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]

Yeah I definitely have nothing to loose, I will keep bugging doctors until someone tells me what's wrong. My sanity is wearing thin though! :(

[madamebrianne]

Believe it or not, I saw an episode on the TV show Mystery Diagnosis about POTS years ago, even when I was sick, and did not think I had it. Her symptoms were only somewhat similar to mine, so I blew it off. Mistake!

Anyway, I do not get nausea anymore. I had it for several months in 2008, but it went away, thankfully. I belong to a Facebook group with over 3,500 members and many of them experience nausea daily.

I'm not a doctor, so of course I have on idea if POTS is really your problem, but what do you have to lose? Maybe some time, money, and energy, but to me, it's better than losing your sanity! If you have any left, that is. ;)

[Lena85]

Hi brandi, I think I really need to convince a doc to check me for that since its been suggested so many times. The nausea is my worst symptom everyday for the last 7months, do you get nausea???

[madamebrianne]

Hello,

Please look into Postural Orthostatic Tachycardia Syndrome (POTS). It is a very unheard of nervous system disorder that prevents the body from being able to properly adjust to the pull of gravity. Therefore, symptoms arise, such as: rapid heart rate upon standing, low or high blood pressure, dizziness, fainting, fatigue, sweating, anxiety-like symptoms, headaches, shortness of breath, inability to exercise, digestion problems, etc. The symptoms are endless and vary person to person day to day. Very few doctors are familiar with this illness and often misdiagnose patients.

Please feel free to contact me if you have any questions.

Best wishes,
Brandi

[Lena85]

Thanks michelle

[MichelleP_3811]

Keep at it Lena,  I do hope you can get this figured out.  Best of luck with the scan.