Desperately Trying to Get Diagnosed
I already posted this in the Neurology sub, but I wanted to post it here, too, as my symptoms seem relevant to autoimmune as well:
I have been sick for 9 months now. I was 23, no other known health problems, then suddenly I got extremely fatigued for about 2 weeks back in November– then I started getting muscle spasms, too. Now, I have been chronically fatigued for 9 months, & nothing eases the fatigue– there are only things that make it worse. Sleep does nothing, caffeine does nothing, rest does nothing… but if I don’t sleep, or miss a meal, or do any amount of exercise, or use my brain for more than very basic functions, my fatigue gets worse & it can take a few days to recover if I push myself too far. In addition, I have muscle spams only on the right side of my body that are triggered by physical activity. They make walking pretty impossible because my right leg has major random muscle contractions that I can’t control– walking makes my fatigue & spasms worse, anyways.
On top of all of that, I have brain fog, too. I used to work as a junior scientist in a lab researching muscular dystrophy at the University of Minnesota– I’d just graduated from college with a B.S. in biochemistry 6 months before all this started happening. Basically, I am trying to say that I really enjoyed being mentally stimulated and I liked to work out complex problems. Now, if I try to stimulate myself mentally, I can’t concentrate at all and I get really, REALLY tired. I get kind of confused and my short-term memory has gone to crap. I literally don’t even hear when people are talking to me unless they specifically get my attention first– my poor husband will tell me an entire story and my brain doesn’t even pick up that someone was talking if I’d been doing something other than talking to him when he began telling his story. I feel awful every time he has to ask, “Did you hear what I just said?” & that’s the first time I even registered his voice.
So now, I’ve seen several doctors (4 neurologists, a rheumatologist, 2 PCPs, an endocrinologist, & a psychotherapist). I have had a few abnormal test results that apparently don’t actually mean anything– which makes me wonder why the doctors had me pay to have them done in the first place. I had high insulin & C-peptide levels when I was tested in November (not a diabetic), but then it was never tested again. I had high Epstein-Barr Virus antibody titers in January, but then I was never tested again. I had high antibody titers against antistreptolysin O (Group A Strep) in June, but was told that didn’t mean anything (then why did the doctor order this test!!!). I had low acylcarnitine levels in January, then I was tested again in June and they were even lower, but I switched from a rheumatologist (who thought this was significant but didn’t know what it meant exactly) to a neurologist, and the neurologist literally ignored me when I mentioned it to him. So, there’s my 5 abnormal test results that apparently mean nothing, because the doctors I’ve spoken to either ignore them entirely or tell me that they are insignificant. I’ve never had mono (epstein-barr virus) or strep throat (antistreptolysin-O) before either, at least I’ve never thought I did or been diagnosed with either of them before, so idk why my antibody titers would be high (IgG antibodies for both, so the ones that indicate a previous infection but not a current one).
I was diagnosed with Functional Movement Disorder by a neurologist very recently for my muscle spasms only (not the fatigue & brain fog, so these are still 100% unresolved issues). He told me to get physical therapy, then told me most patients see a dramatic decrease in symptoms within 2-3 PT sessions & total & permanent absence of symptoms within 4-5 months. I got physical therapy for 4 months earlier this year (late December – mid-April), but I assumed that was not specifically targeting my muscle spasms & was more to prevent muscle atrophy, so I thought that this new PT was going to specifically target my symptoms. So, I saw the physical therapist that he highly recommended to me, & she told me that she looked over the previous physical therapists’ notes, and said she’d have done exactly the same therapy with me for Functional Movement Disorder. So like… what the hell, honestly? Did the doctor not know that I’d received PT for 4 months already? I called his office yesterday explaining that the new physical therapist just told me I’d basically already received treatment for the thing he diagnosed me with & that obviously it didn’t work after 4 months the first time, so it would be ridiculous to do the exact same thing again hoping for different results (still waiting on a call back regarding this). Also, the physical therapist he recommended ignored me when I told her at least 4 times during our 40-minute appointment that I crash if I push myself too hard, then she pushed me way too hard, & I had a horrible crash– she actually managed to induce new, worse symptoms in me because she pushed me too hard. Great, I really love being ignored by people who are supposed to be helping me & then ultimately being made sicker by them because they ignored me (sarcasm).
I have a whole slew of other, smaller symptoms, but these are the big ones. My question now is this: How on Earth do I get Mayo Clinic to accept me as a patient? My rheumatologist referred me to Neurology at Mayo & I was denied. Then a few days ago I tried to self-refer to Internal Medicine at Mayo as a last-ditch effort because I’d heard of someone who was rejected with a doc referral but got in on self-referral, & I got an email this morning saying I was rejected from Internal Medicine, too.
Do I just have to wait until I’ve been sick for years and years like all the other people I’ve read on here who have stories of finally getting diagnosed? I do not want to keep wasting my time with doctors who ignore what I say & keep telling me they don’t know what’s wrong with me without giving me any advice on what to do next. I am beyond frustrated that I have spent thousands of dollars I do not have only to still be at square 1 of diagnosis. My only thought of how to get diagnosed is to go to Mayo Clinic (Rochester, as I live in MN– I cannot afford to travel farther), but they are too full of other desperate people trying to get their diagnoses, and I can’t get in.
Tl;dr: Anyone have any tips on how I can get into Mayo Clinic – Rochester after being denied entry into both Neurology (w/ doctor referral) & Internal Medicine (self-referral)? Thank you so much for any advice.
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@oregongirl — Kids can be frustrating especially when they don't know what to do and are trying to help. I too wouldn't want my kids refusing meds on my behalf but I might like their advice if they have data to back up what their reasons are and help me have an honest discussion with my doctor. I think most doctors are open to discussing a medication and it's side effects and your need for the med. In my humble opinion, I think the fact they want to go to the doctor with you is because they love you. Cancer is scary and I'm sure they don't know what to say. It might help to get them together and have an honest conversation on how you feel and how they can help you.
@oregongirl are your kids open to discussing your situation and how it's affecting you?
Hoping you find some answers.
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!
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.
@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
Don’t go to Mayo for ME/CFS. They are way behind on the research. They still believe it to be like a psychosomatic disorder and ‘dysfunctional syndrome’. Stanford is leading the research. Dr. Sarah myhill’s website and YouTube videos are great as well as her book. You may be able to just improve from her treatment. Mayo doesn’t do the tests they are using for research. They’ll just do the rule out testing for all the other similar diseases like MS and MG. Good luck!
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.
Where are you located? You need an integrated MD, functional med or Environmental MD…I see drs in Winston Salem at Robinhood Integrated Health. I live in SC. Worth it.
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).