My wife is sick, we don't know why, and we don't know what to do.
May 4, 2018 11:09 PM   Subscribe

My wife and I have been together for four years now. Before we met, she had had a history of mild but chronic odd symptoms: reproductive issues eventually leading to a tubal ligation and endometrial ablation, intense insomnia, near-daily hot flashes (she's nowhere near menopause), muscle cramps, and a lot of nerve tingling, pain, and numbness. After years of frustration, she had stopped trying to see doctors to address these issues; I convinced her to get medical help. Now things are getting much worse, and we don't know what to do. Help?

Four years later, she has seen a new primary care physician, who came highly recommended by my mother, a chief nursing officer of a major research hospital. Her PCP has sent her to consult with 1) a neurologist, 2) a spinal surgeon, 3) a rheumatologist, 4) a dietitian, 5) two physical therapists, 6) a massage therapist, 7) an endocrinologist, 8) a sleep specialist, and maybe others that I have forgotten. All of their responses have been, "Yep, that symptom is real, but we're not sure what is causing it, so you should talk to your doctor about it". Her tests have all come back clear or inconclusive, her MRIs don't raise eyebrows, and she keeps getting new prescriptions to deal with symptoms.

But the symptoms are getting worse, fast. Some motions cause crippling muscle spasms, she's randomly out of breath, she breaks out in hives, was hospitalized for a bizarre anaphylaxis episode that we still don't know the cause of , and has episodes of intense, radiating pain in her back and torso. Meanwhile, she is gaining weight because the muscle cramps make exercise very infrequent, which is frustrating to her and is not helping her symptoms or her self-esteem. She's on an increasing number of medications, which is wrecking havoc with her emotional health; she's been experiencing crying episodes and anger episodes that she is very embarrassed by. But the stress of these issues, as well as the impact on her work, social life, and the rest of it is really grinding down her resiliency and naturally positive attitude. Last night she had a totally understandable meltdown as this all stacks up. She said something really striking: "I don't want to be one of those people who counts their good days".

We want to know what's wrong. We can't figure out our next steps, and things aren't getting better medically. What we need is either, A) A fix for whatever is wrong, B) A diagnosis, so we can identify resources and find help, or D) a new robot body and a good mechanic.

What should we do to find solutions? Are there doctors or hospitals that specialize in hard-to-diagnose diseases like Dr. House? That's... pretty much the only idea I have left, and our medical network seems pretty out of ideas, too. Have you been in a similar place? How and did it resolve, and is there light at the end of this tunnel for us?
posted by anonymous to Health & Fitness (31 answers total) 8 users marked this as a favorite
She's on an increasing number of medications, which is wrecking havoc with her emotional health;
The first thing that sticks out to me is this line. Doctors can overprescribe when they're not sure of what's going on. Maybe you could start with a review of all her medication to ensure that some of her new symptoms aren't side effects of some new medication.
posted by peacheater at 11:17 PM on May 4, 2018 [36 favorites]

I had really bad pain and was on track for surgery until one of the last specialists I went to see (the surgeon!) prescribed physical therapy, an anti-inflammatory diet, and some supplements. Guess who didn't need surgery after all? So, every doctor will say something different until the one who cures your wife.

That sounds like a lot of meds and I also wondered about side effects.

I would start trying whole body solutions. Your insurance probably doesn't cover seeing a really great acupuncturist or osteopath, but I would start there. This is SOUNDLY in their wheelhouse.
posted by jbenben at 11:25 PM on May 4, 2018 [4 favorites]

The Mayo clinics are known for doing comprehensivebworkups of hard to diagnose patients.
I would add an allergist, and a pain management specialist to her team. Also a therapist.
posted by SyraCarol at 11:37 PM on May 4, 2018 [13 favorites]

This happened to me and I was eventually diagnosed at a medical school. If you can name your general geographic area (like West Coast), you'll get better recommendations of specific places to try.

