I'm 24 years old male. I have this illness puzzle that I can't solve for 5 years now. I really hope you can help
Since 18 I suffer from all kinds of symptoms including periodic bilirubin elevation. They do not come all together, and I can't really get the relationship and the final diagnosis, as some doctors state that it's Autonomic Dysfunction, while others - Gilbert's syndrome. Or maybe it's a mixture of both?
The triggers can be both psichologic and physical - listening to some heavy bass loaded music is often the starting point. The physical limits of what i need to do to trigger it is very low - usually jumping 4 times in the air is enough to start feeling the symptoms evolve, and the next morning I feel awful. I tried to test my bilirubin at these moments and it's very high.
It usually starts with a pressure in my head, then some vibrations in the left chest part (mild and very fast, like a mobile phone). Then Diarrhea and naussea starts to occur with random dull pains in arms and legs, mostly at joints and muscles.
There are also symptoms that do not come in such sistemathic way, and do not have such obvious trigers. Actually, they ussualy do not come with whose above. These are - itching in all parts of the skin, especially the face; all kinds of random twitches; random dull pains in small parts legs, arms and left chest; itching back pain.
It started then I took a big dose of coffein tablets at my "night studies" and then had a in intense sport execise the next day - I then felt a big heart pain and rate. Since then I felt pressure in my head after a minimal physical activity; random pains in my body and losing a lot of hair. The extreme nausea and Diarrhea came few years later.
So what is this? How can I atleast try to get my self being jogging-able and stop it progressing?
Did the doctors who stated that it is autonomic dysfunction do any tests? If so, what type of tests did they do and what were the results? Also, what type of doctors were these (cardiologists, neurologists, family practice, internal medicine, etc.)?
As far as Gilbert's Syndrome goes, what tests were run? Did you have a CBC and liver function tests? And did those came back normal except for the unconjugated bilirubin, or no? What type of doctor did you see/are you seeing for that?
Full blood tests were done several times, only bilirubin was a concern.
I've seen cardiologists, they did cardiograms several times and they were more or less ok (some small arythmia once), bycicle stress test and heart ultrasound were OK.
Also ultrasound on liver and kidney were done. Stomach checked by tube swollowing. Endocrinology tests (hormones) we OK. They also did a computer tomography on my whole spine.
I'm not really sure about the liver function test, but my family practice doctor sent me to infectional clinic to test for hepatytis, they did a test and diagnosed Gilbert's syndrome after an hour as there was no sign of hepathytis. My family practice doctor also stated that it's Gilbert's because of skin itching, nausea, Diarrhea and elevating bilirubin.
Though all other doctors conclude that it's autonomic dysfunction because all tests are OK (I forgot to mention that I sometimes get thyroid spasms, that's why I went to endocrinologist)
My spine doctor (who is also a neurologist) rejected to treat my mild spine deformation because he was sure I have autonomic dysfunction and that I need to eliminate it first to get clear effective results.
I also went to a private neurologic clinic for a unique test (atleast in my region) that they do, it's called autonomic dysfunction test. They measured my brain activity, breathing, skin temperature, heart beat etc. The conclusion was that "ANS functional regulation has dysfunction features with an expressed PNS influence domination". "ANS lability is increased with tendention to SNS".
Thought they said, that this test is quite unaccurate and there is even no need to repeat it.
I don't really see any doctors anymore as I don't know whom should I see and what to ask.
Though I think I'll go to see my family doctor to ask about the liver function test and maybe repeat it.
Though I still can't stitch all parts together and understand how should I live to make things better.
I'm really leaning towards the autonomic dysfunction, but I don't know if it is able to influence my bilirubin?
I'm not sure where you are because it doesn't say in your profile. There are clearly defined tests for autonomic dysfunction but I can't tell from what you've posted if the tests you were administered were legitimate tests for autonomic dysfunction or not. The results that were given to you are not stated in a way that is standard/typical for the results of autonomic testing that I've ever heard of. It's especially bizarre that you would be told that the test is inaccurate and not to repeat it. Was this just ONE test, or a battery of tests? Sorry, I'm not sure if I can help much if this isn't testing that I'm familiar with at all and/or you're in a region without access to the type of testing with which I'm familiar. I'm sorry about that.
As to whether autonomic dysfunction and the bilirubin would have anything to do with each other, it seems pretty doubtful. You might have better luck consulting a doctor on the site. Have you asked about this in any of the Expert Forums? Those have actual physicians responding rather than patient-to-patient support and they might be able to provide you with further insight.
Rather than "reinvent the wheel," I'm going to give you links to a series of threads that include discussions of various autonomic tests from past conversations we've had here on the forum. Once you've read through those, and the links included therein, if you still have questions I'll be happy to try to answer them to the best of my ability. Please realize that autonomic is not widely available yet, and that people sometimes have to travel far across their country (or across the globe to other countries) to find fully-outfitted autonomic testing clinics if they need a full battery of autonomic testing. Realize also that *most* dysautonomia patients DO NOT need every autonomic test that exists. There are "partial" autonomic clinics that serve the needs of a great number of dysautonomia patients who only need some of the tests.
I just wanted to check in and see if you'd had a chance to read over any of that information and if it had been helpful to you at all. I hope you will let me know if you still have questions; that was just a starting point and I figured we could address your questions in more detail from there.
Thank you Heiferly
I just seems getting too deep into this topic gets me depressed so I don't really want to go all it all over again, especially because whether it is gilberts or dysautonomia, the threatments are mostly the same - less stress, good eating habits and so on... anyway I think I should just go on to Yoga again and see what happens.
Anyway some better threatment advices would be very helpful because most of you probably went through alot.
Yesterday though I just listened to some music that immidietly made me feel sick, started with head pressure, heart vibrations, now I have nausea and muscle pains. This is a typical symptom cycle.
Note that I probably have a PNS domination as stated by tests I did.
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