707136 tn?1229029245


Hello, 19 year old female here.

I have been having various symptoms for years now, and slowly doctors are diagnosing specific areas, though symptoms and persisting and no one has been able to tell me what is wrong.
The doctors constantly order blood work and the only abnormal finding has been extremely high levels of potassium at one point.

I'm sick of suffering, and I've heard stories of medical forums helping, a message being read miraculously by the right person at the right time. Figured i'd give it a shot.

19/F, height: 5'4"  weight:  125 (on average)

Brief medical history:
Age 14:
Underwent two spine surgeries, both fusions for scoliosis.

Age 15:
Diagnosed with Gangleo-Neuroblastoma, right adrenal gland removed completely.
Cancer found accidentally in a catscan, pain from ruptured ovarian cysts.

Age 18:
Gall Bladder removed laproscopically for gall stones, cholesterol.

Other information: Ovarian cyst on right ovary has remained for almost 2 years now, not growing fast at all. Doctors said that it most likely isn't cancerous.

The constant symptoms ive suffered with for about 3 years now include:

General Fatigue-lasts for days at a time. Not caused by depression
Random fevers, average temp of 103
Sharp abdominal pain, comes and goes, not associated with indigestion
Body aches, stiffness, specifically when awake for more than 15 hours at a time
Swelling of joints with weather changes
inconsistent blood pressure
random bouts of confusion
Bloody nose
Constant nausea, typically in the morning.
Rashes any time i'm exposed to heat, not related to dehydration
Excessive body hair growth (following the removal of adrenal gland)
Weight gain/loss without change in lifestyle or eating habbits

With these symptoms doctors have been checking one at a time, which is how each one of my prior diagnoses had been found.

My most recent symptoms (The past 6 months-1 year) are what scare me, these include:

Lymph nodes as well as glands swollen (for about 3 months now without catching a cold/virus...)
Random hot flashes, chills and high fevers with no other symptoms
Sporadic body rashes
occasional coughing up blood
Inconsistent bowel movements, constipated for days at a time followed by days of diarrhea
Excessive fatigue
Random swelling of the right side of the abdomen, to the point where i appear to be atleast an inch or two thicker on the right side until the painful swelling goes down
Sudden excessive sweating
Skin becomes blotchy with blue/red/purple blotches any time i go from indoors to outdoors
Tingling sensation typically in my hands and left leg (only my left leg)
Bleeding gums for about 6 months now that will not go away
(Also had chronic ringworm on my stomach for 9 months that FINALLY went away with the medication)

Even more recent, within the past month:

Excessive and easily bruising
(most frequently on thighs)
Constant bleeding, cut easily and ive noticed cuts dont heal as fast
Abnormally dry skin as well as abnormal acne breakouts
shortness of breath with increase of energy (weird.)
over sensitivity to light
Increase in libido/sex drive
increase in frequency of high fevers
face often overheats

Ive also noticed that along with turning blotchy and red whenever my body experiences even a slight temperature change, i get cold TOO easily and sometimes if it's REALLY cold i wont realize it. I will be able to stand outside in zero degree weather in shorts and a tank top and feel as if im on fire, where anyone else feeling my skin will tell me im freezing. I also find that if its just chilly i FREEZE instantly, to the point where i loose all feeling in my hands for atleast a half hour. Ive accidentally burned them many times with hot water because they will be numb and i wont be able to feel water temperature (though i can feel it with any other body part)

Ive started to notice more bruises occuring and also that my muscles have been tightening as well as constantly stiff and painful.

I have no idea if this means anything, but I have two different colored eyes. 1 brown and 1 green. I have ALWYAS been this way, and have also been fairly medium/pale complexion with freckles.
I have noticed that the past few months my green eye has been looking more brown and that my freckles aren't as visible (weather exposed to sunlight or not...)

Other information, that might be of some importance:

I am currently on ADHD medication: 20 mg's of Adderall XR
I HAVE had issues in the past with both anorexia and bulemia and WAS hospitalized until nessasary weight gain was established. This was many years ago and i do NOT struggle with these issues anymore.
There is no chance of pregnancy.
I smoke cigarettes, non-menthol, about a pack a day and have smoked for about 7 years now.
I AM sexually active but am not on birth controll (previous birth control methods caused me to hemmorage for 9 months straight, I had to take high doses of estrogen treatments to get the bleeding to stop)
I do NOT have any STD's or HIV/AIDS, I am checked often.
I do NOT use illegal drugs or abuse my medication
I DO have a history of drug abuse.
Specifically Cocaine, PCP and Speed.
I have not used illegal drugs in over 3 years.
I DO drink alcoholic beverages somewhat often, though I do not drink in excess.
My eating habbits are fairly normal, for a poor college student atleast.
I live in a big city so I walk a lot = healthy amount of exercise
I am allergic to Latex and Amoxil.
My mom has MS
heart disease has been common in our family
lung cancer as well.

I really appreciate any feedback anyone is willing to give.
I am open to all suggestions and all questions and have become desperate for an answer.
Im sick of suffering, and I can't give up yet! (I've already come SO far!)

Again, Thank you SO much for reading my post, I really do appreciate it more than you could imagine!

xo Jamie-Lynn

4 Responses
387767 tn?1345872027
Wow, that's a lot of symptoms.  Did they check your thyroid? Your heart?  Blood tests for autoimmune diseases like RA or lupus or even Lyme disease?

Have you ever had a brain MRI to rule out MS or a brain tumor?  It might be worth it to see a neurologist.  Some of the symptoms could be nerve-related.

You said you had cancer.   Did they check for this?

In the meantime, I would try to stop smoking.  It's not good for you, especially with all your health problems.
707136 tn?1229029245
Actually, Ive had my thyroid checked multiple times and there has been nothing wrong. My heart seems to be fine as well. The only thing they ever decided was wrong with my heart was mitralvalve prolapse? (spelling?) but apparently that isn't a problem.
Blood tests have been done for auto immune diseases, im not sure about RA though,  they check for lupus often, and Lyme disease was canceled out a long time ago.

I have never had an MRI though, or even had my brain checked. No ones ever asked me that, Ill deffinately have to mention it at my next appointment.

They have checked my cancer, I get cat scans every 6 months, but for some reason i really do think that maybe my cancer was just a symptom of whatever the bigger problem is.

Thank you SO much for your suggestions, i'm deffinately going to mention an MRI to my doctor.
387767 tn?1345872027
Let me know if you find out anything.  I hope you feel better.
Avatar universal
have you ever been seen by a geneticist? there is a syndrome called waardenberg syndrome also neurofibromatosis check it out
good luck!
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