Seconding a therapist who specializes in chronic illness, for both support and ideas about where to focus resources.
posted by likethenight at 12:08 AM on May 5, 2018 [3 favorites]

This sounds really overwhelming, for both of you. Would it be possible for her (or ideally both of you) to take paid time off work to focus on her health? Appointments etc take up so much time and energy I am surprised she has anything left for work anyway.

I would also favour asking what the consequences are of going off all medication for now, as mentioned side effects and weird combinations can happen so if it possible to eliminate medication as a possible source of symptoms it may help.

You mentioned exercise as an issue, is she able to swim (in the shallow end, and with someone that know she may have a muscle cramp)? That may be a low impact exercise that may help. You can also have a private yoga teacher for very gentle lessons that accommodate her needs (and the mindfulness is helpful too).

"Women's issues" have notoriously been ignored/minimised by the medical establishment. I would look into whether a major urban centre near you has a Women's Hospital with university/research affiliation. Alternately, look to local midwifery groups as they often have a good line on which doctors/institutions use a holistic view of health and take women seriously.

And I n'th the therapist idea. NOT because the illnesses are in her head but for two reasons - one, being chronically ill really sucks and IS hard and she needs to be able to vent to someone other than you about being sick without making your relationship all about her illnesses, AND, two, way too many doctors hear a woman complain of an illness that may be linked to their reproductive system/hard to diagnose and they jump to the "it must be all in your head" conclusion. If she is proactive in already having a therapist who is able to, in writing, discount the idea that she is mentally ill, it saves her from wasting time with each doctor where she has to prove she is sane.

Good luck. I swear there needs to be a new career of private medical advocates who will accompany patients to a variety of doctors to "force" the doctors to take patients seriously while also providing emotional support to the people struggling with their their illness and the lack of diagnosis.
posted by saucysault at 12:13 AM on May 5, 2018 [21 favorites]

This is a bit wildly from left field, and may have been something you've already considered, but what jumped out to me in your description of her symptoms was how much it sounded like Mast Cell Activation Syndrome. If it's not something that's been looked into before, you might want to investigate in that direction a bit.
posted by Acheman at 12:37 AM on May 5, 2018 [7 favorites]

sounded like Mast Cell Activation Syndrome

According to that bastion of medical publishing (/sarcasm), wikipedia, it does seem to have a range of correlating symptoms with your list of symptoms. And considering her medications, this stood out in the triggers list.
"Fillers, binders and dyes in many medications are often the culprit in causing reactions, not necessarily the active agent, so alternative formulations and compounding pharmacies should be considered."
posted by Thella at 12:53 AM on May 5, 2018 [3 favorites]

A few reasonably (?) noncontroversial ideas:

1. Talk to your pharmacist about your wife's symptoms, and the effects since the addition of all the medicine. They understand the chemistry and have computer programs that can cross-check whether some combination is making things worse. Further, they may even be able to advise, off the record, what pills she might consider stopping.

2. Get a script for physical AND occupational therapy, and try to see whoever has the most degrees and good references. Then see if they have any ideas about exercise for pain relief.

3. What you really need right now is a good diagnostician, driven by fascination with the field of medicine, who can help you figure this out. The founding doctor of this integrative clinic practices both conventional and alternative medicine. He is also a first-class diagnostician and prides himself on it. You might want to give them a call.
posted by Puppetry for Privacy at 1:33 AM on May 5, 2018 [10 favorites]

Good advice above, and also: you sound like you are being an understanding, supportive spouse who takes their partner’s undiagnosed symptoms seriously. You are worth your weight in gold in this situation. Find the support *you* need to keep it up, no matter how long the slog with the medical profession is and no matter if there is a tidy diagnosis and treatment on the horizon.
posted by LadyInWaiting at 3:57 AM on May 5, 2018 [14 favorites]

This new series from the Times and Netflix is interesting because they crowd-source for suggestions on unsolved illnesses. The one in the article linked has similarities to what you describe about your wife. The Times Facebook page on this has immediate feedback, it was posted 4/26/18.
posted by waving at 4:55 AM on May 5, 2018 [9 favorites]

You know the old parable about the blind man and the elephant? Seeing a million specialists can feel like that, because everyone only focuses on their own specific area. Is the PCP just a source of referrals, or are they actually allowed to see her for a reasonable length of time? (I ask because many health centers only allow PCPs to spend 15 min/patient, which is ridiculous for anyone but especially in a complex situation like this.)

