Chapter 1. Joanne’s Case: “I can’t even get a diagnosis.”

Client Name: Joanne

Age: 53 years old

Gender: Female

Ethnicity: Caucasian

Occupation: Retired, used to own a boutique

Current living situation: I live with my husband on a farm

Why are you seeking services at our clinic? I have a lot of pain, muscle aches, and no energy. I’ve consulted many doctors, but no one can tell me what is wrong with me. My husband was diagnosed with a chronic heart condition, and it’s very stressful to have to worry about his health in addition to my own.

Joanne: The last doctor I saw, the neurologist, referred me to your office. This doesn’t make any sense [sounding annoyed] – my problems are physical [emphasis], not in my head! [sighs] But I guess I shouldn’t be surprised – the doctors keep passing me from person to person. You’re the sixth specialist I’ve seen this year, and that’s not even counting the chiropractor, massage therapist, and the acupuncturist. And nothing any of them has tried has helped for more than a day or so. [exasperated] The chiropractor worked on my hip and it felt okay for a day, but then it was so sore I couldn’t move my leg at all!

Jack: [quietly] I’m really getting tired of going to all these appointments with her.

Joanne: But we need to get to the bottom of this and figure out what’s wrong.

Joanne: The biggest thing is that I feel really, really tired all the time. I have absolutely no energy ... sometimes I just spend the whole day in bed. I have muscle aches all over ... in my arms and legs and ... [groans] ugh, my shoulders just really hurt most of the time. And the headaches ... I’ve always had headaches, but not this frequently for a long time. Now I get headaches just about every day, so I take Ibuprofen every day. And ... in a new development [sarcastically] ... I have a pain in my right hip. Periodically, my hip will buckle under me. But the orthopedist I saw a month ago “claims” [with disbelief] that there is “nothing wrong.” [incredulous, even a bit angrily] C’mon. How can there be “nothing wrong?”

Jack: I’m very worried about Joanne, but I’m getting really tired of going to all her doctors’ appointments. It’s a full-time job! What’s more, it’s exhausting and stressful, and I shouldn’t be that stressed right now.

Joanne: [annoyed and exasperated] They aren’t telling me anything! I’m having to do all the work myself. I spend hours and hours on the internet looking up my symptoms. I can’t find any answers on WebMD ... that site is useless... so I have to dig deeper and really look at blogs and message boards and whatnot. I’ve found all kinds of possible explanations, but whenever I go to see one of these doctors, they rule out my theories! Let me give you an example. I was really worried about my hip, so I did a lot of digging around on that. I had a hysterectomy a few years ago, and I take estrogen for hormone replacement. Well, I found a link! I found a website that said that estrogen can affect your muscles. So I went to my OB-GYN and asked if it could be affecting my hip muscle. She said that this muscle problem is very rare and dismissed it.

Joanne: I feel like it’s worse when things are stressful at home. We live on Jack’s farm, which is in the middle of nowhere. Honestly it’s completely isolated. It’s beautiful, but I feel like I’m suffocating at times. Before we got married ... that was 10 years ago ... I’d always lived in the city. Life on the farm can be boring and sometimes I feel really alone – I’m not close to anyone in the area ... well, except for Jack, of course. And Jack has just been diagnosed with a chronic heart condition. It’s been completely overwhelming.

Jack: Not just overwhelming for you. And the farm is my sanctuary. [sadly] I didn’t realize how much you didn’t like living there.

Jack: I’m ok. My condition isn’t life-threatening.

Joanne: When he first started having problems, he was in the hospital for several days. Because where we live is so isolated, the closest hospital is 50 miles away. So I did visit him, but that kind of drive really does a number on me, so I couldn’t stay long due to my soreness and feeling so tired. Then I’d have to drive another 50 miles home ... I’d be exhausted when I got back with no one there to help me.

Jack: To answer your question, I was married twice before, and I have three children. They are still resentful of me for divorcing their mom ... my first wife. They’re adults now.

Joanne: I never had kids. But I really wanted to get close to Jack’s kids.

Jack: [with empathy] Joanne has really gone out of her way to try get close to them. But they just don’t seem interested ... Makes for some lonely holidays.

Joanne: That’s been hard for me and for Jack ... I had really hoped we could be a close family, but they just don’t seem interested. Now that Jack is home, I have to take care of him. He is so focused on all his medications, what he’s eating, exercising ... and well ... he doesn’t seem to be concerned about me at all anymore. What about me? [frustrated] I have this debilitating illness and can’t even get a diagnosis!

