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.

@jenniferhunter

Jen12,

It sounds to me like this could be Lyme disease. It does produce brain fog and muscle spasms and because this came on suddenly, it makes me suspect this. Have you had a fever or a rash? The rash isn't a determining factor and at least half of people who get Lyme never get the rash. Look at the ILADS group for information. Lyme is many diseases, not just the Lyme bacteria, as there are many co-infections that go with it. You may have been bitten by a tick unknowingly. My dog had Lyme and became spastic on one side and walked in circles. Treatment for Lyme for people involves some long term antibiotics and is easily missed and misunderstood. There is a documentary about it called "Under Our Skin" that you can find online. https://www.ilads.org/

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I've had some more time to read more about this now, & from what I am seeing, it sounds like for someone like me who would've had Lyme's for quite a long time, that I 100% would have tested positive. It sounds like the folks who have Lyme's but test negative are the folks who've only had it for a short time & so their antibodies aren't high enough against the bacteria yet to show up on a test.

I guess it's possible that I'd gotten it back in November when my symptoms first began (extremely unlikely as ticks are all gone by November in MN), but I really doubt it. I don't ever go into nature & I don't have any pets that go into nature either (haven't had a dog & lived in a tick-heavy area since 2009, & have never been a big outdoors person myself). And even if I'd gotten it in November, it would've still definitely tested positive by the time I got the test done in January.

I'll mention it to my new doc next week just in case, but I'm guessing she's going to tell me that test result in January was definitive & that it's a waste of time to get tested again.

REPLY
@jenniferhunter

Jen12,

It sounds to me like this could be Lyme disease. It does produce brain fog and muscle spasms and because this came on suddenly, it makes me suspect this. Have you had a fever or a rash? The rash isn't a determining factor and at least half of people who get Lyme never get the rash. Look at the ILADS group for information. Lyme is many diseases, not just the Lyme bacteria, as there are many co-infections that go with it. You may have been bitten by a tick unknowingly. My dog had Lyme and became spastic on one side and walked in circles. Treatment for Lyme for people involves some long term antibiotics and is easily missed and misunderstood. There is a documentary about it called "Under Our Skin" that you can find online. https://www.ilads.org/

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@jen12 This has to be frustrating to you ,I hope your new Dr will find a definite answer for you so you can get treated

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@matttheschmatt

If it isnt Lyme Disease you might look into dystonia – (hemidystonia). This is a good description of the types:
http://brainfoundation.org.au/disorders/dystonia

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@matttheschmatt

If it isnt Lyme Disease you might look into dystonia – (hemidystonia). This is a good description of the types:
http://brainfoundation.org.au/disorders/dystonia

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I've suspected CFS/ME for months, but every doctor I mention it to tells me, "I don't know anything about that, so I can't diagnose you with it," so I stopped mentioning it. Maybe if I go another few months without a diagnosis I'll search more aggressively for a doctor in my area that knows literally anything about CFS/ME to see what their thoughts are. Thank you for the suggestion though!

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@johnbishop

Hello @jen12 — Welcome to Mayo Connect. I'm am sorry you are having a problem making an appointment at Mayo Clinic Rochester. I did see a suggestion in the following discussion:

Groups > Visiting Mayo Clinic > Diagnosing Autoimmune disease
https://connect.mayoclinic.org/discussion/diagnosing-autoimmune-disease/

The suggestion in the first post was to find a Mayo trained doctor in your area (go on the internet) and make an appointment with him/her. If they can’t help you, they will refer you to Mayo Rochester Campus. Have you tried having your doctor refer you to Internal Medicine instead of Neurology? I think the specialized areas are generally harder to get an appointment with but once you have an appointment they all work as a team to find a diagnosis.

It’s disheartening to hear about the challenges you had seeking care at Mayo Clinic and that you are left feeling “not wanted as a patient”. I encourage you to call the Office of Patient Experience to tell them about your experience.