I don't know from Adam about mast cell activation, but it did make me think of alpha-gal allergy (aka the meat allergy) transmitted by the Lone Star tick. It was only described about 10 years ago, and hasn't gotten much attention, so many medical professionals aren't even aware of it. (Heck, I learned about it from a Radiolab episode, and I had trained at the place where it was discovered!)

If you do end up looking for a new PCP or comprehensive clinic evaluation, be aware that the "unexplained symptoms" arena is RIFE with frauds who try to take advantage of frustrated people. Quackwatch still retains its 1996 interface but is updated pretty regularly and holds no punches. I agree with the suggestion for a medication review with your pharmacist, as well.
posted by basalganglia at 5:22 AM on May 5, 2018 [3 favorites]

While reading your question, I had to double check and make sure I hadn't gotten married again. I'm the queen of weird medical symptoms with no apparent explanation. For example, I haven't been able to walk more than 10 feet unaided in about four years, but nobody can tell me why. I've got 20, 25 doctors across five counties, and I take somewhere around 30 medications, vitamins, and supplements daily.

I don't have an answer. I don't have a solution. I don't have a "it gets better." What I do have is this: with some help from a therapist, some mindfulness, some self-care, and some self-giving-a-break, it gets easier to deal with. There are support groups in meatspace and online for people with chronic illness. There are 101 million coping mechanisms. There are places to vent and scream and cry and help others and be a person who isn't all about weird medical stuff. She just needs to find the ones that are right for her.
posted by The Almighty Mommy Goddess at 6:02 AM on May 5, 2018 [5 favorites]

Possibly a long shot - I don't know what fraction of patients they accept - but this might be a good fit for the NIH undiagnosed diseases network if you're in the US.
posted by cogitron at 7:11 AM on May 5, 2018 [2 favorites]

From your detailed knowledge, it sounds like you may already be doing this, but the best thing you personally can do to help her is go to appointments with her. with her consent, obviously, but DO NOT just take her there and wait in the waiting room; go in to the exam room with her. Don't talk for her but pay close close attention to any time the doctor seems not to have heard her or doesn't answer a question or doesn't do what you came there for, and then speak up. be the asshole. be the demanding noncompliant one so she doesn't have to be. this works best if you and the doctor are both men but is invaluable no matter what gender you and they may be. If her doctors are as attentive and respectful as could be, still go with her to write down everything they say so she doesn't have to struggle to remember (being distressed makes it harder to retain details or interpret the doctor's attitude/level of investment or dismissiveness.) going in with a specific question and coming out without an answer is so demoralizing, she needs a partner to be relentless.

this helps so much. being the patient and the patient's advocate is two jobs and for one person to try to do both is taxing, frightening, and exhausting no matter how well it goes. again, you sound like you might already be doing this. but it's important.
posted by queenofbithynia at 7:17 AM on May 5, 2018 [10 favorites]

You've hopefully already eliminated this as a possibility, or one possibility, but there is a subset of patients whose B12 levels test in the normal range (i.e. greater than 200 or 250 depending on the lab) but consistently below 400 who still experience symptoms of B12 deficiency. I had all sorts of issues, including peripheral nerve damage (tingling, numbness), balance issues, etc. that were resolved by a course of B12 injections after never testing below 200 but never above 360. B12 and folate deficiency can also create fertility issues. I agree with posters above that the pile-on of drugs to manage symptoms may be implicated in the "far worse" you're talking about.
posted by blue suede stockings at 7:29 AM on May 5, 2018 [4 favorites]

If I were in the US (I assume you are, because I can’t imagine a GP in a single payer system making all those referrals), I’d go to the Mayo Clinic or Johns Hopkins.