Jack: [sounding fed up] Well ... let me be blunt here ... when she says stuff like that, I sometimes wonder if she’s jealous of the medical attention I’m getting with my heart condition. Believe me, this is no walk in the park!

Joanne: [incredulous] What? How dare you – I never!

Jack: [conciliatory] Joanne, I have a lot of sympathy for you, but now I’m running out of patience. I was hoping that when I retired, we could do projects around the farm and go antiquing together. You used to love doing stuff like that.

Joanne: [sorry for herself, whining a bit] I’ve been feeling weak. You know that. I don’t want to overwhelm myself. Even just unloading the dishwasher makes me exhausted.

Jack: [breaking in] And then a couple weeks ago, she reached for a vase on a high shelf, and ever since, she’s been complaining that she can’t use her right arm because it’s sore.

Joanne: [indignant, defensive] Well, it is!

Jack: [sad] I miss doing things together. I go shopping and antiquing alone now. You don’t even grocery shop any more. And when the neighbors stop by to say hi, you go hide in the bedroom.

Joanne: [defensively] I’m just too tired to talk.

Jack: Doc, I don’t know much about psychology, but I worked in human resources before I retired. I know that sometimes when people say they have physical problems, they aren’t aware that these problems could be in their heads, instead.

Joanne: [with an edge] So now I’m a liar, too?

Jack: Well, her headaches and fatigue always seem to come at a “convenient” time.

Joanne: [jumping in] What? Like when?

Jack: Like I just said, when the neighbors come over. Or when your sister came for a visit, or one of the few times one of the kids comes to visit.

Joanne: I get headaches when I’m overwhelmed or stressed. [with mock patience] You know that. These have been going on for well over a year. And they’re like migraines, so I have to go lay down in a dark room.

Jack: Well ... That can make it tough on me, because I have to entertain our guests alone. I don’t mind cooking or going out with the guests alone, but I would prefer it if you could socialize with all of us. [tenderly] I feel like you are missing out.

Joanne: [Tearful] I feel like I’m missing out, too.

Jack: Joanne is the love of my life.

Joanne: [choking up] I feel the same way about you, Jack.

Jack: I was still married to my second wife when I met Joanne. I just couldn’t stay away from her. We had an affair, and it ended that marriage.

Joanne: Even though he’s 12 years older, I was completely bowled over by him.

Jack: We got married, and I retired pretty soon after. We moved out to the farm and ... apparently Joanne hates it. I didn’t realize that until today.

Joanne: I ... I don’t necessarily hate it. It’s just that it’s your dream, not mine. And when it’s not doing well, it’s so stressful. It’s your dream, not mine. I never lived in the country before we got married. And ... I never thought I’d end up on a farm.

Joanne: You know, I used to feel like I knew, but now, I’m not so sure. I have a BA in performing arts from a prestigious school. When I lived in the city, I did some acting – I was on a couple TV shows, you know ... Dead Body #2 and that kind of thing, and I also did some commercials. I used to own a sophisticated women’s clothing boutique downtown. I tried to channel some of that creative energy when we first got married into decorating our home. I miss being creative. I miss running the boutique and going on buying trips to New York. I miss my friends and doing things in the city, like going to the theater, to movies, or out for drinks. I’ve talked to Jack about moving to a small city so I can work in a shop or maybe even own one again, but this farm is his life ... he’s not interested.

Jack: This is my dream. I’ve always wanted a farm. I worked for the state government, in HR, for years. I was tired of the ugliness and bleakness of the city. I grew up in the country and I went to college in a rural setting. I missed working on the land. Moving to the farm has allowed me to do that.

Joanne: Sometimes I wonder if this move was the right choice ...

Jack: [gasps] Do you mean – do you wonder if you should have married me?

Joanne: You know I love you, Jack. It’s just that, I feel so isolated on the farm. I’m not sure how I can find my creative side there.

Joanne: [laughs] No, not at all! My dad was an engineer for a large manufacturing company in the city, and my mom was a stay-at-home mom. Actually ... [as if just remembering] my older sister, Julia ... she’s artistic, too. She’s a professor of performing arts at the university back home. We were pretty competitive growing up. She’s 5 years older, and she had this crazy idea that my parents loved me more than her. I don’t know where she got that idea! She’s married, too, to a lawyer. [quieter] I worry about her sometimes. I think she’s an alcoholic. I’ve tried to get her help, but Julia doesn’t think she has a problem.

