Connect
← Return to Desperately Trying to Get Diagnosed
Discussion
Desperately Trying to Get Diagnosed
Autoimmune Diseases | Last Active: Mar 6 10:40am | Replies (97)Comment receiving replies
Hi. All I can do is offer advice. First, create a diary of all your doctor visits including contact information, and obtain copies of all your tests, you are entitled to them. Keep them all together, in order, and bring them to next doctor's appointments...the reason is some doctors are lazy and don't contact the last doctor or review last tests unless it's put infront of them. They get too busy, not that they don't care. This will avoid being re-tested for some stuff you don't need. One tidbit I learned was if you are low on potassium, please look at test results for that, you will get muscle twitches and nausia. And, if you take potassium you must take a magnesium with it or else the body won't absorb it. It took many doctors and scoping and damage to my esaphagas until one doctor finally said..you are low on potassium. Then another, after about a year to say...take magnesium with potassium to digest it. Wow. That took years to figure out. I finally learned to keep a diary of my doctor visits and tests after I was tested for Lyme's disease five times. Now, doctors need to benchmark ANA levels, and space them a couple months apart, that's standard. Now, holistically, you can help with brain fog by going gluten-free, and avoid processed food with chemicals. Try whole foods for a while, see if it makes a difference. Read every label. Two diets come to mind to try, the Keto diet and the LAC diet. Benchmark any improvements or failures with that in your medical diary. Some autoimmune diseases are drug-induced, or environmentally triggered with a heredity of a minor immune predisposition. So with that, taking daily multi-vitamin, extra vitamin C, D can help your body help itself. Immune disorders tend to suck vitamins out if your system faster than you can eat the foods that contain them. I buy the gummy versions of vitamins and call it 'my desert', lol. But please read tests about vitamin and electolite levels, if you don't see them, have next doctor get that done for you, and you can ask lab to send you a copy to your house, again, you are entitled to it. I will sit on-line and find out what every test means, again...I learned the hard way...sometimes waiting for doctor to do the job, it won't get done. You are lucky, you are young and your body can bounce back faster than someone who's older with the same issue. Have faith, you are not alone. Write down your concerns and questions and have them ready for your next doctor appointment, don't give up..and being your own advocate is the best thing you can do. Good luck!
Replies to "Hi. All I can do is offer advice. First, create a diary of all your doctor..."
@jen12 I can't go strikely vegan I do eat chicken ,pork but maybe once a week Rice is good can you put vegies on it ,my D.I.L.is vegan uses rice with vegies Im so sorry for your situation ,do you get out in sunshine this helps your Vit D and emotions I,ll prY you have a better day
Ok. You've tried whole foods and they don't make a difference. Jot that down in your medical diary. I get vitamin levels checked monthly every two months, when they test my ANA levels, I request vitamin check too. Since you do not drink milk, and going in the sun is bad, get over the counter vitamin D. Take everyday. My only question is, is there mold in your basement? It causes a lot of problems, mold, it can aggravate immune system, causing new problems ontop of the old. To me...everything is a process of elimination. Cover all bases. Since whole foods is a non-issue, buy canned vegatable soups. They are cheaper than a pre-made salad. You also may qualify for food stamps, due to disability, and if not, call a local food bank...tell them you are vegan, and you can get canned veggies and fruits, juices, and you don't have to prove you are poor, it's private. Don't feel guilty, this is why people donate, to care for those who need it. I have not worked in three years..it's a lifestyle change and some days I'm so sick I cannot get off the couch, and moved my bedroom on main floor next to bathroom (old den). These are just my thoughts.
Watch Afflicted on Netflix.
I have to disagree. Afflicted is horrible what they did to the patients to make it more ‘hollywood-worthy’ to make them like circus freaks and sound like they are crazy when they have real problems.
Unrest on Netflix is good with Jen Brea (leads the MEAction).
I def disagree. It shined a needed light on Lyme disease which is needed. I did not think they looked crazy. Brain on Fire and the other one is also excellent but perhaps living it minute by minute makes a difference.
Connect
I am vegan, so the very first thing any doctor (a PCP) did when I came to them complaining of fatigue was do a metabolic panel-- potassium was right in the middle of the normal range (4.2 mmol/L). In fact, all the nutrient levels that were tested were normal with the exception of vitamin D, which was treated several months ago.
The unfortunate part of things is I basically cannot do a whole-foods plant-based diet, which is the only diet I am willing to try (I am positive I cannot digest dairy any more, and I will NOT eat meat under any circumstances). I recently had to move into my in-laws' basement because I haven't been working for 9 months & can no longer afford to pay rent. I am too exhausted to be able to walk upstairs, to the kitchen, most days-- especially if I know I will have to stand for a long time after I am upstairs to prepare food. I also only have a mini-fridge in the basement-- not nearly enough space for the huge amounts of fruit & veg that are necessary for a whole-foods plant-based diet without having to go to the grocery store every day, which I do not have the energy for. Essentially, I have neither the energy nor the money to eat better. Buying pre-made salads & such costs a huge amount of $$. I've been mostly eating white rice with margarine lately, just so I have some amount of calories (I have a rice cooker in the basement). That's literally the most I can do these days.
Before all this started, I actually ate pretty damn healthy. Not perfect, mind you, but I was definitely getting far more fruit & veg than your average American-- past the recommended servings every day for sure.
Thank you for your advice, however! And I will take your advice about printing out previous test results as well (I have access to them all online). I will also make sure to begin writing a "doctor diary" after each visit, & I'll do my best to write entries for all the previous doc appointments, too, & I'll bring all that to my future doc appointments.