Ever have symptoms that when taken together aren’t attributed to any known medical condition so you traipse from specialist to specialister and at the end of a decade you end up diagnosed with an unpronounceable name that has no cure anyway and probably isn’t even what you have?
That’s a coincidence, because that exact thing happened to Bossy.
It all began in 1994 when Bossy and her husband and five-year old son went on a trip to Florida.
You are looking at a photo of Bossy during this exact time, taken in her backyard with her Golden Retriever puppy Gracie. You see, Bossy has a history of exorcising her list of favorite girls’ names through her dogs. If it wasn’t for Bossy’s many domestic pets, she probably would have ten or eleven kids. Times three.
And speaking of Bossy in 1994, it was during this time Bossy and her son looked nearly identical:
And Bossy knows what you’re thinking. You’re thinking this doesn’t have anything to do with unusual medical conditions – but you would be entirely correct!
Anyway. So Bossy and her son and her husband went to Florida, and it was there they rented boats for an hour so they could tool around on the nearby lake. And Bossy had such a fun time there on the water, with the wind in her hair and her hair in her hair.
Then, later that night while enjoying some dinner, Bossy realized she was still feeling as though she were on the boat.
Actually, it was a more subtle sensation than the rocking of a boat. It was as if Bossy were sitting on a gently rolling dock. Or living on a well-moored houseboat. Or walking on a mattress. Or the many other examples Bossy came up with those first few days because hi have you met Bossy?
This balance disturbance continued throughout Bossy’s entire Florida vacation. But Bossy managed to stay in good spirits, where spirits equals the many spirits Bossy drank, figuring if she was going to be weaving around Disney World, she may as well be as drunk as she looked.
And then Bossy flew home. And boy were her arms tired! Of typing this health crisis post!
Anyway. Bossy flew home. And as soon as she landed she realized the dizzy sensation was gone! Days later an Ear Nose and Throat specialist attributed this shift to the change in altitude pressure in Bossy’s ears, causing her body to reset itself.
Fast forward a few years, and Bossy and her husband and her son and her two-year-old daughter were once again on their way to Florida.
This time the Bossy family took the Auto Train:
A decade of sleepless hours later, the train arrived at its destination, and Bossy disembarked with the rest of the passengers only to realize she felt as though she were still on the Auto Train.
And thus it all began again:
This time the three-hour-tour sensation lasted nearly a month — every day just like the first. It was at this time Bossy saw a Neurologist who gave Bossy a diagnosis so ridiculous, the Merck Manual doesn’t even bother with an English translation:
Mal de debarquement means a persistent sense of motion long after the motion has ceased. Most often this is associated with time spent on the water. Which was why it was so medically atypical when Bossy experienced her next episode with Mal de debarquement, which followed forty minutes on a rowing machine on that very famous lake known as Bossy’s Basement.
It was at this time Bossy ended up at Johns Hopkins:
During her appointment at Johns Hopkins, Bossy learned of the rarity of her condition, and was offered a spot in a clinical trial which included a large dose of what Bossy later learned was a seizure medication. Bossy declined.
It was also at Johns Hopkins that Bossy was first told that her diagnosis is actually situated within the painless migraine family.
Still, for a month Bossy’s symptoms wouldn’t alleviate. Not to mention the confusion it caused when Bossy frequently described her symptoms as feeling like she was still on the boat she was never on.
This is when Bossy went to an Osteopath specializing in Craniosacral therapy.
According to Bossy’s exhaustive research, where exhaustive research equals Wikipedia, the Craniosacral practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia, easing nerve passages and optimizing the movement of cerebrospinal fluid through the spinal cord, but Bossy couldn’t stop being ticklish the entire time.
But here’s one thing Bossy did gain from her visit to the Osteopath, her fifth medical appointment. He looked at Bossy across the desk and he asked, “What do you think it is?”
Not that Bossy had a definitive answer outside of thinking her condition was related to the sustained wavering of her vestibular hair cells stimulated by fluid’s movement in the semicircular canals within the ear — except to think the condition also had to be activated by a perfect storm of hormones and a spinal positioning component and overall fatigue.
In other words, Bossy occasionally has what she refers to as a Mygraine.
Still, Bossy thinks there’s power in asking the patient that direct question, as sometimes we know what we have even though we’re afraid to confirm it, or it’s difficult to confirm.
