so many symptoms

[sorydra]

hi everyone,
i have so many symptoms that just don't seem to fit anywhere.  this has been going on for a few years & i think i have the pattern of a typical flare down. they can last anywhere from 6wks to a few days.
1- emotional instability
2- pain in right kidney area, right side, right lower back
3- fatigue
4- loss of appetite and food aversions all the way to bulimia/anorexia type actions  
5- hallucinations
6- stomache tenderness
7- stomache pain(thought once i was having an ectopic pregnancy)
8- cloudy urine
9- horrible leg pain that i can only describe as if they had been crushed.  i am a dance instructor this is nothing like muscle soreness or a pulled muscle.  
10- profound muscle weakness (can't walk or sit upright)

other general symptoms are elevated heart rate (take propanolol for this), myoclonus, left side of face droops(?), trace blood in urine, slightly elevated ck levels, muscle stiffness, night sweats, difficulty swallowing, vision disturbances, migraines, interstitial cystitis.  

tests:  t-spine & brain MRI, several lupus, wilsons, myasthenia gravis, EEG, EMG, porphyria

any ideas that anyone has would be greatly appreciated.

[mel445]

I would also like to point out that maybe you should go back to the doctor. When it comes to your body and health and we feel something is wrong....there usually is. Do not feel like a hypochondriac . You are just trying to find out what's wrong. I'm not a doctor and I would not put off going back to see your doctor.I'm sure things will get better. Have you thought about seeing another doctor? Sounds like they have just have let everything go. I would stay on them till they find out whats wrong. That's how they learn more. They don't know everything. They don't see everything. Don't forget that they work for you.I feel like you need more help than what you are getting.

[maatson]

In fact these are the classical symptoms of CFS! (But the diagnosis is only by exclusion of other organic syndromes).

[sorydra]

i have lots of blood work done every year, the ck levels included. always just slightly elevated, not enough to point to anything.

  i drink lots of water, but did not know about the caffeine(i have a cup of coffee every morning). so that is something that i will try.

i do have interstitial cystitis, but urologist said i shouldn't always have trace blood.  but wasn't worried because it is trace.

definitely do not take pain meds  because they all make me throw up or itch.  try to control pain by yoga.  if too bad i take aleve and flexeril.

the fever is definitely my fault, docs always ask, but i forget to take temperature.  so that is a possibility for the hallucinations that i will make sure to check.  

so mel, yours was kidney infections?  

-maatson, chronic fatigue never occurred to me because i didn't think the symptoms could wax and wan like mine do.  i will look into that too.


  

[mel445]

Ok this is what I think you should do.... So you said you ck was slightly elevated. Did you know that that will cause you to have extreme muscle weakness, fatigue, and leg pain. Also your a dancer so if you strain a muscle which I'm sure you do a lot that will cause your ck and cpk level to be elevated. Your Kidney is also a muscle and cloudy urine and blood traces found your doctor needs to send you to a urologist to figure whats going on. Hallucinations could be caused by fever (even if you don't think you have one you may) caused from kidney infection. Depending on how long you have had this going on your kidney could be a little damaged which could also slightly elevate your ck or cpk. About the no eating honestly if I was in pain all the time I could not eat either. Stomach pains could be caused by Kidney infection and not eating. To make your ck and cpk level drop it is very important to drink lots of water and absolutely NO CAFFEINE!!!!!!!! I would also have your doctor run your ck and cpk levels again and also do a urine test done again to check for infection. Why they have not figured this out is beyond me???? Also if you are taking any pain meds you need to talk to your doctor about lowering the dose this could also lead to your ck and cpk levels to rise and kidneys are the first to go. But thats none of my business. I wish you luck and please go see your doctor. Amazingly enough you have met someone that this has happened to. I had the same problem two yrs ago.

[maatson]

'Chronic fatigue syndrome' is a possible fit.

[sorydra]

i have seen my family doctor, rheumy, and neuro.  family doctor thinks it is MS w/o lesions.  but she focuses on acute care & won't see me for anything ongoing.   she feels i need a specialist.  rheumy is a very kind doctor & wants me to be comfortable, but not interested in finding a dx.  neuro was certain it was porphyria but at first appt did not know how to test for it.  told me to start a high carb diet to treat & at 1 month follow-up would send me for testing.  test was negative, afterwards he really had no interest.  said myoclonus was from meds from pmdd & conveniently forgot the rest of my symptoms.  i have full blood work-up 1 1/2 to 2 yrs.  only thing that ever shows is slightly elevated ck & always have trace blood in urine.  i have considered trying to find an internist, but at this point i am afraid to look like a difficult patient or hypochondriac.  nurse practitioner at family doc thinks eventually lupus will show in blood work.

thanks

[mel445]

DID YOU WRITE THIS LIST DOWN AND GIVE IT TO YOUR DOCTOR? DID HE SEND YOU TO A SPECIALIST? HAVE YOU HAD A FULL BLOOD PANEL DONE? I THINK YOU SHOULD HAVE MANY DOCTORS WORKING ON THIS TOGETHER. WOW I'M SORRY SOUNDS LIKE YOU HAVE A LOT GOING ON. GOOD LUCK

[drewlevas]

Have you been check for Lymm? Not the simple test only, because if you took any antibiothique it not going to be concluant, but there is more test that can be done, you'll find the names on google and you can request it to your doctor.