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549614 tn?1315216713

Neck lumps 4-8cm 18 years Hurt badly! Help

These lumps developed in my neck over 18 years ago after a very serious medical problems (i died 2's). For many of the last 18 years I have seen Dr. after Dr. for these lumps and I was always told :nothing to worry about". The last couple of years they developed hard lumps in each side. They interfere with ROM of my head and neck. They swell so badly sometimes that i can barely breathe. Pills and foods get stuck in my throat for hours sometimes. I have even had my throat stretched to help this problem to no avail.
It is almost impossible to turn my head completely to one side or the other... I cant lift my arms above my head. I have sooooo many other problems going on as well. IBS, Irratable bladder, chronic fatigue, Fibro, Breast lump problems, Heart problems, diverticulosis of both the bowel and bladder, massive sikin cancer, foot/feet problems, joint and muscle pain, massive muscle spasams. I could go on and on.
How do I find a Dr. that is willing to do more than just manipulate them and tell me there is nothing to worry about!
When they first began they were rubbery and ached allot, now the last 2-3 years they developed this lumps inside.
The Dr's see me wince, flinch, pull away from the pain when they are examining them but, yet.... they dont LISTEN!
I have been called a mystery, and an ignigma so many times i hope I never hear that word again!
One Dr. did do a blood test which showed high levels in my liver. But then nothing was done!
I live in the states/Fl. does anyone know of a facility that might be interested in finding out what these are?
I lost my insurance in Jan 07 after carrying it for 20 years. It was either keep the insurance or save our home of 20 years. We chose our home.
Is there a test i can buy online that will give me some insigtht into these things. I have tried for 18 years to have these things taken care of and everyone keeps passing the buck! The buck stops here.
17 Responses
549614 tn?1315216713
I neglected to tell you that..... these are generally about 3-4cm daily.... they can swell to over 8cm! This is when I cant breathe and no amount of inhalers and/or breathing treatments help. There is no rhyme or reason to them.
549614 tn?1315216713
I hsve posts on  10 sites and about 30 different topics, for several years now. No Dr. has even had the curitisy to say a word! No one is saying anything! Why?
Becuase no one has said a word.... I guess I better kiss my a#@ goodby,  I guess. Because no one saying anything is just confirms my worse fears. I just wish someone (med pro) had a little guts and say something! Like... enjoy the time you have left... get off the puter and have some fun... SOMETHING!
549614 tn?1315216713
Obviously, due to lack of interest from the community… I will just list my problems everyday and have hope. I have to have some hope!
Last night my right ear was beginning to hurt. It extended down into the lump area. This morning…. It’s much worse. It does not feel like a typical earache. It feels like its generated from the lump.
IBS is bad today as well as the irritable bladder. I’ve only been up for about 2 hours and I have been to the bathroom at least 8 times already!

The only message I received from anyone (from all of my posted sites) is to look into my thyroid. I’d say that was sound advice. TY! You dont know how much it means to me to know that SOMEONE has read my story.
Avatar universal
I think it is very terrible that NO doctor has been able to help you with those lumps on  your neck. Surely somebody out there knows what this could be. Maybe try the Undiagnosed Symptoms forum on this website. There are many people on there that may be struggling with the same problems you are. I'm sure they may be able to help or at least give you some social support. I share in your frustration with doctors. My little brother has a genetic disorder that went undiagnosed for over 16 years. We went through many, many doctors until we found the ONE who would actually listen.
549614 tn?1315216713
Thanks so much for reading my story and blogs. It really means allot to know that at least all this stuff is being read about.
I am sorry about your brother and his long diagnosis. Was he in pain all those years? God I hope not! I am very glad to hear that you finally found some real help for him. It is always better to have a diagnosis to better equip yourself with knowledge! At least then you know what your dealing with. My son and husband drove me crazy for years.... I thought I'd go out of my mind with them! To make a long story short... They were diagnosed wtih ADD. 15 years later, we now have a system which makes it much easier to deal with.
Right now I dont know if I should be working on my "bucket list" or keep searching for help. I wrote to a friend on another medical site.. and I told her... All the years I have had these lumps I have spent may countless hours looking on t web and all the link led me to cancer sites/forums.
I told her.... that I will probably be on the net looking for help when the big one comes along! Wouldnt that be ironic!
I think that people like me turning to web and still not receiveing help would make a good human interest story! It is somthing I have been tossing around for a few weeks now. But, I dont know if I have the strength to carry it though.
Thanks for reading my story and giving me some input, it really does mean allot to me. you really have no idea.
You take care and I'll say prayers for you and your family.

554442 tn?1221238825
My really good friend recently has had the same exact problem she had a huge lump on the side of her neck,,she went to the doc and they like others didnt know what to say. I iwll talk to her tonight and find out if her blood tests came back and if she is still having the lumps.  Also have you ever seen the true story "movie" Mask with Cher,,my friend has a lesser form of that disease Ill ask her the name,,I started to think maybe this could be the cause if her lumps.  So I will get back to you as soon as I get this info.  Im so sorry you have to go through this,,what the heck is wrong with these doctors,,you cant just live like this.  Hang in there I will get back to you as soon as I talk to her :)
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