In whatever case, Bossy can sum up her experience with her thankfully fleeting medical condition as follows: Bossy thought she had another episode, but awoke better today.
Which is what today’s Ten-Word Challenge is all about. In exactly ten words, can you tell Bossy about weird medical symptoms you’ve had trouble diagnosing and treating? And feel free to offer responsible feedback to other commenters. Let’s get this layman’s diagnosis party started!
And be sure to check back later today for the most interesting symptoms on the web.
Bad vertigo started after chiropractic head adjustment 12 years ago.
(plus, sorry that Bossy has this – love this post! There are so many undiagnosed challenges out there that people are dealing with!)
–>I *may* drink a little much and reinjure my knee.
Too much sex with 21 year old equals back pain.
HUGS….
30 years of migraines, beginning at age 5. Cause unknown.
(Saddest part – 4 y.o. daughter is getting them too.
)
Can you break a penis? I think I did. Sorry.
Since early menopause at 42 have similar symptoms to Bossy. And depression. pills don’t work. nothing works.
Except laughing. Which makes Bossy a favorite read!!
Shin/top foot pain occurs in ski boots – excruciating
(In March it hit me so hard that I took off boot (on flat area) AND ski while attachd and then lost both. Sending 12 years old to look for both. Which embarrassment worse? Kids looking for ski/boot, me riding snowmobile w/neither?)
Avoid all types of pain because pain meds = same pain level plus nausea and dizziness – yikes!
weird skin dryness and discoloration on torso
4+ dermatologists stumped
Chronic and persistent wanting another baby. It’s a true Sickness.
Headaches, pass out, dizzy, repeat. 25 years and counting.
Fainting at optometrist’s every time. Vasovagal nerve reaction. Fun.
Check out http://en.wikipedia.org/wiki/Benign_paroxysmal_positional_vertigo
and
http://en.wikipedia.org/wiki/Epley_maneuver
In June EVERY year, I get painless FLASHING LIGHTS mygraines!
Constant side pain. No cyst, tumor, anything. Diagnosis: “overly sensitive”.
Awaking in darkness, everything appears as if through red filter.
Fibromyalgia. Perfect storm of about 27 symptoms. Shoot me now.
My sister’s body has too much electricity. Watch batteries die.
Single girl. Brand new latex allergy. Sad, itchy, gooey combination.
Chrissy, I have that too! I have a wind watch. Might be hereditary. My maternal grandfather had the same problem.
Numbness of face equals low titer chronic lyme disease.undiagnosed.
39 needles determine non-allergic rhinitis feels exactly like allergies. Fun!
Severe exhaustion, weakness. Feared MS. My thyroid was going wacko!
Somewhat paralyzing fear of disappearing roadways. Curves, altitude changes. Yikes!
Learned cool word from linguistics guy – idiopathology. Nobody else has.
Magnets any stronger than fridge-type induce sick headaches.
Undiagnosed left scalp numbness. Physical therapy only thing that helped!
Blow my nose – stuff comes out my eye. for real.
Million symptoms, MS diagnosis. Million more, Formaldehyde allergy. Both managable! (For now)
Once you have a correct diagnosis, makes all the difference!
Like BOSSY, slammed with motion/vertigo woes. I lurch everywhere.
Mild vertigo. Then again, I’m a natural blond. Dizzy girl!
Sounds like Bossy, like me, has Benign Paroxysmal Positional Vertigo.
I’ve had that. Dr adjusts the crystals in my ears.
Margarita Deprivation Syndrome, when the store’s out of fresh limes.
Chrissy#20- My sister, too. Blew many work computers, finally got anti-staticmat&chair.
For fifty years, thought I was male. All fixed now.
BPPV nonreponsive to therapy.spins 24/7 .Surgery cures. Left deaf
.Bah!
I had no idea so many people had the same electricity issue! My sister also can’t tolerate alloy silverware; she says it gives the same stinging sensation as foil on a tooth filling!
Viral labyrinthitis in 1996 – still spinning after all these years.
Benign Paroxysmal Positional Vertigo. Epley Maneuver may help. Can recur.
How interesting folks! All I get is miserable common cold.
A friend had an intestinal parasite undiagnosed. Lost 40 lbs.
Been living with non-stop Mal de Debarquement syndrome for over six straight years.
