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.

@jczarkowski1270

I agree with others, holistic/integrative approaches best. Along with an over 3 year bout of dizziness, initially had some issues with leg and lower back pain. Luckily, the issues of pain for the most part resolved; first conventional/traditional assessments, (I never had much luck with NSAIDs, probably not sensitive to the chemistry there), but found turmeric quite effective and a balance day(some movements/30 minutes around the house and farm) and of course initially get imaging and labs. And somewhere in there, a supportive interaction with others that are worthy of positive support in ones life. JIM>

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Hi jczarkowski1270 I found a tea that helps with inflammation its ginger-tumeric tea from Trader Joe's I have fibromyalgia back problems now with bulging disc so am seeing neurosurgeon Sept 14 hope he helps . Have a good day

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I am so sorry for your frustrating predicament , maybe your luck will change and you will see the right person…..it has to be a place where they are dedicated to find out what the dickens is wrong with you…..all the best of British luck…..Beryl

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What I find interesting … is one of the BIG reasons people do not want socialized medicine is the terribly long waits for treatment or surgery. But it seems like we are heading in the exact same direction … can't get in to see a dr.,our medical treatments are guided by the insurance co's … or big pharma, Treatment and drugs have astronomical costs, hospitalization and medical treatment are the cause of MOST bankruptcies in the US, but WE DO NOT WANT SOCIALIZED MEDICINE!!!!!!!

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@barbarn

What I find interesting … is one of the BIG reasons people do not want socialized medicine is the terribly long waits for treatment or surgery. But it seems like we are heading in the exact same direction … can't get in to see a dr.,our medical treatments are guided by the insurance co's … or big pharma, Treatment and drugs have astronomical costs, hospitalization and medical treatment are the cause of MOST bankruptcies in the US, but WE DO NOT WANT SOCIALIZED MEDICINE!!!!!!!

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Barbarn Good question I never thought of it that way but your right its just not called by that name .

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Talking about dizziness is like talking about headaches with doctors. It's treated like a non-issue. I've dealt with dizziness all my life and doctors don't have a clue, nor do they seem to care. Good luck with dizziness. Can we obtain doctors who give a darn about dizziness?

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I was amazed at one comment about socialize medicine. In Wall Street lately, Bankruptcy Is Surging for Older Americans. More or less related to aging and its consequences. I rely on socialized medicine(Medicare and TriCare)….and I was not impressed with my insurance company when I worked for the federal government. As I edged towards retirement and the "aged", first my private insurance over-charged for colonoscopy costs, I fought it with certified letters and medical para legal letters, ….got lost in the confusion within insurance workers…the socialized Medicare wiped out that disaster. Then I was interested in the Long Term Care Partners for federal employees(John Hancock and MetLife)….I wanted to test the water of real medicine, rejected "…we are sorry to let you know that we cannot provide the insurance coverage…based on my health"As we age and medicine goes from academic to real, the options narrow. Similarly, I tried to maintain my LPN license, MiPlus(in Michigan), the nurses the first subjects(could not login) after 6 months of efforts, I opted to lose my renewal of license due to new cyber communications(I should say ex-communications). In the context of all this, plus news of efforts to default more and more patients out of the medical systems, to save money(ACA tried to address). Ultimately, when one is out of options, either one can opt for medical tourism(recognized by insurance companies), or an interesting option is MEDICC(the only nationwide bridge between the American and Cuban health system(remember Cuba as poor as they are, have an equal and above medical results compared to all U.S medical investments.) Keep posted….JIM retired LPN(lost license in Michigan MiPlus renewal upgrade systems.)

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I never heard of Medicc? How does it work who can get it? My L.P.N was from Pa but retired it I n Ca.

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I'm also feeling unwanted by Mayo Rochester. Maybe they just aren't up for challenging cases where diagnosis is difficult? Maybe it hurts their success rate if they aren't sure they can help? I don't know but I've been suffering with symptoms from multiple specialties (including an auto-immune problem) for nearly 20 years. Thought I'd be an ideal case for them to want to treat and study. And I got summarily dismissed by email and told to "try to treat it locally." Well I've been trying to treat it locally for the majority of my life and it's not working. Really discouraging that they didn't even want to try.

