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Old 11-25-2009, 11:39 AM   #1
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destiny dawn HB Userdestiny dawn HB User
Exclamation people suffering without a diagnosis

there seems to be allot of us. and our posts are always very long as we try to muster up all information that might help us find resolve. i have learned since joining these boards that long posts don't round up many responses.

I am on a journey to cure what ails me right now. on monday, i might get a final diagnosis and i want to share how that came to be for me.

even if i don't get any responses, i will be able to reflect on my own story and share it with readers who might be able to draw some conclusions of their own from my experience.


for me it started a year ago. I'm a perfectly healthy, resilient 23 year old mother with a few bad habits (smoking cigarettes and, occasionally, marijuana). I have always been a good eater when it comes to choosing food but have never had much of an appetite. my average weight between my three pregnancies has been about 115. i've always had perfect blood pressure. i have asthma that only comes on when i have the flu and i have often ended up in hospital needing a ventilator, and on some occasions, having pneumonia.

a year ago, while on a long trip, i had my first panic attack. i was very tired, my hands and legs began tingling, my heart started beating harder and faster, I started feeling dizzy, my breathing became rushed and shallow, and just as I got into the hospital, i blacked out. didn't faint, per se, but my vision darkened and I collapsed. i was given an ativan and sent on my way.

a follow-up with my doctor a week later went as follows:
i told him about the episode and how my chest had been aching since as well as muscle pain i had been feeling in my back. he checked for nerve problems and then told me it was all part of the anxiety.

anyone who has begun a journey with anxiety knows that once it starts, it's hard to shake or ignore your symptoms. and i had many symptoms.

for the following four months or so, i saw several doctors on several occasions for symptoms including chest pain, tingling, headaches, stomach cramps, heart palpitations, feelings of going crazy or losing control, itching, dizzyness, enlarged nodes (one behind my ear, one in my neck), two pea-sized lumps in my vagina, sensations like water pouring down my head and back... you name it. my doctors would prescribe me muscle relaxers for neck/back pain, antidepressants for depression, ativan for anxiety..all which i never took. when I did eventually get blood tests, they were normal, although my blood pressure had lowered to about 90/60 and stayed low since about this time.

about five or six months after my first anxiety attack, i went for my regular PAP. got a call a few weeks later which began my journey with CIN3 and carcinoma in situ. for those who haven't heard, this means i had cancerous cells on my cervix and i had to have a surgical procedure to remove the top portion of my cervix to prevent the cancerous cells from spreading. the procedure is called a LEEP (loop electrical excision procedure)
the results of the leep were "unclear margins", meaning that when they examined the removed tissue, they discovered that they had left remaining cancerous cells in my cervix. they didn't get enough out. i was told to come back 6 months later for a follow-up PAP to see whether I needed another LEEP.

In the meantime, I had been noticing this strange little lump in my groin/upper thigh. it was getting bigger. my doc had examined it a month before and told me it was a NORMAL inguinal lymph node. but i got an infection from the surgery and the node started getting bigger, even after taking antibiotics.

since the time of the abnormal PAP i had gotten used to the fluttering heart sensations, chest pain and muscle aches. i didn't get all nervous and worried after my heart thudded or when my back and chest ached. i just dealt with it.

so, around 2 months ago, i asked about this lump again. the doc wrote out an order for an ultrasound. I waited another month.
about 2 weeks after the ultrasound, on a saterday, my doctor phoned me to tell me to come in that sunday early in the morning and meet him in the emergency department. he told me that the lump was actually a hardened, enlarged lymph node which had adhered to surrounding tissue. surgery was scheduled for 3 weeks after to remove that one node. this was about one months ago from today.

a week before surgery, i decided that i wanted a second opinion. i traveled to the nearest biggest city and spoke with a doctor about my concerns. she tested my blood, my liver, my heart, and my lungs. all were good and clear. then she gave me a pelvic exam.
the pelvic exam revealed bleeding vaginal lesions and an irritated cervix. she said it looked like Pelvic Inflammatory Disease. i agreed when she asked whether intercourse was painful. she prescribed me a 2-week course of antibiotics to clear up whatever infection/std/bacteria/fungus which was causing my symptoms. back home i went, prepared for my surgery and relieved about tests which were clear.