There is more information at http://www.mddsfoundation.org
nine year old with nausea in her head. neuro appointment
Have to recuse myself because I am a medical practitioner.
Very orange fingertips. Doctors blame carrots, but no.
Colette – I had dry skin and discoloration on my torso also and it turned out to be GLUTEN. Bah. Doctors were no help.
New problem: Internet induced hypochondria and whining.
41….my diagnosis 18 years ago…but now, Lyme.
Horrible whatever.
My leg is numb. 85 doctors later, yep! Still numb!
Eye migrains (auras)…blinding. If driving, get out of way.
develped sun allergy. hives every spring. doctor: grass allergy—dumb!
True story: I believed that double-basses (in an orchestra) were inaudible, and provided only a magical kind of stabilising musical force.
Age 25: diagnosed with moderate congenital hearing loss in both ears. I’d been deaf my whole life! Hearing aids demonstrated that not only are double-basses audible, but also sliding doors, car engines, birds in trees etc etc ad infinitum…
Mom stops watches. I blow out lights and appliances. Expensive.
Right hand useless. “Xray normal” End of story? For them !~!
Huge grey spot in middle of view in dim light, Macular degeneration, sigh.
I’m so sorry about YourGraine!
Dizzy for years. Diagnosis: meniere’s disease. Ear injection (!) now deaf!
OK, 30, 38, and 48 win in my book!
Hmmm, I ruin electronics and appliances too. Mainly when angry.
My woowoo friends say I need energy work, chakra alignment.
Thank you, Angela-I’ll try cutting out gluten.
Bossy is a medical miracle worker!
I don’t want to party with #30 Wendy in AZ.
20 years of sinus congestion, no known cause or cure.
#30, That’a cuz the tear ducts are connected to the sinuses. There is a little valve that should not let this happen but your seems to be defunct. Mine is too. Air bubbles come out of both of my tear ducts if I am underwater in the deep end of the pool.
Hmm. Bossy’s Mom makes me think I should get Lyme test. Live in the midst of deer herds in suburbia.
Bossy, how did you make it through a 10,000 mile no book tour road trip with this?
Blowing nose out through eyeball area, sounds like somebody was partying with Stevie Nicks, but that is just a sick joke.
First trip to Florida my college friend’s mother warned us that the strength of the tides would screw up our menstrual cycles. They lived in Fort Walton Beach area. Okeedokee. Guess we didn’t stay long enough to test that theory.
Jagged psychedelic flashes in eye – optical migraine or acid flashback?
This: Benign Paroxysmal Positional Vertigo=suckcity. Started after 3rd baby.
I’ve had this weird problem with my head for about 10 years. The doctors ask, are you dizzy or light-headed? Right after they ask if that rainbow is black or white. I don’t know; I only know my head doesn’t feel right. All the time. And, yes, I do have a problem with motion that makes me dizzy and agravates the head thing, although the head thing bothers me without motion. A friend of mine used to work in a place that studied the vestibular system, and he says that sounds like my problem. Don’t know. Haven’t had it checked out. I have Kaiser and live 3,000 miles away from Johns Hopkins. But maybe Bossy could have her vestibular system checked out. There’s my 10 words.
Had the spinning dizzies (sober) was diagnosed with “ear rocks.”
The pain caused by my family is now Mygraine Family.
Thank you, Bossy, for assigning a name for this misery.
The pain in my ass is called My Ex Family.
All else is called Perimenopause, extra men, hold the pause.
Heart flutters. Feels like I will fall over a cliff.
(seen many cardiologists. nothing.)
Sandpaper in vagina. Hot poker in cervix. Cranky nerves. Blocked.
I had migraines as a teenager – horribly debilitating ones. Then in my junior year in college, I had one incredibly bad one, with nausea and everything. And then they completely went away.
Some twenty years later while I worked at a stressful job, I experienced a kind of weird tunnel-vision thing that someone told me was like a migraine, but it only happened the one time.
Haven’t had a migraine since.
These days, my health issues are digestive in nature. I had a colectomy in late May, after a surprise diagnosis in April. It was scarey at the time, but so far everything has been OK since surgery. But I can tell that my future health issues are going to be all about POOP!
Aw crap. I blew the ten-word thing. Very sorry.
Ear rocks equal Benign Paroxsymal Positional Vertigo. Isn’t it fun? Once I knew it wasn’t a stroke It is just a pain.
