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Advice on Dealing with Undiagnosed Illness

I apologize if this is not the norm, but this site helped me, and I wanted to help someone else. This isn't a question. It's more of advice on dealing with undiagnosed illness. It's not gold, but hopefully it will help someone else. I lived through it. I lived! Here are some tips that got me through.

1. Have faith in yourself. - Plenty of doctors may be all too ready to tell you you're confused, incorrect, delusional, wrong, depressed - you know your body. Listen to it as best you can. Then find a doctor who is willing to listen to you.

2. Have faith in your body. - Your body wants certain things at certain times for a reason. If you need sleep, sleep. If you need apple juice, drink apple juice. It sounds dumb but listen to your body and what it's asking you for. It may help you get to the bottom of things. Ex. I know this is so bizarre, and might be nothing but hoopla ... take it for whatever its worth... One night during my illness I woke up with the most insane craving for licorice and root beer. I tried going back to sleep. I woke up again several minutes later, still with the most inexplainable craving I've ever had in my life. It was not normal. I woke up my husband, and begged him to go to the store (yes in the middle of the night) to get some licorice and root beer. I ate and drank to my heart's content. Later on, I had to find out why on earth my body had craved these things. It turned out (later, after I was diagnosed) that I'd had swelling around my brain. Turns out certain herbs commonly used to make licorice and root beer naturally help decrease swelling, and have even been used to treat encephalitis (brain swelling). I was SHOCKED to find this out, and can only know that my body was telling me something that night.

4. Find a support system wherever you can. Whether it's a friend, a spouse, a hotline, don't be picky. Don't be afraid to ask for help! Throughout my illness, certain people in my life showed up at certain times. But sometimes I did have to ask. Nobody likes asking for help. But if you don't ask for help, most people think you don't need it. If you don't have a support system, don't feel bad, lots of people don't. Try a community outreach program or local church, get creative! Most communities have general hotlines that will either talk you through stuff, or connect you to the right resources who can. During my illness I even called prayer hotlines. They helped! Reading and posting in forums like these can help. Just don't overdo it. You are seeking life and wellness, and sometimes staying buried in the depths of the internet is not the best thing to do for yourself. Ask friends and family to help you research. My friends are some of the smartest people I know. They also knew me better than the doctors. They helped me research, and helped me bring ideas to my doctors to discuss.

5. Keep searching. You may stumble into a doctor's office who doesn't really care. Get out. Drop ship. Cut bait. If you have a relationship with a doctor who hasn't found what's wrong with you in a long time, who doesn't seem urgently interested in finding out what's wrong with you, try another doctor. I know how exhausting it is to keep "starting over" with new doctors. But you have to keep looking. Have faith, keep searching. It's hard work, but you can do it if you have to. To make it easier, I wrote out the whole story of my illness in bullet points in a Word document, and printed it out and took it with me to dr appt's. Some looked at me like I was nuts. I never went back to those. Some appreciated and were grateful for having such an easy summary to look at and see what they could come up with. Those were the doctors I stuck with.

6. Try finding a medical student. It was a medical student who actually officially diagnosed me and then recommended to the doctor he was interning for that I be admitted to the hospital immediately. That student saved my life. He was the only brain still pumping "new enough" to be able to think outside of the box. Most of the doctors I saw were so calloused, overworked, or drained that they didn't think like that anymore. Because of my weird symptoms, they just put me in the "not my specialty, not my problem" category or the "if a+b doesn't equal c then she's not really sick" category. An MRI of my brain finally showed what was going on. An MRI I'd asked 2 other doctors to prescribe.

7. If they tell you you're just depressed... Well, this for me was the most frustrating part of the ordeal. I was prescribed Cymbalta over and over by doctors who didn't believe me, wouldn't listen, who told me that my constant fever, memory loss, slurred speech etc was just signs of major depression. I loved my life before I got sick! I knew that depression had certainly not caused my fever. Yet over and over I was told that it might. Crazy, right? I was surprised to actually see firsthand that yes, there are lots of doctors - not everywhere, but at least there were in my area - who are just wanting to quickly give you a prescription or a pill, and they may even get nasty with you if you don't do what they say ... Run if they are rude to you. Change doctors. Keep looking for help. Giving you a pill to dumb you down is not a cure. That said.. if there is the slightest chance you're depressed, don't let a medical doctor do the diagnosing. See a psychologist, something I would recommend doing during an undiagnosed illness anyway. It is a personal time for you to vent, feel vindicated, breathe, cry, feel safe. It is not only important in helping find out if you're illness is caused by depression, but it is important as a release  - cleansing your emotions can only heal you. That said, when I was wailing to a friend about another Cymbalta-prescribing doctor, she started laughing ... She was laughing because in her own medicine cabinet were tons of sample boxes of Cymbalta. She had just gotten over cervical cancer, that had to be surgically removed. The boxes of Cymbalta were from before she was diagnosed, when she just "didn't feel good," and before they did any gynecological testing. She had cancer, and had been told it was just depression. So, yes, it happens. Don't take it personally.

