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.

@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.

REPLY
@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.

REPLY
@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.

REPLY
@cdent411

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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I’m curious how you know you have an auto-immune problem. Do you have any diagnosis for GI, urinary tract or auto-immune problem?
Jake

REPLY
@cdent411

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.

Jump to this post

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.
Sundance(RB)

REPLY

@sundance6 Hey wonder what happened to you nice to hear from you . Saying NO is what we fibro people need to learn ,hard lesson. I know when I overdue I'm going o pay for it the next day . I have had another fracture in my back its about 3 months now and it is much better . Did as the Dr. said and it has healed up I feel. Take it easy now Go fishing with your grandson

REPLY
@jakedduck1

I’m curious how you know you have an auto-immune problem. Do you have any diagnosis for GI, urinary tract or auto-immune problem?
Jake

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Biopsy-proven morphea. Just about the only thing in this whole condition has an actual diagnosis. No diagnoses for the other symptoms despite over 25 doctors seen and pretty much every test I'm aware of.

REPLY
@sundance6

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.
Sundance(RB)

Jump to this post

Hey there, thanks so much for the encouraging message 🙂 I honestly didn't expect any response at all to my initial reply, I just googled "Rejected by Mayo" and this popped up so I used to to vent. I'm really happy to hear you are doing better 🙂 So the Cleveland Clinic has accepted me for an appointment and it looks like I'll be going to Ohio soon, hopefully they'll be able to tell me something the 25+ other doctors I've seen (including Mayo Jacksonville) have not!

REPLY
@sundance6

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.
Sundance(RB)

Jump to this post

Also interesting about the Lyme.. I grew up in a house deep in the woods on Long Island, pretty much ground zero for lyme, several of my family members have had it. I was tested for it a couple times and it's always negative although I know those tests aren't 100%. Also my symptoms started about a year after I moved out of that house and while I was living in Europe. So I don't know. Hopefully will get some answers soon! again thanks!

REPLY
@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.

Jump to this post

Don't despair. I was "unwanted" by Mayo Rochester when I tried to self-refer to internal medicine. Then, several years later, my local Rheumatologist wrote a brilliant letter, the one my PCP should have written but wouldn't or couldn't. Perhaps ask your Rheumatologist to write a letter?

REPLY
@sundance6

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.
Sundance(RB)

Jump to this post

Boy, I’ll bet you were tired after those 3 trips @sundance ! And you did all the driving?? You mentioned that you went thru every department in the hospital and came up with a plan. Do you mind sharing your plan? It might help others. Thanks

REPLY

First – include non-western medicine in your treatment and get another perspective. You could have been talking about me. I have Lyme disease, ehrlichosis and another bug I don't want to remember the name of with reoccurring Epstein Barr virus. Western Medicine will not be honest with you about these diseases. I am in Oregon and we have an abundance of naturopaths. First, go to Amazon Prime or underourskin.com and watch the movie Under Our Skin about Lyme Disease. It will change how you see your health. You don't need a rash and, in fact, most people don't need the rash to be diagnosed. It is easier to get than you think. When I started treatment for Lyme, I felt better than I had in years and I was shocked. It made a believer out of me. But then again, I have major health issues where I need Western medicine, so don't give that up either because you may have something there too.

Liked by Jennifer Hunter

REPLY
@sundance6

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.
Sundance(RB)

Jump to this post

Go to Amazon Prime Video or underourskin.com and watch the movie: Under Our Skin –

Liked by Jennifer Hunter

REPLY
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