Aa
I can't live like this forever?
Hi--I posted this in the Lymphoma community, but since I don't actually know whether or not I have lymphoma and my symptoms are still undiagnosed, I wanted to post it here also, just in case. I hope that's okay.
The past 9 1/2 months have been a complete h3llride for me. This all started after a seemingly routine virus of some sort in may 2010 but has yet to come to an end!
I will try to keep this as brief as possible. I just want input from someone, anyone else, other than the military hospital doctors i've been seeing. I am convinced something is going on with my body, but nobody seems to have any answers for me. I keep getting referred to a different specialist for each individual complaint, but I feel like everything that has been happening is somehow related. I just can't seem to put the puzzle pieces together. I'll start from the beginning and add anything I can think of that is relevant.
I am now 21.
Began smoking at 16.
Had first child at 17 (quit while pregnant and resumed after birth). Healthy & full term.
Had an MRI in 08 that showed areas of non-specific white matter--said they could be from headaches, but very early stages of demylineating condition could not be ruled out.
Jan 09, had dx Laparoscopy for weird periods. Found cyst on rt ovary and scarring around sig. colon.
Found out I was pregnant 1 week after surgery. Difficult pregnancy, preterm labor bouts--had healthy full-term baby Sept. 09.
Moved 3,000 miles, husband deployed for 7 months, did pretty well considering!
Had Mirena inserted April 2010, and a very, very large scale tattoo piece in March.
THEN! IT ALL STARTED!
May 2010, husband returned. I became extremely ill--sore throat, rt tonsil was HUGE, fever, etc. Fever and sore throat resolved, but I don't feel like I have gotten better since then.
Early June 2010--lymph node right under ear swells & is very hard. Dr says we should look further if it doesnt go away in a month.
Whole host of symptoms nearly too long to list develop & come and go randomly from June-Present.
*Headaches--Stabbing pains not lasting very long.
*Acne
*Pelvic Pain
*Itching Skin
*Nausea, randomly
*Crazy mood swings
*Easily winded.. walking up the stairs takes my breath sometimes
*Tingling and vibrations all over body, randomly.. Like electric shock
*Muscle knots, spasms, pain
*Ice cold hands and feet (they often turn almost black especially in cold)
*Very, very slow healing time
*Lower abdominal swelling--thought it was a hernia, CT negative. Protrusion, disappeared on its own.
*Palpatations
*EXTREME fatigue.. bed and couch ridden most of the time
*Easily bruised
*Neck stiffness
*Strange feelings in throat
*Ears ringing
*Double vision
*Numbess
*Dizziness upon standing, to the point of blacking out
*Insomnia, restless
*Extreme Hair loss
*Horizontal lines on toenails
Just to name a few!! No pattern to symptoms
Hump appears over lumbar spine in June. Appears swollen, not muscular related. Xray normal. No known injury.
Had various tests, ultrasounds, CT scans, etc.
Early ultrasounds showed fluid around kidneys & liver. (March 2010 and August 2010)
They thought it was my gallbladder--had HIDA scan and it was only a few points off/modified diet as treatment.
Random and severe stomach pain in all quadrants, major attacks every few weeks. Bowels were fine, no problems could be found.
Ended up losing around 40lbs from may to August. Some was post-baby weight but it literally just fell off when I started feeling bad.
Overwhelming fatigue and malaise continued. Tested for thyroid problems & mono, negative.
Had Mirena removed to make sure it wasn't causing the problems in Sept.
Periods regular after removal.
Went to ENT Sept 2010 to investigate lymph nodes. CT scan showed a few nodes with the biggest being 1x1.5cm I believe. Said to follow up in 4 months if any change.
Several strange events between Sept-Oct 2010, numbness, fingers tingling, chest pain, visual disturbances, etc etc. Not anxiety related. Went to ER once but wasnt a stroke. Dr's baffled.
Pap came back questionable Nov 2010. Due for a colposcopy, have not had one yet.
Weird rash around Thanksgiving worth mentioning, appeared out of nowhere on my shoulder. Looked like ringworm even though we don't have any pets. Went away after about 4 days. Lyme disease came to mind (Live in Northwest) but I highly doubt it.
Strange appearance of new freckles in past 2 months. Appearing all over body and coming up in groups, almost like constellations. Most in straight lines ex: down my shin bone, in a patch on my stomach.
Little pin sized red spots that look like blood blisters.
Constantly itchy even with lotion.
Now, in the past 4 months, my lymph nodes have gone crazy. I can feel them all up and down both sides of my neck, one above my right collar bone, in my armpits and on both sides of my groin. Most feel firm especially original one under my ear. Plan to call ENT soon to see about biopsy.