so here i am today. that surgery was done last thursday. i'm healing well but i have numbness and burning pain in the upper part of the leg where the lymph node was removed. it extends all the way down to my knee, even though the incision was only three cm in my groin.

i went to the doctor yesterday about the numbness. he referred to the surgery report and explained that the surgeon actually had to remove several nodes. the hardest one (the famous lump) was actually beneath my thigh muscle, near the main artery of my leg. the doctor explained how the procedure had complications, such as bleeding and needing to get under that muscle. hence, the nerve damage. it may or may not go away.

in five days i will see the doctor about the biopsy results on those nodes.
my anxiety-ridden mind just knows i have cancer. but, as my friend said, "think thoughts that make you happy, and never mind reality"
easier to say than it is to do, but it does help.
in any case, i'm hoping with every cell in my body that this is only a very close call and i'll look back on this all as a minor blip in the story of my life. but it has been one hell of a year for me.

the anxiety is chronic now, in that the symptoms persist whether or not they worry me. i've learned to just get used to them.

I HOPE that after this appointment, i'll still expect to live a full life. i'll be able to accept this diagnosis and move on, ridding myself of every ounce of anxiety that has cursed me this last year, and continuing the life i was leading before that first anxiety attack i had a year ago.

If you have a long story to tell, I want to read it. If my health anxiety has done anything for me, it has allowed me to understand many symptoms of anxiety and explain them away. I also have believed and researched so many potential ailments linking my symptoms to a diagnosis that my doctor has joked in my appointments that he and I should switch seats.


To everyone suffering from unexplainable/complicated symptoms, you are not alone and I want to hear your story.


i will write again next week.
much love,
-destiny


ps- if you have had similar pelvic problems, lymph node problems, or anxiety problems that have been resolved, please share your story!!

 
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Old 11-25-2009, 11:05 PM   #2
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Benit HB User
Re: people suffering without a diagnosis

What about the enlarged nodes in your neck and behind your ear? Was any concern expressed about those?

I'm 28/male and I've had a lump in the upper-left side of my neck for a few years now, not noticeable to the eye AFAIK, but it can be felt if pressed. It is a nuisance, and I wonder if it plays a role in some strange neck/head sensations I've had for years, now.

About 1.5 years ago I found a slightly enlarged area in my right breast, not exactly a lump as such, but if you press the area it feels somewhat raised. Obviously I have thought about the cancer possibility, but after researching how incredibly rare breast cancer is in men younger than 50 years old, I decided it was not worth worrying over. Not to mention, there are some weeks where it seems as if the "lump" has gone down in size.

I've not brought these concerns up with a doctor, even though I probably should. The reason being it's conceivable that he might want me to get some tests done, and I don't have health insurance.

What do you think? (Oh, and please don't try to worry me, as I'm very anxiety prone.)

 
Old 11-26-2009, 08:17 AM   #3
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destiny dawn HB Userdestiny dawn HB User
Arrow Re: people suffering without a diagnosis

Benit,

i haven't mentioned the one behind my ear since it first appeared and was rather small. at that time the doc said not to worry. the one lump in my neck (same place as the one you described) has been enlarged for about 6-7 months. the doc looked at it when it was new and said there was nothing to worry about. he also looked at it just last week after the decision to biopsy the femoral node. he said that even though it is quite large, it remains soft and very palpable. probably a long-term reaction to a cavity, pimples, or even dandruff. so rest easy, i won't scare you.
the node that had them concerned (which was just a regular invisible node before) was about the size of a golfball and refused to budge even if i tried very hard to separate it from tissues around it. it also felt as hard as a golf ball.
every symptom you can come up with has the potential to be life-threatening, and if we all went running to the hills at each of these symptoms then we'd all suffer from elevation illnesses haha.
i would not worry much about the elevated area in your breast. if you have undergone much stress, you can blame your hormones for the fluctuating size. men have milk ducts, so to speak, in their breasts too and often during times of stress (or anxiety) they will become more noticable due to hormonal and chemical disturbances in the body.
i'm pretty sure this goes as far as the strange head/neck sensations, too. our lymph system actually becomes over-worked from anxiety altering our bio-feedback loops (signals from our minds to our body and back) and we can start having random signals from the body for no reason while the immune system tries to regain homeostasis (regulation). in any case, as with anything, i'd casually mention it the next time you are in the docs office for whatever reason. i'm sure you've heard or read this before but don't mess with it. if the size reduces most when you mess with it the least, then you are in a pretty safe zone.

