's nothing there. I've never told a doctor because they all already think I'm insane...

Thank you again

[madamebrianne]

Yes, that makes sense. POTS is usually secondary, meaning it is caused by or goes along with another illness. I just haven't been able to put all of the pieces of my case together yet

What other symptoms do you have? My legs ache all the time and feel so heavy when I'm going up the stairs. Hate it!

Anyway, here are two doctors in Australia who are familiar with POTS:
    
Professor Murray Esler
Heart Centre
Alfred Hospital
Commercial Road
Prahran
Melbourne
Victoria 3181
61 3 9276 3263
Autonomic Laboratory

Dr Chris O'Callaghan
455 Upper Heidelberg Rd
Heidelberg
Victoria 3084
[phone]

Most people with POTS have to travel hours and hours away to get proper diagnosis and treatment, as very few doctors recognize or aware of the condition. I drove 4 1/2 hours, which wasn't too, too bad. Hope this helps!

[Lena85]

Hi Madame, I am in sydney, Australia. I feel I have all the symptoms, not just what people are telling me. ATM the last week I have a new symptom which is aching pain in my thighs and legs as well as my pelvic region. I don't think all my symptoms, such as this new one, are POTS, I believe it's some other illness causing the POTS if that makes sense.

THANK YOU for your help, I really appreciate it!

[madamebrianne]

Where are you located? I may be able to help you, if you would like the help. Do you feel it's possible you have POTS, or do you just consider it because people have mentioned it? POTS or not, I feel for you. No answers = misery.