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.

@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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@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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Don’t go to Mayo for ME/CFS. They are way behind on the research. They still believe it to be like a psychosomatic disorder and ‘dysfunctional syndrome’. Stanford is leading the research. Dr. Sarah myhill’s website and YouTube videos are great as well as her book. You may be able to just improve from her treatment. Mayo doesn’t do the tests they are using for research. They’ll just do the rule out testing for all the other similar diseases like MS and MG. Good luck!

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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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Ok. You've tried whole foods and they don't make a difference. Jot that down in your medical diary. I get vitamin levels checked monthly every two months, when they test my ANA levels, I request vitamin check too. Since you do not drink milk, and going in the sun is bad, get over the counter vitamin D. Take everyday. My only question is, is there mold in your basement? It causes a lot of problems, mold, it can aggravate immune system, causing new problems ontop of the old. To me…everything is a process of elimination. Cover all bases. Since whole foods is a non-issue, buy canned vegatable soups. They are cheaper than a pre-made salad. You also may qualify for food stamps, due to disability, and if not, call a local food bank…tell them you are vegan, and you can get canned veggies and fruits, juices, and you don't have to prove you are poor, it's private. Don't feel guilty, this is why people donate, to care for those who need it. I have not worked in three years..it's a lifestyle change and some days I'm so sick I cannot get off the couch, and moved my bedroom on main floor next to bathroom (old den). These are just my thoughts.

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Where are you located? You need an integrated MD, functional med or Environmental MD…I see drs in Winston Salem at Robinhood Integrated Health. I live in SC. Worth it.

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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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Watch Afflicted on Netflix.

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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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I have to disagree. Afflicted is horrible what they did to the patients to make it more ‘hollywood-worthy’ to make them like circus freaks and sound like they are crazy when they have real problems.
Unrest on Netflix is good with Jen Brea (leads the MEAction).

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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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I def disagree. It shined a needed light on Lyme disease which is needed. I did not think they looked crazy. Brain on Fire and the other one is also excellent but perhaps living it minute by minute makes a difference.

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Sorry I am late, I have and had many issues with different cyber systems, in fact , in Michigan I lost my LPN license due to upgrades MiPlus. A story in itself. Sorry for your neurological issues. I understand. I retired from nursing in 2006, for a few years neuropathy. Luckily I love research(in fact, I believe research has more positive therapeutic affects than half the medical service. ) Yes, I always learn much in the research. Computers, texts, files, magazines, people, etc. For my neuropathy,(plus I have a substantial medical library at home), yes to use standard medical institutional services. It is difficult to sort out the more science based professional medical staff , at times medical university complex, other times that special physician is found at a middle sized city or small city. In fact, in my latest bout of neurological problem(dizziness), I assessed over 200 different neurologist in Michigan(looking for a radiological-neurologist), failed but did my best in finding that professional to validate an earlier MRI to brain. Health is an integrated affair. The best choices of a medical professional one can trust. I was fortunate, in my second bout(dizziness), young physicians did an excellent job(in ER) to give me the best possible start in understanding the new symptoms. Later I was not so fortunate, a lesser quality base in the physician. Plus I rely on my educational habits and instincts. (Worked in medicine for 20 years). For starters, it is critical one find the best word to describe ones illness. Dizziness is too vague and usually much of the information on inter-net is lay bulk with little substance. I rely on my medical library and ICD codes and NIH for start. Also impressed with medical stories in Medscape. Yes, in early phase of 3 years of dizziness, some spasm. I started my Adult Male MVI. Also based on the medical information, I add Fish Oil, Tumeric(science based medical herbal), and glucosamine/chondraitin effective for muscular aches . All are based on genetic sensitivity. There is regular progress in biotech. regarding biomarkers and biotargets…hope for vague neurological problems. I was ready to opt for a nursing home at initial of my dizziness symptoms. But the dizziness did not tax my driving ability. Plus I do regular research regarding BPPV and dizziness, a noted paper was from Dr. Martin A. Samuels, M.D. Chairman of Neurology Harvard Medical School…..it is a constant search, never to lose hope, so long the symptoms do not tax ADL's. Plus to keep my spirit, spirituality(what seems effective), I have a support family in the Philippines, a big plus in my over 3 year bout of dizziness. Plus Mayo Chat ….a professional connection, digital communication, one is in constant battle to sort out the waste. Hang in there, plus we all know, there is always genetic mutations constantly going on….possibly at times for better. JIM retired nurse…lately based on research changed my blood pressure medicine(Norvas), a high degree of sa dizziness for folks over 60, based on research, no medical service person flagged this dynamic. JIM>>>>>>