8. Do whatever simple things you can to help yourself. Spend some time listening to your body, and figure out what is healthy for you to eat, then eat it! For me it was garlic, spinach, olive oil, chicken breasts, sweet potatoes, eggs, fresh fruit, etc. Those were my main staples while I was ill. There were others, but you get the idea. I stopped eating all processed foods, and only ate "real" foods, that hadn't been pushed through a machine or mixed with chemicals or additives. I also drank tons of water, I mean tons.

9. Know that you are not alone, and it can happen to anyone. I never thought it could happen to me, I was too smart, I used to think well if I ever got that sick I'd just tell doctors to fix me and make sure they listened! Well, when you're sick and broken down from physical ailment, you don't always have that kind of strength or snappiness. When you're sick you just want someone to heal you. Just know there is nothing wrong with you as a person. It literally can happen to anyone. During my illness a friend told me Oprah Winfrey had gone through her own mystery diagnosis situation. Oprah Winfrey! As sad as it sounds, that comforted me a great deal. I knew that if something like that could happen to Oprah, who could have any medical staff in the world at the snap of her fingertips, it could happen to anyone - including me.

10. And finally, and I hope this doesn't offend anyone, but ask Jesus to heal you. I never had faith before, but this illness brought me to my knees. I stuck with that verse "Go... your faith has healed you." Again, I'm not trying to impose anything on anyone, I'm only sharing what truly helped me. Good luck and God bless.
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Avatar universal
Hi There,

Not really too down with the religious element that you'd mentioned in your advice, but as you allude to, I'm sure you're more than appreciative of that being a subjective thing. I wanted to say however, that your quest to have your symptoms investigated thoroughly (and a most admirable quest too), and to be treated for them, sounds very, very similar to the one that I'm presently enduring.

Here's my story: http://www.medhelp.org/posts/Undiagnosed-Symptoms/Cogntive---Non-Specific-Problems/show/1050502

I was seeing my family doctor about these problems initially, that I'd been seeing for years, and although I was never really the happiest with his 'bedside manner' so to speak, I never had much cause to change doctor, having been pretty healthy up until the end of last year.

As I'd already seen one neurologist earlier in the year, which didn't result in any progress with regard to getting to the bottom of my symptoms (he told me my problem was psychological), the aforementioned family doctor wasn't then willing to refer me to another neurologist, and started to hint at depression being the cause, and prescribed me antidepressants. I'd realised at this point, I was going to be up against a brick wall, so changed doctor.

The new doctor who was attached to the same practice, and I'd seen once or twice over the years previously, was much more empathetic, and willing to acknowledge something was physically wrong with me. On the back of this, she refereed me to a send neurologist. This appointment, was pretty much as useless as the referral to the first neurologist, as I was told all my symptoms were down to depression! Starting to feel like there's a bit of a neurological conspiracy working against me now.

Returning back to my doctor, not really knowing where to turn next, she was great and did me another referral to see an endocrinologist. Now, whilst this referral hasn't resulted in getting a diagnosis directly, the consultant actually listened to me, and couldn't believe I'd not been probably neurologically investigated, all this time, aside from having a solitary MRI scan - and not even a single blood test performed. On the back of this, he's now refereed me to a third neurologist who's a personal friend of his, asking him in the strongest terms possible, to help me get a diagnosis for my symptoms.

Now whilst I've not yet had this appointment and got a diagnosis, it infuriates me greatly, that if I'd just accepted what I'd been told initially, I'd still be sitting here today, going out of my mind with worry as to what was wrong with me, with no imminent chance of getting investigated. It's only as a consequence of my tenacious pursuit of getting some answers, that hopefully I'm now on my way to getting a diagnosis.

It's very sad that a lot of people, not wishing to question the supposed professional knowledge, abilities and authority of their doctor or consultant, have to suffer in silence for months, years, or even worse, due to the unprofessional, unempathetic, and thoroughly reprehensible treatment they receive at the hands of the medical profession, when all they want is help with something that's ruining their life, or even putting their life in serious jeopardy.
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