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@cdent411

I'm also feeling unwanted by Mayo Rochester. Maybe they just aren't up for challenging cases where diagnosis is difficult? Maybe it hurts their success rate if they aren't sure they can help? I don't know but I've been suffering with symptoms from multiple specialties (including an auto-immune problem) for nearly 20 years. Thought I'd be an ideal case for them to want to treat and study. And I got summarily dismissed by email and told to "try to treat it locally." Well I've been trying to treat it locally for the majority of my life and it's not working. Really discouraging that they didn't even want to try.

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Hello @cdent411, Welcome to Connect. I'm sorry you are feeling unwanted by Mayo Rochester. I've always had an excellent experience with them for several different health conditions. Did they review your medical records when you tried to setup an appointment? I think if they review what other doctors have said and are unable to provide anything more to help you. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

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@cdent411

I'm also feeling unwanted by Mayo Rochester. Maybe they just aren't up for challenging cases where diagnosis is difficult? Maybe it hurts their success rate if they aren't sure they can help? I don't know but I've been suffering with symptoms from multiple specialties (including an auto-immune problem) for nearly 20 years. Thought I'd be an ideal case for them to want to treat and study. And I got summarily dismissed by email and told to "try to treat it locally." Well I've been trying to treat it locally for the majority of my life and it's not working. Really discouraging that they didn't even want to try.

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@cdent411, I understand your disappointment. The reality is that Mayo Clinic receives more requests for appointments than available openings. Thus other factors for requesting an appointment come into play. Appointments are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). It is possible that reviewing your case, the physicians assessed that the care and treatments you are receiving is what they would recommend and didn't want you to incur additional costs for evaluation or travel. Additionally, while one Mayo Clinic location may be at capacity another may not. If location is not a factor for you, you could inquire about another Mayo location than the one you first contacted, i.e., at the Florida or Arizona campuses.

May I ask which conditions you are dealing with? I'd like to help you get connected with others here on Connect.

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@johnbishop

Hello @cdent411, Welcome to Connect. I'm sorry you are feeling unwanted by Mayo Rochester. I've always had an excellent experience with them for several different health conditions. Did they review your medical records when you tried to setup an appointment? I think if they review what other doctors have said and are unable to provide anything more to help you. I encourage you to call the Office of Patient Experience at Mayo Clinic.
Office of Patient Experience
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

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Thanks for your reply, it is really appreciated. It's really disheartening, I see stories all over about people with debilitating conditions coming to Mayo and finding a solution. I've been suffering for 18 years. I've been to a couple of specialists at Mayo Clinic Jacksonville but they are just like going to any regular specialist; only looking at one aspect of a multi-system problem, not the big picture, so the whole problem is never addressed and I'm still sick. For example I saw their GI and he had a few suggestions to alleviate the GI symptoms, but didn't have a clue about the auto-immune or urological symptoms, so there was no way he could treat the whole disease. Just the GI symptoms. My PC doctor told me to go to Mayo in Rochester to have a team look at the big picture and finally get this figured out, and then they reject me. Beyond depressing. I've put in a similar request to the Cleveland Clinic but if I don't have any luck with them I will call the office of patient experience as you suggest. Thanks again.

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@colleenyoung

@cdent411, I understand your disappointment. The reality is that Mayo Clinic receives more requests for appointments than available openings. Thus other factors for requesting an appointment come into play. Appointments are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). It is possible that reviewing your case, the physicians assessed that the care and treatments you are receiving is what they would recommend and didn't want you to incur additional costs for evaluation or travel. Additionally, while one Mayo Clinic location may be at capacity another may not. If location is not a factor for you, you could inquire about another Mayo location than the one you first contacted, i.e., at the Florida or Arizona campuses.

May I ask which conditions you are dealing with? I'd like to help you get connected with others here on Connect.

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Hi Colleen – Thanks for your reply as well. I understand they relieve more requests than available. I just thought someone suffering for 18 years who has seen dozens of doctors & specialists and still doesn't even have a diagnosis would be someone they'd be willing to take in. I'm not really receiving any care anymore; all of my local doctors are out of ideas – I've moved a lot over the years and this is always what happens, I exhaust all the local options until it just seems hopeless. I've tried to FL campus as I live near them, but they haven't been able to help, which is my my primary care suggested trying to go to Rochester. I need a multi-disciplinary team to help me figure this out and the Jax campus just sends me specialists who seem to work in silos. It feels like an infection, throughout the pelvic area, symptoms are urological, GI, skin irritation, and a recent biopsy revealed localized scleroderma (morphea) in the skin above the affected area. Any advice you can offer would be greatly appreciated.

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