I’m a serial watch-killer too! Nobody believed me. Too much electricity. I like that.
I agree with #59 look into Meneires disease. I for years had probelms with being dizzy and ringing and ears (tinnitus) and saw any doctors who kept treating it as a middle ear infection and giving me antibiotics. became allergic to penicillan
Finally changed insurance and went to a different ENT and he immediately fiagnosed me with menieres. I had three of four symptoms: tinnitus, vertigo, slight hearing loss. It was so bad at that point I was missing work because I literally couldn’t stand up and walk without looking like a drunk! Can’t remember but know I was prescribed diuretic pill and something else to reduce the inner ear fluid. Haven’t had a recurrence since and it has been almost twenty years. Meneries has no cure and can be treated as symptoms occur. Good luck!
Too much beer = achy vah-jay-jay and right leg. Whuh?
Must be careful when eating bread or rice; strangulation feeling.
NellaBean, perhaps you need Esophageal Dilatation. Common problem, easy fix.
Dizzy, crazy spinning spells. Truly debilitating. Stop taking vitamin B – went away. Started taking vitamin B again. Crazy dizziness again. Stopped taking vitamin B went away again. Something about vitamin b I think.
Weird pain always in my “ankle front”. What’s that called?!?
Can’t believe you have this, BFF does too! That means lots of road trips!
I spent years trying to figure out what I had – may specialist inlcuding a neurologist who wanted me to take seisure meds, a cardiologist that thought my blood didn’t make it back to my heart in time etc… guess what it was, MDDS, Mal de Debarquement Syndrome. I cried when I found the diagnosis because finally it was something that really fit. If it helps, it was on the show Mystery Diagnosis – because it’s really hard to define. The one thing i can tell you – if you feel better when you travel in a car and things like Xanax or Valium “slow things down or stop the dizzy” enough then sister you’re part of the club! Good luck to you and k.i.t. if this is what you have – we need support out there. kelstc@aol.com
Ocular migraine, no pain just “why is half of that object missing”. Goes away in 20 mins, but first time it happened, thought I was having a stroke – yikes.
Um, yeah… I was diagnosed with a couple of “possible reasons” for my migraines. Later, hubby left his company. We declined COBRA thinking we’d get privatized health insurance. The whole family was declined insurance because of my “issues”. I now hate going to the doctor.
#53 Janell: This happens to me too, off and on. Started happening when I was in fifth grade when I rode a bike in the sun: arms full of itchy hives. In my 20s, hiking to Cape Point in South Africa: arms full of itchy hives. All through 20s and 30s, about 2x a summer, I get hives after being outside. In my early 30s, in Disney World with family: arms and back of legs full of itchy hives. Sunscreen doesn’t help. Happens early in the season, then it just gets kind of tan and hard and no more problems. Anybody have any experience with this?
Sunlight allergy – polymorphic light eruption. Google! Also great band name.
occasional spells since teens. got bad around 45 so dizzy i could not function. dx as neurocardigenic syncope, finally took 2 years and lots of tests to get that. was so much worse at that time due to peri-menopause. last year or 2 back to occasional. 50 now. best thing i found that works? mucinex? makes no sense but it works.for me and others.
Cluster headaches.
Like amputating your own arm with no drugs.
Mind numbing itching on legs with walking or running outside.
Complicated migraine with nysthagmus. The world looks like it’s jumping right in front of you even though it isn’t.
2006: Doc #1, Viral labyrinthitis, Doc #2 BPPV, Doc #3 Painless Migraine/Meniere’s. Still have dizzy spells.
Bad Docs = Vertigo or Ménière’s disease. Suffering for years.
Dr. Zhu = pinched nerve at vertebrae #2. Immediate Relief!
(Check her out next time you visit Disney. She is that good. http://www.drzhuacupuncture.com/)
Ocular migraines. Scary the first time, but the dr. said no problem except for the nuisance of it—fun reading a menu when the migraine hits. Goes away in 20 minutes or so after travelling from one eye to the other. Weird.
#99 on August 14th, 2011 at 5:51 pm
Kristiane said:
Mind numbing itching on legs with walking or running outside.
I know this is two years later but just in case you are still experiencing this try taking a Benadryl before you walk or run. It is some kind of allergic reaction. My sister gets it too.
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