Almost 2 years, no diagnosis, please help!

[Lennon_21]

I've been suffering disabling symptoms for over 18 months and am no closer to being diagnosed. I was 19 years old when I was struck by sudden extreme constant nausea, upper abdominal ache, approx 2 inches above belly button. I went from being extremely active to having literally barely enough energy to make the stairs. I always have very cold feet externally but feel extremely hot to me, dizziness, knawing pain in stomach, heat intolerance, weakness (especially in legs), brain fog, inability to sleep unless I take sleeping tablets.

I initially lost 2 and a half stone in weight, but have managed to start putting some back on by prescription nutritional drinks.
My symptoms are disabling, but doctors I've seen  haven't been able to give any kind of diagnosis.

When I gently push down 2 inches above my belly button, where the pain is, I get these really loud gurgling noises from my stomach.

I had a 3 day heart rate variability monitor which showed no parasympathetic activity during the day, and it fluctuates between sympathetic and parasympathetic during sleep.

The possibility of autonomic dysfunction has been mentioned and I'm waiting for a gastric emptying study to see if I have gastroparesis. But would this cause such debilitating symptoms?
Another doctor mentioned the possibility of POTS and Ehlers Danlos???
I've had thyroid tests, tests for Addisons disease, MRCP, brain CT scan, barium meal, various blood tests and an ultrasound, none of which found anything.
I take the strongest anti nausea medication, but nothing works.
Does anyone have similar symptoms or any ideas what this could be?
Would really appreciate any help!

[Sarahgracesc]

I have mostly the same symptoms. After 30 years of battling for testing, I was diagnosed with MS, Hashimotos, Raynauds, and dysautonomia (likely POTS). I’m still bed bound, but on daily IV fluids, steroids, and mestinon.

I highly urge you to request specific testing: tilt table test and an MRI. Those were invaluable for me.

I hope you get answers soon!

[singingkeys]

Tilt table was negative, but I fainted when the cardiologist gave me a tiny nitroglycerin tablet to kind of edge along the test. Unfortunately, I fainted a minute or two after the nitro. The cardiologist present stated that I do not have POTS, but they did see that my blood pressure and heart rate change sometimes by the second and go up and down on the continual monitors. She stated that it was expected for the nitroglycerin to open up the blood vessels to make them larger and the general response is for the heart rate to increase to make up for it. However, my blood pressure dropped to 90's over 50's and heart rate fell to 40 when I fainted. She said that was a sign that my Sympathetic Nervous System overcompensated and wasn't working properly.

MRI was already done of the abdomen, contrast CT scan of the pelvis and abdomen at the hospital and my primary care doctor requested an MRI scan of my brain. No signs of MS lesions or anything abnormal found.

[Lennon_21]

Thanks so much for all your comments. Unfortunately things haven't progressed at all as specialist refused to do an MRI, even though he still says he can't diagnose gastroparesis once the gastric emptying study is done as I may still have a tumour or obstruction. Haven't had any tests in 18 months, but have an online consultation with POTS specialist in September, so hopefully at we can at least start piecing the puzzle together. Haven't come across any good doctors yet, ones that want to get you better not just get you out the door and tell you it's all in your head. I think that might be half the battle.

[Snickger]

I have many of the same symptoms and have been diagnosed with Neurocardiogenic Syncope, which is very similar to POTS- except that with POTS you can see instant changes with bp and pulse upon posture change, with NCS it takes a bit longer, up to 45 minutes. I've also read many scientific journals, one in which was stated that NCS and POTS are not mutually exclusive and that makes a lot of sense to me.
NCS is harder to diagnose because Drs don't seem to have the patience to test for it, at least in my area. I have a diagnosis but didn't actually have a tilt table test or a test more specific to NCS which is a carotid sinus massage (dangerous if you try on yourself, don't do it!)
These are 2 types of dysautonomia, and with several types possible it is alarming to me how everyone, even nurses and Doctors assume it's all POTS or nothing.
For some reason, the mainstream medical community does not acknowledge something that Naturopathic Drs call AFS adrenal fatigue syndrome. If you're open to naturopathic Drs I would highly recommend going to see one, as they tend to be more attentive and better listeners. Whereas dysautonomia explains 85% of my symptoms, AFS explains 100%. I am switching to naturopathic because I'm so tired of feeling like what I say isn't heard.

[Octo88pussies]

I'm afraid this is very typical of Ehlers-Danlos and similar conditions - i.e. connective tissue disorders.  All the tests come back blank but there's obviously something very wrong.  POTS and gastroparesis often co-occur with it.  It is a genetic condition but it isn't unusual for it to fairly suddenly start causing serious problems in early adulthood or later.  I've heard this story over and over again in the community of people with it, and many of us go through a time when we either think we are going crazy (because what is happening to our bodies just doesn't make sense) or we actually get told by others that we are crazy and imagining it - or both.

I don't have quite the same symptoms - I have temperature control issues, sleep issues, and fainting issues, but not bad digestive issues - but I do have a not dissimilar experience of nothing being wrong on tests and everything being wrong with my body.  In my case it took about 20 years for them to work out that I have hypermobile Ehlers-Danlos syndrome.

It isn't a nice condition but a lot can be done medically to support people with managing the symptoms and improving things for them.

Glad your doctor is aware of the possibilities and hope things have moved on and they've been able to help.

[jockojohnson]

you need to focus on diet all disease starts in the gut look into the anticandida diet .yeast overgrowth is a given with any illness you can do a simple test to detrmine this .leave a glass of water next to your nightstand and when you wake conjure up whatever phlem you have deep in your throat let it drop onto the water without force you want it to land on top and watch it for 30 mins.in 10 min intervals in 10 mins if it grows tenetacals you have yeast overgrowth in 20 if there is a layer floating in the center of the glass you have a more severe overgrowth in 30 if there is heavy sediment on the bottom  you have a pretty severe overgrowth .yeast makes alchohol toxins .it will cause brainfog .it is like when you drink alchol but the alchohol is being made inside your gut.get the yeast under control .also supplement d3 everyone is d3 deficient many are zinc deficient as well d3 regulates all your organs  zinc if it is deficient is directly related to low testosterone .and most important take a good probiotic and eat green vegetables to fule them so they can sustain in your gut .imperative no processed foods or sugar .use stevia as a sweetner and cacao for choclate.they are antibacterial and antifungal and have a calming effect on the body .it is hard to type everything that correlates to this but if you make the neccesary changes you will feel the difference .eat to live you can regain your life .i did and i am .

[M0s3s4]

All diseases do not start in the gut. Many people are born with genetic diseases, heart problems and much more that unfortunately affects the Autonomic nervous system. These diseases attacks the ANS such as Parkinson's, Elhers Danlos and many many more. Dysautonomia affects these systems so you have to manage the symptoms of the disease.  You can't make people think well your sick because of what you est and made your own self sick. That's like saying its their fault.