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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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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Hmm…my pain doctor did not think low dose naltrexone would help me. I tried to get into a holistic doctor in our area but they are not accepting new patients. I know he is reputable. I will look into the Sjoren’s disease. Thank you.


Hmm…my pain doctor did not think low dose naltrexone would help me. I tried to get into a holistic doctor in our area but they are not accepting new patients. I know he is reputable. I will look into the Sjoren’s disease. Thank you.

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Not all pain doctors prescribe LDN or they have no knowledge of or experience with it. It helps many with muscle/joint weakness, pain, lack of energy, brain fog, to name a few. There are pain doctors who do prescribe it for those ver symptoms; maybe see if you can find one? Have you looked for a functional or integrative doctor? Sometimes they go by different names other than naturopath.


I will look up those types of doctors. I am having an EUS on April 10th but my pain is so severe. Thanks for your advice!!


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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Thank you for asking. The symptoms can be very very difficult to describe. In fact, most of them are undescribable. It’s been a four year journey, so I’m just gonna kind of go to where I’m at now. Amongst so many symptoms let’s start with a predominant left side numbing, deep on the inside from the very tip of my head down to my groin into the foot. The entire left side can go numb. It may progress to my entire body. I’ve had a couple strokes, but this is not a result of the strokes, the doctors have assured me that , I get this sensation that tends to feel like restless leg syndrome to my entire left side. my hands and ankles can get tingly intensely and also my whole entire body. The symptoms come and go separately or together they start gradual and dissipate or get very intense. There is no rhyme or reason and how the symptoms progress or dissipate. I don’t lose strength I don’t lose coordination. My vitals are generally very good. As I’m speaking this text, I can sense. The left side of my mouth is numb. That’s it in nutshell but believe me, it’s not as simple as what I’ve just described I’ve done everything from making sure my vision is correct all the way up to a four hour neuropsychological exam And several MRIs and a few trips to the ER. On top of other types of testing if it’s a standard test in a standard city I’ve had it I’ve had extensive bloodwork. I couldn’t tell you what all they checked for but it was extensive. I’m going to leave it at this right now , although I wonder if anyone out there has been diagnosed with hemiplegic or full body migraine. The doctors around here in Grand Rapids Michigan looked dumbfounded when I mention hemiplegic migraine or full body. They don’t have a clue what leads me to that is that it is the only other thing I can find that explains 1/2 of my body going numb. The doctors in this area don’t even address that , being on the Internet, watching television, reading tend to be triggers. I see tends to be triggers. Although it can come and go whatever it wants but these so-called triggers can intensify it. So I’m speaking this text without actually looking at it so that it doesn’t mess with me. And I apologize in advance for any difficult things that you might be seeing on this that I cannot correct thank you.
Looking at me, as a rule, you wouldn’t have a clue of what I’m going through. Any given moment.

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