Desperately Trying to Get Diagnosed

Posted by jen12 @jen12, Aug 17, 2018

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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I’m in my fourth year of no diagnosis. My symptoms are progressing. Doctors say I’m not dying. That’s reassuring when I feel as if I’m dying.

I have been wanting to post something about my symptoms and experience but I just don’t know where to start.

I’m so sorry for what you are going through. I’m sure that so often you feel alone in all of this.

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Can you not get your primary physician to refer you to the doctor you need to see? Sounds so crazy to put a sick patient through this bureaucratic rigamarole. I'm no doctor but think you need to see a neurologist who specializes in multiple sclerosis because of the Epstein-Barr results. Recent studies have shown a connection. You need to get an MRI of your brain. Best of luck.

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First, have you had a sleep test? Sleep issues (including apnea) can cause all sorts of bizarre symptoms—and exacerbate whatever underlying conditions you might have. At the very least, ruling out sleep issues as a source of your fatigue could help.
Second, I had nearly all the same issues for over a decade. Finding out I had apnea helped, but did not fully resolve things. Luckily, while I was visiting my neurologist (for chronic migraine, not the other problems), he suggested a test trial of steroids to see if it gave me any relief from my unrelenting fatigue, pain, swelling, and stiffness. It did, so I found a new rheumatologist and, after years of having doctors dismiss everything (they seem to think all women are hypochondriacs), finally received a diagnosis (mine turns out to be RA and relapsing polychondritis, after years of being seronegative).
So, hang in there. Eventually, some test will get you in the door. It doesn't have to be the Mayo Clinic. Any smart, patient doctor who knows how to pay attention should be able to help.

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We also got denial letters, finally after requesting a Dr send a request Ken did get seen. We didn't get answers there as how to proceed to feeling better just got answers as to what he didn't have, so I feel your pain in all of this. Ken had Lymphoma of his duodenum and Jejunum resulting in thickening of the areas causing partial bowel obstruction and thus, then causes inflammation and pain and inability to eat and enjoy life. I pray that you find some answers and comfort in your journey. Prayers!

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I wish you the best of luck. I have posted my frustration with not being able to gget into the Mayo clinic after 8 months of severe weight loss, GI issues and a POTS diagnosis. I won’t go into everything I have been through. Basically on bedrest for 14 months now and lost 27 plus pounds. I honestly believe some people just die without ever being treated. I am not blaming this on the Mayo clinic but just our healthcare system in general. I just had a new GI order an EUS but they can’t get me in for over two months. Then the first available follow up is in late July. More than 6 months later. I have given up hope!

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I live an hour and a half from Rochester and last Monday was seen by a rheumatologist for pain and stiffness in my legs. After an hour with him he said he was not sure what was wrong but ordered a nerve conduction test. He was excellent and spent over an hour with me. Now I also have fatigue but that issue was not addressed, just the pain. I was able to get in with days after my doctor ( who is part of the Mayo Clinic) wrote it. Now I am thinking if your doctor ( primary) is part of the Mayo system then you can get in quickly. At least that is a good guess.

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@ilean

I wish you the best of luck. I have posted my frustration with not being able to gget into the Mayo clinic after 8 months of severe weight loss, GI issues and a POTS diagnosis. I won’t go into everything I have been through. Basically on bedrest for 14 months now and lost 27 plus pounds. I honestly believe some people just die without ever being treated. I am not blaming this on the Mayo clinic but just our healthcare system in general. I just had a new GI order an EUS but they can’t get me in for over two months. Then the first available follow up is in late July. More than 6 months later. I have given up hope!

Jump to this post

Hi, don't know your condition but have you tried with diet, like gluten free, no additives, colorants, or anything that should not belong in the food?

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You should consider seeing a naturopath who can do extensive testing; you may have Sjogrens which can manifest many if your symptoms. There are specific treatments/ drugs to help. Many take LDN ( low dose naltrexone) which can be a lifesaver. You can research all this online, Facebook has many groups/forums on both topics. Wishing you well.

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@pakeemer

I’m in my fourth year of no diagnosis. My symptoms are progressing. Doctors say I’m not dying. That’s reassuring when I feel as if I’m dying.

I have been wanting to post something about my symptoms and experience but I just don’t know where to start.

I’m so sorry for what you are going through. I’m sure that so often you feel alone in all of this.

Jump to this post

Hello @pakeemer, Welcome to Connect. I know it has to be difficult with symptoms that are progressing and not being able to get a diagnosis after four years of trying. Are you able to describe how your symptoms are progressing and what kind of symptoms you have?

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@khali

Hi, don't know your condition but have you tried with diet, like gluten free, no additives, colorants, or anything that should not belong in the food?

Jump to this post

I can’t eat air drink/sip anything without hours of pain afterwards. I did go to an allergist but not allergic to anything.

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