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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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@sundance6 Hey wonder what happened to you nice to hear from you . Saying NO is what we fibro people need to learn ,hard lesson. I know when I overdue I'm going o pay for it the next day . I have had another fracture in my back its about 3 months now and it is much better . Did as the Dr. said and it has healed up I feel. Take it easy now Go fishing with your grandson
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2 ReactionsBiopsy-proven morphea. Just about the only thing in this whole condition has an actual diagnosis. No diagnoses for the other symptoms despite over 25 doctors seen and pretty much every test I'm aware of.
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2 ReactionsHey there, thanks so much for the encouraging message 🙂 I honestly didn't expect any response at all to my initial reply, I just googled "Rejected by Mayo" and this popped up so I used to to vent. I'm really happy to hear you are doing better 🙂 So the Cleveland Clinic has accepted me for an appointment and it looks like I'll be going to Ohio soon, hopefully they'll be able to tell me something the 25+ other doctors I've seen (including Mayo Jacksonville) have not!
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3 ReactionsAlso interesting about the Lyme.. I grew up in a house deep in the woods on Long Island, pretty much ground zero for lyme, several of my family members have had it. I was tested for it a couple times and it's always negative although I know those tests aren't 100%. Also my symptoms started about a year after I moved out of that house and while I was living in Europe. So I don't know. Hopefully will get some answers soon! again thanks!
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2 ReactionsDon't despair. I was "unwanted" by Mayo Rochester when I tried to self-refer to internal medicine. Then, several years later, my local Rheumatologist wrote a brilliant letter, the one my PCP should have written but wouldn't or couldn't. Perhaps ask your Rheumatologist to write a letter?
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4 ReactionsBoy, I’ll bet you were tired after those 3 trips @sundance ! And you did all the driving?? You mentioned that you went thru every department in the hospital and came up with a plan. Do you mind sharing your plan? It might help others. Thanks
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1 ReactionFirst - include non-western medicine in your treatment and get another perspective. You could have been talking about me. I have Lyme disease, ehrlichosis and another bug I don't want to remember the name of with reoccurring Epstein Barr virus. Western Medicine will not be honest with you about these diseases. I am in Oregon and we have an abundance of naturopaths. First, go to Amazon Prime or underourskin.com and watch the movie Under Our Skin about Lyme Disease. It will change how you see your health. You don't need a rash and, in fact, most people don't need the rash to be diagnosed. It is easier to get than you think. When I started treatment for Lyme, I felt better than I had in years and I was shocked. It made a believer out of me. But then again, I have major health issues where I need Western medicine, so don't give that up either because you may have something there too.
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1 ReactionGo to Amazon Prime Video or underourskin.com and watch the movie: Under Our Skin -
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1 Reaction@jen12 I don't know if you've found any help yet, but I too was rejected by Mayo Clinic (at two different locations) with some of the same symptoms as you. I understand the pain and frustration of dead ends. Have you heard of dysautonomia (aka autonomic dysfunction)? I just learned about it recently. Maybe it's something.
Hello @brittafr, Welcome to Mayo Clinic Connect. You mentioned being rejected at two different Mayo Clinic locations. Are you able to share a little more about your symptoms or current diagnosis? Do the doctors think it's autonomic dysfunction?
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