Share this:
jen12
@jen12

Posts: 8
Joined: Aug 17, 2018

Desperately Trying to Get Diagnosed

Posted by @jen12, Fri, Aug 17 12:41pm

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.

REPLY

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

@jen12 — here is another discussion that may be helpful for getting an appointment.

Groups > Visiting Mayo Clinic > Getting your first appointment
https://connect.mayoclinic.org/discussion/getting-your-first-appointment/

John

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/

@jen12 Hi, Jen. Sad to hear when someone gets shafted as you have. But it happens, and it has happened to me. Now, I will suggest something which I have done which has helped me, but there are no guarantees it will help anyone else. I have written up my medical history and posted in on Dropbox for anyone to read. You must accept that Mayo and other docs will NOT look at it when it is downloaded from https://bit.Ly/1w7j4j8, Amyloidosis, Amyloidosis and Old Karl. So if you do put it on lone, others will read it, but not docs. Do it to help others and to help others help you. Second, make it all on no more than four pages you can carry with you when you ask a doc for an appointment. Most importantly, include a time line in very simple language, but get it all off the med reports you have been given. If you do not have them, get them off the Internet from your provider. That way you are forcing yourself to be honest with yourself and your own thoughts as you speak for yourself in an un-hearing world. Everyone should have their own access to these papers. That way, when doctors change those reports later you still know what the truth is.

@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/

Jump to this post

Thank you for your insight! However, I tested negative for Lyme's disease. I also haven't been bitten by a tick for over 10 years (that I am aware of), & I've never found a deer tick on myself. I know that not all deer tick bites end up with the classic bullseye rash, or that the bite can be under your hair where you'd not be able to see it, but I feel very confident that I have never been bitten by a deer tick.

I've actually had several people mention that my symptoms sound exactly like Lyme's disease– it's odd how close they are to Lyme's when it's not actually Lyme's. Do you know if getting tested again is useful? I'd be willing to ask a doc to test me again if it wasn't just a moot point if I've already tested negative (tested on Jan. 9, 2018, symptoms began on ~Nov 1, 2017).

Getting retested can’t hurt. A second opinion is always good. Go to a different lab though.
Best of luck to you.
Jake

@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/

Jump to this post

Jen,

I think you should get another test for Lyme disease, but do it with the IGenex Lab. They say they have the most accurate test for Lyme. Many Lyme blood tests give false negatives which could have happened to you. Lyme is controversial because there are not a lot of accurate tests, and no tests for some of the co-infections that go with it. Lyme hides inside bio-films in the body where it is safe from antibiotics and successful treatment needs to be continued to get it in-between these stages where it can hide for years. The documentary "Under our Skin" covers the discovery of biofilms and how tricky the disease is and misunderstandings about it. Here is the website for IGenex and you can have your doctor order a test kit and go from there. IGenex is working with a lot of doctors from the ILADS society group who have treatment protocols, and they may be able to refer you to a list of physicians in your area. There is a lot of confusion with Lyme and more research is needed, but if you're the patient with the symptoms, you need someone who understands the current knowledge about the disease. Both the Western blot and ELISA test for Lyme measure for antibodies against Lyme and timing of when that is taken can produce different results and a false negative for a patient who actually has Lyme disease. Sometimes doctors treat for Lyme even when they can't prove it with a test, and there are patient success stories like this. The tiny nymph ticks can be missed since most people are looking for an adult tick and the nymph or seed ticks are as small as a poppy seed. A dog can easily bring them inside where they can bite you unknowingly. Your symptoms are similar to the people in the documentary. The ILADS Society has their upcoming conference in Chicago in November. The IGenex link I'm posting has other links at the end with more information. I hope this information helps and that you get answers and help somewhere. https://igenex.com/ticktalk/2018/01/12/your-lyme-disease-test-results-are-negative-but-your-symptoms-say-otherwise/

@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/

Jump to this post

@jen I agree with @jenniferhunter You should get another, and even a third or fourth test. The stakes are too high to allow even the possibility of negative to ruin your life. As I and others have said on another line, doctors, labs, nurses, techs are human. They, like all the rest of us, make mistakes, cheat or whatever. Just keep on, and fight for your own life.

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

@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

Jump to this post

Thank you for the advice– however, I have had 2 EMGs looking fo dystonia & they didn't see any, so I don't think this is it. Good idea though, thank you!!

@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/

Jump to this post

Thank you so much for your advice! I am seeing a new doc next week (infectious disease specialist this time), I will definitely bring this up & ask for an IGenex Lyme's test when I go. I hadnt realized just how often there are negative lymes tests, I definitely want to get retested.

I looked a bit more into it, I honestly think if I have lyme's that I've probaby had it for 10+ years based on some other symptoms that I didn't think were related that I've had for a very long time. I'll be sure to begin mentioning these other symptoms to docs from now on.

@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/

Jump to this post

Is there a cure for Lyme Disease? I feel so bad for you. M friend contacted Lyme Disease in Hawaii on a vacation. I heard that it is becoming more active. Also those stupid Misquitoes that bothered all the people in Florida is not petty all over the South half of our Nation.

@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/

Jump to this post

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.

@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/

Jump to this post

@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

@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

Jump to this post

https://solvecfs.org/about-the-disease/

Please login or register to post a reply.