(Also, just a thought - neuropathy has been associated with some antibiotics - rarely, but still - like Macrobid and some in the fluoroquinolone class, both of which are often prescribed for UTIs [a common affliction in women] among other things. Some of these new antibiotics have the ability to get into the DNA of bacteria, and can penetrate the CNS.)
posted by cotton dress sock at 7:31 AM on May 5, 2018

Strongly suggest Mayo Clinic, and they're in-network for an awful lot of insurance plans specifically for this sort of problem -- where you're working with a dozen doctors and can't get a firm diagnosis and the situation isn't improving.

Try them even if you have to travel -- I've known several people who went up to Minnesota for two weeks for a comprehensive workup, finally got a diagnosis, and then Mayo was able to work with their local doctors on a treatment plan.

(Your insurer may require you to get permission from them, but Mayo allows self-referrals, so you can just contact them and get started.)
posted by Eyebrows McGee at 7:31 AM on May 5, 2018 [3 favorites]

Nthing, talk to your pharmacist if she's on more than one medications (that includes supplements & OTC stuff). Not saying it's the cause, but some meds don't play nice with each other or even cancel/minimize the effect of another, even something as simple as when & what you take them with can mess them up. Make sure to sit down with them & really go through the list, not just a quick glance a the counter as you pick them up. My mothers heart meds, have to be carefully balanced with her kidney & anti stroke meds, have to be balanced with her insulin oh and her osteoporosis meds, her pharmacist is brilliant and has caught a couple of times dosages needed to be altered or alternative meds used. In consult with her doctors of course. Not saying it's the cause, but if they aren't helping the symptoms like they should that's where I'd start.
posted by wwax at 8:35 AM on May 5, 2018

Mayo is great. I know someone with autoimmune issues who went there, discovered it was the result of a bizarre bacteria, and was cured. I also know myself who went there and have 3 different specialties collaborating on my connective tissue disease case involving random breathing problems, hives and other issues.

I'm assuming your wife is supplementing magnesium in food, pill form or Epsom salt baths. Of not, I highly recommend it as it has helped with muscle cramps, and the risk is minimal as I understand it.

Also do what you can to rid the environment of potential toxins. Mold, chemicals, food dyes, polyester and other synthetic clothing. For a while I had to sit on a cotton sheet because our new couch was giving me hives.
Possibly try eliminating gluten? I will warn you that allopathic doctors don't seem to consistently see a link between inflammatory foods and medical symptoms but there is a ton of anecdotal support for limiting dairy, gluten and other things depending on how strict she wants to be.
posted by crunchy potato at 9:20 AM on May 5, 2018 [1 favorite]

I agree that there are a lot of drugs and docs and this can cause problems. Just FYI,there are two kinds of medication reviews your pharmacist can do: simple review at time of fill and pickup, which looks at major issues that have been identified through initial testing of the drug and reports from users; and comprehensive medication review (or management if it is ongoing as per wwax’s mom’s situation; she is clearly under the care of a person doing CMR for every patient). Comprehensive med review/management is an area of pharmacy that requires additional specific training. It became a requirement for some Medicare plans in 2012 and so some HMOs will also pay for it (it takes a few hours to do one initially and an hour or so per new prescription to do it ongoing) and looks at all possible issues, by having the pharmacist examine basic science research about each drug’s mechanism of action and chemical shape, and looking for all potential interactions whether major or minor. So ask your pharmacist at next pick up to schedule and conduct a comprehensive medication review. If they do not offer this service, the pharmacy should be able to find somewhere that does, or your doc can help identify one too.
posted by holyrood at 10:52 AM on May 5, 2018

Has she had her gallbladder ultrasounded because I had referred pain in weird places from my gallstones. I was effectively disabled for years until a couple people suggested gallbladder and it turned out to be chock full of stones. Having it removed relieved pains I'd been having for a decade.