Office of Patient Experience
8 a.m. to 5 p.m. CST, Monday–Friday
507-284-4988

You might also be interested in the following TED Talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — What happens when you have a disease doctors can't diagnose:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

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Sorry for my late reply. I have actually talked to a Mayo-trained doctor in my area– he was the doc that diagnosed me with functional movement disorder. However, that diagnosis totally ignores my other, frankly more-pressing symptoms. I may ask him if he is willing to refer me to Mayo for my other symptoms, but he seemed reluctant to do anything for me before I'd finished the PT that he told me to do. I am very concerned that he may be the type of doctor that if I don't respond to the treatment he's prescribed that he will give up on helping me entirely. In my experience, doctors are very smart people that really, really hate to feel stupid– and when they can't diagnose a patient, they feel stupid, and then just stop trying to help the patient because it makes them feel dumb to not understand. I honestly have had only 2 doctors so far that seemed comfortable in not knowing what was wrong with me, & they were also the only 2 doctors that gave me any further assistance after they understood that they couldn't help me (they referred me to other doctors that they believed were better-suited to help me). The docs that seem to get their egos bruised by being unable to diagnose me just kind of kick me out without further direction, which is tremendously frustrating.

Also, I have seen that TED talk before as well as the documentary Jennifer Brea made about CFS/ME (Unrest). They are very good resources! I definitely fit the bill of a CFS/ME patient, but every doctor I've seen so far has been totally ignorant of the disease & will barely talk about it if I decide to mention it (I get shut down very fast because they tell me they don't know much of anything about it & therefore can't diagnose me with it & move on to the next thing). I am going to keep searching for a diagnosis, whether it ends up being CFS/ME or not, though. I still have 1 or 2 other things I suspect I may have that I need to get checked out before I aggressively seek out a CFS/ME-literate doctor.

Thank you very much for your advice & the links you've provided as resources!

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I am so sorry for your struggles. I have CFS among other diagnosis. Send me a message and I will share privately where I go. My end diagnosis is late stage Lyme. Peace.

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@johnbishop

Hello @jen12 — Welcome to Mayo Connect. I'm am sorry you are having a problem making an appointment at Mayo Clinic Rochester. I did see a suggestion in the following discussion:

Groups > Visiting Mayo Clinic > Diagnosing Autoimmune disease
https://connect.mayoclinic.org/discussion/diagnosing-autoimmune-disease/

The suggestion in the first post was to find a Mayo trained doctor in your area (go on the internet) and make an appointment with him/her. If they can’t help you, they will refer you to Mayo Rochester Campus. Have you tried having your doctor refer you to Internal Medicine instead of Neurology? I think the specialized areas are generally harder to get an appointment with but once you have an appointment they all work as a team to find a diagnosis.

It’s disheartening to hear about the challenges you had seeking care at Mayo Clinic and that you are left feeling “not wanted as a patient”. I encourage you to call the Office of Patient Experience to tell them about your experience.

Office of Patient Experience
8 a.m. to 5 p.m. CST, Monday–Friday
507-284-4988

You might also be interested in the following TED Talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — What happens when you have a disease doctors can't diagnose:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

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Jen…you are not alone. Drs frustrate me. Older I get the more I realize they are God's. What is a TED. Talk.

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@matttheschmatt

If it isnt Lyme Disease you might look into dystonia – (hemidystonia). This is a good description of the types:
http://brainfoundation.org.au/disorders/dystonia

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John. My kids expect me to go to Dr have a quick diagnosis have prescriptio. And go back to being mom. It is quite frustrating. I think I will add a therapist to long list of doctors. If they go to appt with me, they act more knowledgeable than Dr and refuse meds on my behalf. Now I go alone and had talk with my almost lost RA dr. I cannot mention a new pain here or there due to their overly belief that mom will live forever. Now that cancer is mentioned, there is no discussion. Wait awhile and it will go away.
This is anything but Love. It is causing g serious problems. Have you ever heard of this. Now I quietly go to Dr without announcing it. So now they know I am well.

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@matttheschmatt

If it isnt Lyme Disease you might look into dystonia – (hemidystonia). This is a good description of the types:
http://brainfoundation.org.au/disorders/dystonia

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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.

John

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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!

REPLY
@thunder_dog88

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!

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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.

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@thunder_dog88

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!

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@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

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