Our medical mystery

[blondee1965]

My husband has been sick for over a year now..it started with swelling and weakness and has progressively gotten worse, he now suffers from occassional severe headaches,dizziness, constant tingling in hands,at times incontinent of bowel and bladder,difficulty grasping objects and keeping hold of them, clumsiness,blurred vision especially in the left eye, memory loss,irritablity, depression,blackouts,

  difficulty concentrating and complaints of alot of pain...his left side is mostly affected by this..at times his speech is slurred his face becomes extremely "droopy", he has difficulty breathing especially at night, periodically i have to shake him to get him to breathe again, at times he is very lethargic and disoriented.

He has been through a series of test including a ct, mri, emg,

sleep apnea test,eeg, ekg, stress test, urine test, blood test a colonoscopy because his stomach was becoming increasingly enlarged.

He has been told he has an ulcer, a stroke, neuropathy and complex migraines, high blood pressure, high cholesterol but the only diagnosis they have given him was complex migraines and of course the high blood pressure, high cholestrol.

He is now on 7 different types of medicine, been through 4 doctors, 3 neurologist and in the hospital several times with no prevail.

He has been unable to work since this all started, each time he would try to go back he would swell up considerably and they would have to send him home, also his complexion becomes discolored, at times he is very pale,gray, yellow, purple, or blue.

He has become a "medical mystery."

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.

   The symptoms and story you presented are complex and there is much information that I do not have.  The symptoms of swelling weakness and pale gray complexion could signify heart problems such as congestive heart failure.  the symptoms of left eyed blurred vision, 'droopy' face, clumsy hands dropping objects sounds like stroke symptoms.  The symptoms of irritability, blackouts, incontinence of bowel and bladder with memory loss suggest possible seizures.  I would suggest that you take your husband to a major academic neurology center so that he can be worked up.  He will require at least a MRI to evaluate for strokes, an EEG to evaluate for seizures, a sleep study, EMG and sutonomic studies, as well as a lumbar puncture.  You mentioned these tests, but not their specific results, but since he does not carry a diagnosis that can expalin all of his symptoms these test will likely need to be re-done in expert hands.  He will also need metabolic tests to evaluate for genetic diesease such as the mitochondrial cytopathies (such as MELAS, MERFF, etc.)

I hope this has been helpful.

[nerve damage]

I would suggest going to an endocronologist.  Some of these symptoms are similar to my father's situation a number of years ago when he had Cushing's.  Alot of the symptoms are not what he went thru.  Regardless, if it were me, I'd have a hormone work up done anyways.  Hormones out of wack can do odd things to your body.  Has he been tested for Lyme's disease?  The tests aren't real accurate unless they have improved in the last few years.



Good Luck,  I had a daughter who was a medical mystery and was incorrectly diagnosed with a brain tumor..thank God.  I have a root canal screw up and had to educate myself 'cause the dentists sure weren't going to tell me the truth.  



I know how frustrating it can be...but I'm a firm believer in that you are your own best advocate...

[JDHAWK]

I am sorry to read about your husband.  I have small fiber neuropathy with diabetes and struggled to get dx.  One of the illnesses they wanted to rule out with me was Amyloidosis.  I thought this illness should be ruled out when I read that your husband was experiencing swelling and high cholestrol.  The swelling may be happening because of kidney problems.  Amyloidosis is a very rare illness and maybe you should ask your neurologist about it.  I hope the doctors can dx your husband so he can receive the treatments he needs.



All my best,



Hawk1

[caregiver222]

You need to have a physician rule out a slow Lobar intracerebral bleed, often cause by a simple lack of vitamin k in the diet.It is impossible to make a diagnosis from apost, however the slow progression and symptoms are a big yellow flag.

[mineandours]

Check out neurological Lyme disease. It creates many "Medical Mysteries", also.  Here's a symptoms list for you. Good luck and I hope you get some answers soon. Carol



Musculoskeletal System

Joint pain or swelling or tenderness

Stiffness of joints, back, neck

Muscle pain or cramps

Bone pain



Neurological System

Tremors or unexplained shaking (especially at night)

Burning or stabbing sensations in the body

Weakness or partial paralysis/stroke-like symptoms

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Sudden jerking of fingers or entire limbs

Pain in spinal column



General Well-being

Unexplained weight gain, loss

Extreme