Nthing doing a comprehensive medication review, including OTCs. I recently had to discontinue my allergy medications because the side effects were worse than the symptoms.
posted by Jacqueline at 11:32 AM on May 5, 2018 [1 favorite]

If the ablation was done for endometriosis, the lining can grow back, and ablation doesn't treat any endometrial tissue growing outside the uterus. Some of the symptoms you list -- pain (esp. back/torso), muscle spasms, numbness, breathlessness -- can be caused by this tissue and any adhesions. Endo-influenced hormonal imbalances could be triggering the hot flashes. Some patients also have the hives you mention, as autoimmune urticaria.
posted by Iris Gambol at 12:15 PM on May 5, 2018 [4 favorites]

Hi everybody, this is the OP. I really appreciate everyone’s feedback and support! You’ve given us a lot to think about. I want to provide some more info and clarifications:

Overprescription and drug interference: thank you everyone for pointing this out. She didn’t start getting on heavier drugs until recently, but we will definitely do a pharmacist consult.

Mental health therapy: we’ve both had therapists for a year now. It helps. She does have a history of child abuse and trauma, and we’ve factored that into our thoughts, but neither her medical or psychological professionals believe that psychosomaticism is a root factor here. We haven’t encountered too many people who don’t believe her, they just don’t have answers or solutions. With that said, depression and anxiety are definitely not helping; she’s on Zoloft, which seems to have mildly improved some things, but is not playing well with her new prednisone prescription, so we’ll get that looked at next week.

Pathology: we clearly don’t know what’s at fault here, but I can provide some more specific information. Her mother is deceased, but had many of the same symptoms: chronic muscle tension and pain, ‘pinched nerves’, persistent hot spells, and issues in the cervical region of her spine. Her mother died of alcohol-related issues resulting from self medication, so we’re trying to step ahead before the pain makes that look attractive. Her maternal aunt and grandmother share/shared similar issues, with milder presentations. So we believe this to be hereditary, or if infectious, resulting from an infection contracted before the age of 5, when she moved a thousand miles away from her mother’s hometown. Her mother’s side of the family is notoriously scrawny, indicating that weight was not a factor in their cases.

Other symptoms that weren’t mentioned in the OP:
-moderate to strong pressure on her skin or muscles, such as massage, results in histamine-like reactions between 1-3 days later. These include hives, swelling, redness, bronchial irritation, and tightening of the throat. We’ve had success with benadryl, and she was prescribed an epipen by the allergist who found evidence of allergies but couldn’t identify a particular allergan.
-GI issues. She has a lot of GI cramps and diarrhea, which is not helped by the quantity of magnesium she’s taking. We went on FODMAP last year to identify foods that were causing issues, and we found some (dairy, raw onions, garlic), but I suspect we missed others.
-Consistent fatigue. Who the hell knows if this is pathological or just a result of stress, but she is very tired much of the time. Though she still struggles greatly with insomnia, after she’s fallen asleep I’ve seen her sleep for nearly 20 hour sessions. She believes this to be her body trying to catch up with sleep; she usually averages about 5-6 hours.
-Physical fitness and conditioning: So I’m a healthcare administrator, working in a rehab setting, with a mental health background. When we first encountered these issues, I thought a good exercise program and some counseling would be the ticket. I have since found that exercise on more days is genuinely inaccessible for her. Recently, we were walking on a beach, and she started taking these tiny shuffling steps because her legs hurt. I was a little annoyed, because of course sand makes my legs hurt too, but that’s just part of exercise. But when I looked down, she had charleyhorses the size of my fist in both calves, and was in tears trying to get off the sand. We both agree that she needs to lose weight to feel better, but though we are working on going pescatarian and generally improving our diet, we don’t know good ways to lose weight that don’t count on walking, swimming, etc. She just can’t do those consistently, though we try to take advantage of good days; right now, her legs are okay though her back is a mess, and she’s working on doing laps of Main Street, which is nice and flat. Any kind of incline triggers the cramps. She’s taking 600mg of magnesium a day and still experiencing these cramps. She recently missed a few days of magnesium and was unable to work due to the spasms in her arms and shoulders; I could see them under her skin from across the room.