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@jczarkowski1270

Sorry I am late, I have and had many issues with different cyber systems, in fact , in Michigan I lost my LPN license due to upgrades MiPlus. A story in itself. Sorry for your neurological issues. I understand. I retired from nursing in 2006, for a few years neuropathy. Luckily I love research(in fact, I believe research has more positive therapeutic affects than half the medical service. ) Yes, I always learn much in the research. Computers, texts, files, magazines, people, etc. For my neuropathy,(plus I have a substantial medical library at home), yes to use standard medical institutional services. It is difficult to sort out the more science based professional medical staff , at times medical university complex, other times that special physician is found at a middle sized city or small city. In fact, in my latest bout of neurological problem(dizziness), I assessed over 200 different neurologist in Michigan(looking for a radiological-neurologist), failed but did my best in finding that professional to validate an earlier MRI to brain. Health is an integrated affair. The best choices of a medical professional one can trust. I was fortunate, in my second bout(dizziness), young physicians did an excellent job(in ER) to give me the best possible start in understanding the new symptoms. Later I was not so fortunate, a lesser quality base in the physician. Plus I rely on my educational habits and instincts. (Worked in medicine for 20 years). For starters, it is critical one find the best word to describe ones illness. Dizziness is too vague and usually much of the information on inter-net is lay bulk with little substance. I rely on my medical library and ICD codes and NIH for start. Also impressed with medical stories in Medscape. Yes, in early phase of 3 years of dizziness, some spasm. I started my Adult Male MVI. Also based on the medical information, I add Fish Oil, Tumeric(science based medical herbal), and glucosamine/chondraitin effective for muscular aches . All are based on genetic sensitivity. There is regular progress in biotech. regarding biomarkers and biotargets…hope for vague neurological problems. I was ready to opt for a nursing home at initial of my dizziness symptoms. But the dizziness did not tax my driving ability. Plus I do regular research regarding BPPV and dizziness, a noted paper was from Dr. Martin A. Samuels, M.D. Chairman of Neurology Harvard Medical School…..it is a constant search, never to lose hope, so long the symptoms do not tax ADL's. Plus to keep my spirit, spirituality(what seems effective), I have a support family in the Philippines, a big plus in my over 3 year bout of dizziness. Plus Mayo Chat ….a professional connection, digital communication, one is in constant battle to sort out the waste. Hang in there, plus we all know, there is always genetic mutations constantly going on….possibly at times for better. JIM retired nurse…lately based on research changed my blood pressure medicine(Norvas), a high degree of sa dizziness for folks over 60, based on research, no medical service person flagged this dynamic. JIM>>>>>>

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@jczarkowski1270 Hi Lioness here Im retired L.P.N. from Pa.After my work fracture I decided to retire went back but didn't work out This is a great group I give people what knowledge I can made alot of friends online here youll enjoy hearing about what serious problems they have how upbeat they are in face of pain

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@jen12contact Colleen Young connect director she gave some info to another person.who was desperate.

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Sorry about all your problems. I went to Mayo for Microscopic Colitis. Could not get a decent answer anywhere. Call and make an appointment at Mayo. It should not take long for them to see you. Maybe a month or two. They will want extensive medical records pertaining to your dilemma. It could be dystonia since the disease effects every inch of your body. Not a fun disease. I have pain with mine, but never had the problem of not hearing people. Regards, Dorothy

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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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