My biggest fear is Lymphoma, but i am not even sure how likely of a possibility that is. Next biggest fear is MS.
I am sure there is more but gosh, this was already so long. If you made it all the way through--thank you so, so much. I will appreciate greatly ANY input, advice, ideas, what have you! And if you need any more info just ask, I will be closely monitoring this.
I feel like I am going insane and just want this to end. I want my life back.
The past 9 1/2 months have been a complete h3llride for me. This all started after a seemingly routine virus of some sort in may 2010 but has yet to come to an end!
I will try to keep this as brief as possible. I just want input from someone, anyone else, other than the military hospital doctors i've been seeing. I am convinced something is going on with my body, but nobody seems to have any answers for me. I keep getting referred to a different specialist for each individual complaint, but I feel like everything that has been happening is somehow related. I just can't seem to put the puzzle pieces together. I'll start from the beginning and add anything I can think of that is relevant.
I am now 21.
Began smoking at 16.
Had first child at 17 (quit while pregnant and resumed after birth). Healthy & full term.
Had an MRI in 08 that showed areas of non-specific white matter--said they could be from headaches, but very early stages of demylineating condition could not be ruled out.
Jan 09, had dx Laparoscopy for weird periods. Found cyst on rt ovary and scarring around sig. colon.
Found out I was pregnant 1 week after surgery. Difficult pregnancy, preterm labor bouts--had healthy full-term baby Sept. 09.
Moved 3,000 miles, husband deployed for 7 months, did pretty well considering!
Had Mirena inserted April 2010, and a very, very large scale tattoo piece in March.
THEN! IT ALL STARTED!
May 2010, husband returned. I became extremely ill--sore throat, rt tonsil was HUGE, fever, etc. Fever and sore throat resolved, but I don't feel like I have gotten better since then.
Early June 2010--lymph node right under ear swells & is very hard. Dr says we should look further if it doesnt go away in a month.
Whole host of symptoms nearly too long to list develop & come and go randomly from June-Present.
*Headaches--Stabbing pains not lasting very long.
*Acne
*Pelvic Pain
*Itching Skin
*Nausea, randomly
*Crazy mood swings
*Easily winded.. walking up the stairs takes my breath sometimes
*Tingling and vibrations all over body, randomly.. Like electric shock
*Muscle knots, spasms, pain
*Ice cold hands and feet (they often turn almost black especially in cold)
*Very, very slow healing time
*Lower abdominal swelling--thought it was a hernia, CT negative. Protrusion, disappeared on its own.
*Palpatations
*EXTREME fatigue.. bed and couch ridden most of the time
*Easily bruised
*Neck stiffness
*Strange feelings in throat
*Ears ringing
*Double vision
*Numbess
*Dizziness upon standing, to the point of blacking out
*Insomnia, restless
*Extreme Hair loss
*Horizontal lines on toenails
Just to name a few!! No pattern to symptoms
Hump appears over lumbar spine in June. Appears swollen, not muscular related. Xray normal. No known injury.
Had various tests, ultrasounds, CT scans, etc.
Early ultrasounds showed fluid around kidneys & liver. (March 2010 and August 2010)
They thought it was my gallbladder--had HIDA scan and it was only a few points off/modified diet as treatment.
Random and severe stomach pain in all quadrants, major attacks every few weeks. Bowels were fine, no problems could be found.
Ended up losing around 40lbs from may to August. Some was post-baby weight but it literally just fell off when I started feeling bad.
Overwhelming fatigue and malaise continued. Tested for thyroid problems & mono, negative.
Had Mirena removed to make sure it wasn't causing the problems in Sept.
Periods regular after removal.
Went to ENT Sept 2010 to investigate lymph nodes. CT scan showed a few nodes with the biggest being 1x1.5cm I believe. Said to follow up in 4 months if any change.
Several strange events between Sept-Oct 2010, numbness, fingers tingling, chest pain, visual disturbances, etc etc. Not anxiety related. Went to ER once but wasnt a stroke. Dr's baffled.
Pap came back questionable Nov 2010. Due for a colposcopy, have not had one yet.
Weird rash around Thanksgiving worth mentioning, appeared out of nowhere on my shoulder. Looked like ringworm even though we don't have any pets. Went away after about 4 days. Lyme disease came to mind (Live in Northwest) but I highly doubt it.
Strange appearance of new freckles in past 2 months. Appearing all over body and coming up in groups, almost like constellations. Most in straight lines ex: down my shin bone, in a patch on my stomach.
Little pin sized red spots that look like blood blisters.