We will definitely consider a trip to Rochester for the Mayo Clinic! We are located in Seattle, and she sees UW affiliated doctors, but there is no speciality hospital for women or ‘weirdness’ around here. On that note, we most frequently travel to Southern California; is there anyone in the LA/SD metro areas that have the same reputation as the Mayo Clinic or Johns Hopkins?

Thank you so much for listening to me. I know that this is just a lot of stuff for a thread, but honestly I needed a place to state the whole thing at once, and that along has been very helpful. She is now at the point where she is spending more of her time trying to work around the issues than not, and it’s scaring her, especially in light of what happened to her mother: she wound up homeless, with multiple drug and alcohol problems. This would never happen to my wife; we have resources far beyond what her mother ever did. Still, it’s very scary, and we know that if we don’t deal with it she may wind up past the point of intervention. I work in rehab, and I know how incredibly difficult it is to regain baseline function; we don’t want it to get any worse than it is. Thank you, everyone, for your help and advice.
posted by Darn those sockpuppets at 12:40 PM on May 5, 2018 [6 favorites]

So IANAD of course, but I do have an extremely rare autoimmune condition that often has symptoms that sound very like your wife's (hives, muscle pain, fatigue). It's called dermatomyositis, and it mainly attacks the skin (derm) and muscles (myo). I "lucked out" and only get the hives/rashes, but in my reading I always find descriptions of the muscle issues that occur for many patients.

When it attacks the muscles, it's considered a degenerative condition, and it often results in the kind of muscle pain, weakness, fatigue and post-manipulation reactions you are describing above. It can also cause difficulty swallowing because it can affect any muscle, including the esophagus/throat muscles. It is notoriously difficult to diagnose, as the "connective tissue" autoimmune conditions all kind of run into one another. There's no cure so far, but most people don't die of it, and there are a variety of fairly successful treatments for the symptoms (like oral steroids, drugs like methotrexate, or regular IVIG infusions.)

You mentioned your wife has been to a rheumatologist, and that's the kind of doctor that usually treats dermatomyositis - so maybe this has already been considered and discarded by a professional. But I just thought I'd throw the thought out there in case it rings any bells for you or your wife. (Note: Juvenile dermatomyositis is more common than adult dermatomyositis, but the symptoms and course of disease are different - so if you look into it, be sure you're looking at adult case studies, not just kids.)

Good luck to you both - I hope you find out what's causing her issues, it sounds incredibly frustrating and upsetting.
posted by invincible summer at 2:46 PM on May 5, 2018 [2 favorites]

Meanwhile, she is gaining weight

...she’s on Zoloft

....We both agree that she needs to lose weight to feel better, but though we are working on going pescatarian and generally improving our diet

I gained 60 pounds in about a year on 100 mgs of Zoloft, and lost it all within 9 months of going off it. At the time I was taking it, Zoloft was touted as weight-neutral but I believe it's now recognized as a drug that causes weight gain in a not-insignificant number of people.
posted by mrmurbles at 4:57 PM on May 5, 2018 [2 favorites]

he best thing you personally can do to help her is go to appointments with her. with her consent, obviously, but DO NOT just take her there and wait in the waiting room; go in to the exam room with her. Don't talk for her but pay close close attention to any time the doctor seems not to have heard her or doesn't answer a question or doesn't do what you came there for, and then speak up. be the asshole. be the demanding noncompliant one so she doesn't have to be

This is what I was going to suggest. Being present, taking notes, and (when necessary) being a bit assholeish is huge. And be quick to fire doctors who don't take her seriously or who just aren't useful.