Jack: Your dad, right hon? And more recently your mom, too.

Joanne: Yeah, Jack’s right. My dad died of colon cancer when I was in my teens. He was in and out of the hospital a lot until the very end. And after he died, my mom was really afraid that something awful would happen to Julia or me. If we got a sniffle or fell and scraped our knees, she would freak out. She called us daily even when we were adults. She’d panic if we didn’t call her back right away. She’d even call my friends to check on me if I didn’t call her back fast enough! I felt like something was wrong with me that she knew about and I didn’t. I’d tell her I was doing fine, but she would say “Are you sure? Maybe we should take you to the doctor!” So I’d end up going to the doctor for all kinds of silly things, like a cold.

Jack: That’s kind of ironic, given how she died.

Joanne: I never thought of it that way before, but yeah. My mom ended up getting leukemia late in life, and she died of it 12 years before I met Jack, so it’s been awhile now.

Jack: From what you’ve told me, it tore you and Julia apart.

Joanne: Mom saw that Julia was having problems before I did – her paranoia finally came in handy, I guess. So she made me executor of the estate. I think I did a good job taking care of the estate ... I even gave Julia more money than mom left her. But [sighs] Julia didn’t see it that way – she saw this as proof that mom loved me more than her. She’ll call me, even now, 22 years later, drunk and blame me for everything.

Jack: Those calls are horrible. Julia blames Joanne for everything. I’ve started just letting it go to voicemail if I see it’s Julia calling so Joanne doesn’t have to hear that.

Joanne: [sighs] I always get a massive headache after she calls.

HOST: Then in 2011, healthwise, things changed dramatically for you. Tell me about that.

JOANNE: In January, that's when I was hit again. And then it was in February, I fainted, and I hit my head again. So after that, I went to the hospital. And they ran a whole bunch of tests, like head CT, everything. And I was looking pretty good still, so they sent me home. But then that night, my legs began to start shaking just when I was like walking and stuff. And I could lay down and be fine, but when I started walking, my legs shaked. And it gradually got worse. So I went back to the hospital, and they ran more tests, did a lumbar puncture, everything.

HOST: That's a spinal tap.

JOANNE: Yep. Yep. And everything was still looking fine. They sent me home again. And the shaking progressed. And it was starting to look like I was having seizures-- like it was getting more constant. I was starting to stutter a bit. So I went back to the hospital. I was like, hey, something's going on. And they admitted me then. And they ran even more tests-- I stayed a few nights-- and the shaking just kept continuing.

HOST: You must have been terrified.

JOANNE: I thought I was dying. Instantly, I thought I was dying. I didn't know what was going on. And I had hit my head so many times, that I was so scared that my brain was bleeding. I didn't know what was going on.

HOST: And we have some video of you from that time to show our audience what you're talking about. We can roll that in, and we'll take a look at it. There you are in the hospital. This is the same girl-- what a year before, you were playing hockey.

NEWS ANCHOR: For months, doctors in Le Roy, New York have been trying to figure out what caused 12 girls to have severe ticks, almost like tourette syndrome. Now the State Health Department is weighing in.

THERA SANCHEZ: It was just supposed to be white right there. REPORTER: 17-year-old Thera Sanchez says she isn't the same teenager she was a few months ago. She suffers from uncontrollable body movements, ticks, and verbal outbursts, much like tourette syndrome. Things Thera once loved, like going out with friends or cheerleading, are now, she says, nearly impossible.

THERA SANCHEZ: Well, I used to cheer everyday. I would go to art class. I used to go to two art classes every day. Now I'm not in school. I was always so active, and everybody was always happy to be around me. But I don't feel like myself anymore.

REPORTER: And Thera is not alone. At least 12 teenage girls at Le Roy High School in upstate New York say they're suffering from the same symptoms including Thera's friend, Katie Krautwurst

KATIE KRAUTWURST: My days are all different. Some days I'll just start twitching, and it won't stop for 10, 15, 20 minutes.

REPORTER: Both girls have seen their own doctors and are getting treatment, but they say symptoms continue. The New York State Health Department has been looking into the case for more than three months and says, the school building is not to blame.

MAN: We have conclusively ruled out any form of infection or communicable diseases. And there's no evidence of any environmental factor.

REPORTER: The State Health Department says, each student was examined by a private doctor and given a diagnosis.

NEWS ANCHOR: But it's important to reiterate, the State Health Department says it's confident students there are not at risk because of anything in or at Le Roy High School.