thanks so much for the reply
take good care! <3
-destiny

 
Old 11-26-2009, 10:28 PM   #4
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Re: people suffering without a diagnosis

Quote:
Originally Posted by destiny dawn View Post
...
he said that even though it is quite large, it remains soft and very palpable. probably a long-term reaction to a cavity, pimples, or even dandruff. so rest easy, i won't scare you.
Destiny,

thanks a lot for your response. But I'm just curious as to why any of the above three things would cause an enlarged area (lymph node I presume?) in the neck...?

Also, you said at the end of your reply, "don't mess with it." I'm not sure exactly what you meant by this?

thanks,
Benit

 
Old 11-27-2009, 09:23 AM   #5
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destiny dawn HB Userdestiny dawn HB User
Re: people suffering without a diagnosis

i meant your swollen areas. if you messing with them coincides with their change in size, then you're probably ok. in other words, stop messing with them and see if that's when they reduce in size.

lymph nodes are the filtering system of infections, bacteria,etc.
as a general rule, if you're trying to figure out which lymph nodes help maintain which parts of the body, then remember lymph generally travels towards the heart. so anything going on around your head will result in over-working lymph nodes around your head and neck...anything injury/infection on your leg would result in enlarged nodes in the groin...

as an example, if you stubbed your big toe and it scabbed, your lymphatic system would produce more white blood cells which would gather bacteria and dead cells and bring them back to the nearest nodes, where the cells would be eliminated. the more infection/repair needing doing, the heavier the work load for the lymph nodes in that area.

So, naturally, if you had terrible acne, and a bad cavity, and a dry flaky scalp, then the nodes around those areas would be experiencing a heavier than normal workload, trying to collect and dispose of the dead skin cells, bacteria, etc. they'd be larger because they'd be processing more radicals at any given time.
i hope that made sense. i'm not a doctor! but i have read up on this and what i wrote here is my general understanding which i believe to be fairly accurate.
feel free, anyone, to correct me if i am wrong about any of this.

-destiny

Last edited by destiny dawn; 11-27-2009 at 06:56 PM.

 
Old 11-27-2009, 08:29 PM   #6
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Re: people suffering without a diagnosis

Quote:
Originally Posted by destiny dawn View Post
i meant your swollen areas. if you messing with them coincides with their change in size, then you're probably ok. in other words, stop messing with them and see if that's when they reduce in size.

lymph nodes are the filtering system of infections, bacteria,etc.
as a general rule, if you're trying to figure out which lymph nodes help maintain which parts of the body, then remember lymph generally travels towards the heart. so anything going on around your head will result in over-working lymph nodes around your head and neck...anything injury/infection on your leg would result in enlarged nodes in the groin...

as an example, if you stubbed your big toe and it scabbed, your lymphatic system would produce more white blood cells which would gather bacteria and dead cells and bring them back to the nearest nodes, where the cells would be eliminated. the more infection/repair needing doing, the heavier the work load for the lymph nodes in that area.

So, naturally, if you had terrible acne, and a bad cavity, and a dry flaky scalp, then the nodes around those areas would be experiencing a heavier than normal workload, trying to collect and dispose of the dead skin cells, bacteria, etc. they'd be larger because they'd be processing more radicals at any given time.
i hope that made sense. i'm not a doctor! but i have read up on this and what i wrote here is my general understanding which i believe to be fairly accurate.
feel free, anyone, to correct me if i am wrong about any of this.

-destiny
But then I have had this lump in the upper left back of my neck for 3 years or more. I'm 28 years old now, young enough that my body should be able to heal quickly. I know you're not a doctor, but shouldn't the problem have cleared up by now, and the node go back to normal size? Just curious to see if you have any thoughts on this point.