Good luck! The process of getting ambiguous medical issues diagnosed is a tremendous pain in the ass and the system makes it far harder than it should be.
posted by Dip Flash at 8:45 PM on May 5, 2018

I also came to recommend the Mayo Clinic, and just wanted to add that they have locations in Arizona and Florida, too.
posted by MexicanYenta at 10:16 PM on May 5, 2018

I was diagnosed with an autoimmune disease at age 32. It had probably been disabling since age 27. I've always been seronegative - I was diagnosed based on my symptoms and response to highly specific drugs, not on the disease specific specific antibodies. My symptoms were amazingly similar - stage IV endometriosis requiring a hysterectomy, chronic hives, my feet being so stiff I couldn't touch my ankles to the floor, migraines that would last for literally months, anaphylactic reactions.

I found a doctor who took me seriously, a rheumatologist. He told me that he thought I had an autoimmune disorder, that nothing else could explain the levels of inflammation in my body, the hives, the reactions. It wasn't normal. Even with inconclusive blood results, he put me on the strong rheumatoid arthritis medicine. I got better. For 9 months, I got better and better every day, until I needed less pain meds and then no pain meds at all! They had barely worked, anyway. I had rolled into his office in a wheelchair, things were so bad -- when I came in for a check up lately, I was able to walk! My doctor said that my response to the medication was "diagnostic." i.e., I wouldn't respond that way if I had any other malady.

My case illustrates that 1) doctors really do ignore women; that took 6 years of progressive disability to try any treatment -- you can give your wife a great gift if you corroborate what she says, no matter your own gender and 2) diagnosis is an art and science, not always reflected in lab/radiology results; mine are negative and high in non specific inflammation, such that I needed a doctor willing to probe clinically.

I am kind of "meh" about the Mayo clinic for issues like this. I've had friends go there and end up in the mental hospital part, because they are so intense and kind of pushy? Pretty hard to navigate for a chronic illness patient. When I needed heart surgery, they saved my life, but I'm more of the mind that this sort of thing means you need a doctor who will do ongoing care and diagnosis. It's not like you need one procedure and out.

I'm so sorry you're going through this.
posted by sweltering at 10:06 AM on May 6, 2018 [4 favorites]

I'm not sure where you're located, but you may want to check out Dr. Allan Warshawsky. He's an MD who's gone holistic, and while some of his stuff seems a bit woo, he is definitely intelligent.

I'm mentioning him because my sister-in-law had a whole bunch of weird symptoms arise unexpectedly (nauseau, unexpected panic attacks) and after inconclusive results from several different doctors, Dr. W figured out that she had both Lyme disease and an amoeba (she's been treated for both and is now fine). I found it pretty remarkable that he was able to piece together those two things from her symptoms.
posted by taltalim at 8:47 PM on May 7, 2018 [1 favorite]

Popping in to suggest a viewing of the documentary "Unrest" (streaming now on Netflix and possibly on your local PBS station) and connecting with one of the patient advocacy groups out there -- it is really hard, what you're going through, but community can help.
posted by sockpuppetryarts at 8:53 AM on May 8, 2018 [1 favorite]

I'm so sorry you and your wife are dealing with this.

I'm late to the party but wanted to weigh in on her use of Zoloft. Zoloft can definitely cause or aggravate weight gain and it's worth exploring other options to treat her very understandable feelings of depression. I'm not a psychiatrist and am not in a position to recommend drugs for her but she might want to consider talking to her provider about going on Welbutrin/Buproprion, a very effective anti-depressant that has a side effect of weight loss.
posted by foxy_hedgehog at 4:13 PM on May 15, 2018

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