Constantly itchy even with lotion.
Now, in the past 4 months, my lymph nodes have gone crazy. I can feel them all up and down both sides of my neck, one above my right collar bone, in my armpits and on both sides of my groin. Most feel firm especially original one under my ear. Plan to call ENT soon to see about biopsy.
My biggest fear is Lymphoma, but i am not even sure how likely of a possibility that is. Next biggest fear is MS.
I am sure there is more but gosh, this was already so long. If you made it all the way through--thank you so, so much. I will appreciate greatly ANY input, advice, ideas, what have you! And if you need any more info just ask, I will be closely monitoring this.
I feel like I am going insane and just want this to end. I want my life back.
It's usually lung tissue, but it may be elsewhere depending on your symptoms (I believe!)
Well, they of course have to have certain vaccines and whatnot, but he wasn't exposed to anything that I know of that could have caused this to happen to me. I figure it he would have been, he would be experiencing some sort of signs or symptoms as well.
Thank you for your reply! I definitely considered a vitamin deficiency. I don't know if it does much good but I started taking a multi-vitamin every day a few months ago. I try to eat super healthy and include lots of fruits and veggies because I have a toddler whom I only feed fresh fruits, veggies, meats & whole grains. So I would hope that I am getting enough vitamins in, but I guess one could not be too sure. I know there could be problems with how my body is absorbing vitamins? Idk..
But thank you for the insight.. that's the exact reason I posted this question. I don't know why they never tested my blood for those things before. It seems like it'd be routine--but with them, you have to do your own research and tell THEM what to look for!!
& The sarcoidosis.. what exactly do they biopsy?
But thank you for the insight.. that's the exact reason I posted this question. I don't know why they never tested my blood for those things before. It seems like it'd be routine--but with them, you have to do your own research and tell THEM what to look for!!
& The sarcoidosis.. what exactly do they biopsy?
That's a huge list of symptoms! Good for you for keeping track of them.
Organize them, please? make a chart or calendar so that it's easy to reference. Make note of what makes your symptoms better or worse. Keep track of your diet and if it affects your symptoms.
For example: Breakfast = 3/4s cup Special K, 1/2 fat free milk, 6oz Orange Juice w/ Calcium, 1 medium banana...... 30 minutes later instance of nonformed grainy feces. Greenish in color. Non-radiating stomach cramps in lower left quadrant
You are already going tot he doctors and following up. It's important to keep doing it until you have a diagnosis. The HARDEST part is figuring out what is causing the issues. It could very well be that you have more than one thing causing different symptoms....
The cold hands and feet that turn colors in cold, is most likely Raynaud's Syndrome (http://en.wikipedia.org/wiki/Raynaud's_phenomenon). It's annoying, and it can come and go.
Many of your symptoms can be related to vitamin deficiancies too. Have your blood serums checked. I'd also suggest getting your Thyroid and Parathyroid retested. I'd also suggest they do a biopsy and look for Sarcoidosis. That's the ONLY thing I can think of that links nearly all of your symptoms. (https://health.google.com/health/ref/Sarcoidosis) But I am definitely guessing - I'm not a doctor, only a student nurse.
Good luck! KEEP US POSTED!
Organize them, please? make a chart or calendar so that it's easy to reference. Make note of what makes your symptoms better or worse. Keep track of your diet and if it affects your symptoms.
For example: Breakfast = 3/4s cup Special K, 1/2 fat free milk, 6oz Orange Juice w/ Calcium, 1 medium banana...... 30 minutes later instance of nonformed grainy feces. Greenish in color. Non-radiating stomach cramps in lower left quadrant
You are already going tot he doctors and following up. It's important to keep doing it until you have a diagnosis. The HARDEST part is figuring out what is causing the issues. It could very well be that you have more than one thing causing different symptoms....
The cold hands and feet that turn colors in cold, is most likely Raynaud's Syndrome (http://en.wikipedia.org/wiki/Raynaud's_phenomenon). It's annoying, and it can come and go.
Many of your symptoms can be related to vitamin deficiancies too. Have your blood serums checked. I'd also suggest getting your Thyroid and Parathyroid retested. I'd also suggest they do a biopsy and look for Sarcoidosis. That's the ONLY thing I can think of that links nearly all of your symptoms. (https://health.google.com/health/ref/Sarcoidosis) But I am definitely guessing - I'm not a doctor, only a student nurse.
Good luck! KEEP US POSTED!
Was ur husband exposed to any harmful agents while deployed that he could have brought back to u? This was the first thing that came to my mind when reading ur story. I'm sorry ur struggling so, hope u find some answers and fast!!
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