 
Old 11-28-2009, 10:52 AM   #7
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Re: people suffering without a diagnosis

i can't say why it's been enlarged for so long. i would say, though, that you should tell your doctor it all started with one node and then you started noticing other lumps and you are concerned that they are all related. a chest x-ray would probably confirm or deny your suspicions.. i do know that lymph nodes can swell up from a single cause and remain swollen for many years after. can you recall ever having had a dermal infection or using creams that caused a reaction? a case of mono can cause permanent enlarged nodes in the neck as well... i also have heard that permanent swollen nodes are more common in men due to the fact that they shave their faces regularly. any disturbance to natures intentions can cause the nodes to act up in the first place, and often times they remain enlarged thereafter.

i think if i were your i'd ask for a chest x-ray, blood work including an ebstein-barr test and mono test (they might even be the same test, not too sure), and a recommendation as to whether antibiotics might help. there are a whole kamut of long-term bacterial and viral illness that can sneak around undetected in your body for years. most of them aren't very serious and generally only cause minor symptoms.
if you are also feeling fatigued and have any constant or periodic shortness of breath or chest sensations, then i'd make an appointment. otherwise i'd say that waiting wouldn't be unreasonable. a friend of mine had the flu and lumps for a year before he decided to see a doc. turned out he was in the late stages of hodgkins disease and he still was cured of it in 8 months.
but honestly as someone hearing your symptoms, i think that you're one of those people like myself who has so many symptoms that they can't possibly be ALL related to a single cause.
maybe the lump in the chest is due to stress-related hormones and the lump in your neck is a permanently enlarged node in response to a previous infection...
i'd say that it's too complex for us to make a definite judgement. you should at least call a nurses' helpline and ask questions. they will spend hours on the phone with you and answer any and every question you have. they go through a database with facts about every symptom. i'm in canada so i don't know whether you have a similar phone number to call where you are. you could always just call or visit your doc for an opinion. if you really want, i can find out the 1 800 number for the nurses line here in canada but they take your phone number and im not sure if they'd accept your call from another country??? which lump appeared first? how long after did you notice another lump? are you unsure if they/some of them are even nodes?

 
Old 11-30-2009, 08:09 AM   #8
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Re: shortness of breath with no other symptoms

Hi I'm new here and looking for some advice. The last few months I've experience shortness of breath that comes out of no where. It only lasts about a minute but Its scary never the less. Theres no pain involved just a quick moment of feeling like i'm suffocating. And most of the time it happens when I'm doing absolutely nothing so i know its not from excertion. I've been to the doctors once and they've done and ekg which came back normal and that was it. It doesnt happen everyday only about 4 times a month so I dont have a clue to whats going on.

Also on another note does anyone know how to start a new post, I cant figure it out thats why I posted this as a reply to a thread. Thanks for your time

 
Old 11-30-2009, 08:55 AM   #9
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Re: people suffering without a diagnosis

janelle,
i have had a similar experience. i don't have an answer for you but i have had this happen several times over the last year and it has slowly stopped happening. i think the last time it happened was about 2 months ago. the first few months i was having shortness of breath, it was coming almost every day. i stopped worrying about it after i became used to it and eventually it just happened less and less. i honestly believe this is another anxiety-related illness. it sounds to me like you are in a state of stress which causes you to breath more shallow during the day without you realizing it. your body is probably having moments of catching up where it decides you need to take in more air. i also took up breathing exercises, since i know that improper breathing can lead to low oxygen saturation which is the perfect environment for cancer and other illnesses to thrive.
imagine a square. as you visualize one corner of the square, begin inhaling, counting to four, and imagining your gaze going across the top side of the square. at the next corner, exhale slowly while counting to six and imagining your gaze reaching the bottom corner of the square. now inhale again while counting to 4 and gazing along the bottom edge of the square.
imagining the square helps you to see a start and end point to each breath as it cycles, and the counting helps you to retain a relative image with two identical inhales and exhales. just spend a few minutes each day doing this and make a point to breathe more effectively throughout your day.
i wouldn't consider periodic shortness of breathe to be an indicator of anything. unless it's constant and getting worse over time with pain or other symptoms, rest easy and don't get to overwhelmed by the sensation. don't wait for it to happen or try to prepare for it, but if it does happen, then lay down, put one hand on your stomach, and one on your chest, and feel the air going in and out as you practice the breathing exercise.
best of luck.
take care
-destiny

ps. i think you have to select a health issues category first, and then there should be a blue "start a thread" button up near the top left of the page. if that's not right, it might say "post a question" near the same area of the page???

Last edited by destiny dawn; 11-30-2009 at 09:07 AM.

 
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