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

[Jerry_NJ]

Wow, I am very sad to read of the suffering you have experienced and continue to suffe from.

I read you post with a quick scan as I am not qualified to sum up the data and come to a conclusion.  But, I didn't notice any attention being given to allergic reactions.  Think back and look around at what you have around you and are exposed to that may have been new back when this all started.  It could be anything from a piece of furniture to new paint, to plants or something at work on on the way to and from some frequent destination.

I'm just guessing, but given the medical expertise that has been given already I'm sure there is nothing in that area I can add.

Wishing you find the problem.

[Lena85]

Hi jerry thanks a lot, I thought maybe I was allergic to something too like toxic mould or something but it's hard to know what to ask the doctor to test for when it comes to these things. Nevertheless thanks a lot for the suggestion, il keep it in mind!

[MichelleP_3811]

I am not a doctor and can't comment fully on your issue but I would say it seems like you have had a number of tests that I would look into myself if I were in your shoes.  The only thing I will say is I have heard kidney stones can be horrendous so that could have been part of your problem.  Cysts as well can cause issues especially if they continue to get big and/or don't resolve themselves.  I have also heard that people can experience symptoms from thyroid issues without actually being out of range.  The doctors don't acknowledge them unless you are actually out of range but you might want to check out the Thyroid forum here and talk to some people there.  They may be able to help you put things together.  I believe that some thyroid issues are really caused by autoimmune issues.  This might explain some of the fever infection problems you have experienced.  So do go and ask for some advice in that forum.  Finally a systolic reading of 160 is pretty high so if you are experiencing persistent high bp you may want to get that under control though the reading may have just been a result of the stress your body is under or stress just from being sick in general.  But I would really check into the thyroid forum because your symptoms really do indicate some sort of a hormone issue.  Take care.  I really do hope you can get to the bottom of this and feel better soon.  

[gothic_beauty]

I too am so sorry for everything that you have been through. I really am. I know what it is like not to feel well for extended periods of time and to have to put your life on hold because of your health. I know how difficult it is.

Reading over your vast range of symptoms, my first thought was that there is some sort of imbalance in your blood, but it sounds like you have already had numerous blood tests done. That being the case, I was thinking that your problem could be hormonal. Hormonal imbalances can occur for a number of reasons and can disrupt all sorts of bodily functions from heart rhythm to temperature to energy levels. Would it be possible for you to consult an endocrinologist?

Again, I am sorry for your pain. I will be thinking of you, and I truly hope that you are able to get to the bottom of what is ailing you. I'm sorry I couldn't be of more help.

[Lena85]

Thank you Michelle. My cyst on my kidney is 1cm so the doctor has said its insignificant. I've been to 4 doctors and none of them seem concerned about my thyroid until I saw the 4th one who finally sent me to a endocrinologist.
She ran a lot of tests but I still haven't gotten the results I requested from her more than a week ago. Once I do I will definitely post my results on the thyroid forum. all I know so far is she tested for graves and I don't have it.

I've actually always had low blood pressure of around 100/60 so when my blood pressure stayed so high for the first month I was sick. It's now returned to a normal range of 120/70 whenever I've tested so it's no longer of concern. Thanks again for your input it's really appreciated, Lena

[Lena85]

Hi gothic beauty, it really is like putting my life on hold. Not knowing if you'll ever get better is a scary and depressing feeling. I have seen an endocrinologist but the only result she has given me at this stage is that I don't have graves disease.

My gp has tested my estrogen, prolactin etc because my periods have suddenly become irregular but apparently that's all normal.

I'm considering seeing an immunologist as well.

Knowing that someone cares helps, thank you :)

[Lena85]

Hi everyone, just an update. My blood test showed Anti nuclear antibodies 'detected' and it says screened at a Titre of 80 'speckled'. In my previous blood test 2 months previously there weren't any detected. I'm not sure what this means. My doc didn't mention it to me at all

My tsh is now 0.42 which is just within normal limits and yet, I've lost 3 kilos this week. I've had my heart ultrasound back with 'trivial mitral valve reguirgitation' and an ultrasound of my salivary glands showed some small lymph nodes and intraparotid nodes.

Any thoughts would be great, thank you!

[Lena85]

Hi everyone, just an update. My blood test showed Anti nuclear antibodies 'detected' and it says screened at a Titre of 80 'speckled'. In my previous blood test 2 months previously there weren't any detected. I'm not sure what this means. My doc didn't mention it to me at all

My tsh is now 0.42 which is just within normal limits and yet, I've lost 3 kilos this week. I've had my heart ultrasound back with 'trivial mitral valve reguirgitation' and an ultrasound of my salivary glands showed some small lymph nodes and intraparotid nodes.

Any thoughts would be great, thank you!

[Lee2064]

You might want to look into Lymes diseases, not sure but it can show up years after you have been biten, you need to get a test called the west blot test, lots of health units give you the cheaper test which comes back false negative the west blot similar to dna test it will show up antigens that only appear if you have lymes, or lupus throws up many of the similar symptoms or fibermyalgia.  Not sure but likely safe to consider going by your symptoms.

[Lena85]

Hi lee, my gastro suggested i look into fibromyalgia, because I do have many of those symptoms. I'll ask my doctor about your test, thank you.

[Lee2064]

The reason I suggested Lyme's Disease is one of the guys at work we work outside year round started experiencing really sore joints all over, he would get these funny rashed on his body, but we would notice his face would swell and his lips also, lymes if left untreated hits the neurological system and it can affect different people different ways or men and women  differently

[Lena85]

Hi lee I don't have any rashes thankfully. But il def still ask my doctor thank you :)

[Lena85]

Just an update for everyone. So apparently I have all the celiac genes (but not celiac) and I just discovered a tiny pea size lump on my sternoclavicular joint near my neck, my doc wasn't concerned but I'm booked in for an ultrasound anyway. Hopefully this might show why I've had a sore throat for more than 6momths although my doctor doesn't think so. I'm Getting a 2nd opinion this weekend.

[MichelleP_3811]

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

[Lena85]

Thanks michelle

[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]

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]

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]

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]

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.

[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]

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 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]

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!