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.
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.
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!
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.
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.
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.
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 :)
Hi and thanks for reading my story. Yes, I have seen Mask, Cher's movie. I dont have the problem that poor young man has.
These lumps began after a traumatic medical problem... which is one of the trade marks for swollen lymph nodes. However; the last few years they have changed dramaticalyy. Which is another trade mark for Hodgkins and non Hodg.
Dry skin, hair, nose, ears, eyes, enlarged liver and spleen are also symptoms as well as Fibro, which I also have been diagnosed with.
I would very much like to hear about what your friend has been through and what Dr.'s have done to help her.
Thanks for your input... you dont know how much this means to me. And I look forward to seeing your next blog.
Has your doctor ever mentioned Lipoma or Adiposis dolorosa (dercums disease) your symptoms sound real familiar to both of these conditions especially the Dercums in which Lipoma also is present,,Its worth a mention to your doctor. Ill give you a few links to web-sites that show picks and give good info
the link below is a good one with a pic of a man who has a lipoma on his neck
WOW! what a site! How come I have not found this before! My lumps are not near as big as some of those are! OMG! Thanks for sending links. It is just astounding!
You asked me if my Dr. ever mentioned Lipoma or.... No, he didn't, in fact I couldn't get him to even acknoledge that they are in my neck! Even though you can see them as plain as day! I had requested to see an oncologist(?) but, he refused to provide me the referral. He was very controlling. At the time my insurance Co. required a referral to see such specialists.
If, I only had swollen lymp nodes I could live with it. However; the change in them has sparked fears over the last 4 years... along with the pain that also radiates from them. Everything I have read... states.... if they change (which they have), then they are to be of concern. And, I also have an enlarged liver and spleen to boot. Whcih plays into this as well. And has also been ignored.
Last night my right side lump went up to 4"1/2"long That's equil too - 11cm. Not as big as some on that site you showed me. But, very painful.
As far as mentioning it too the Dr.... I no longetr have insurance for the first time in 20 years. we had to make a choice between keeping our home of 23 years or dropping our insurance. We choose our home. I was not getting anywhere with the medical community and kinda gave up.
You know what ironic? My old PCP (office girl) called my home yesterday morn and asked why I had not been in since June of 07? lol, it took a year for my PCP to realize I had not been in! And I use to be there every month! She inquired if I had another Dr. To which I replied NO, and then she said OKAY and hung up! Really weird.
Thanks for all your web surfing but, you might as well stop. There is not much out there that I havent read about in 18 years... now I need to get a diagnosis... some how.
Thanks sooo much for your friendship! Its pretty lonely being ill and by yourself most of the time and feeling helpless. Chatting to you helps allot. I do appreciate it very much.
Well maybe the next step will be too find a low income doc or church who will pay for all your healthcare,,I can help you with that as well. Im pretty sure by the sound of it it quit possibly could be lipoma. I am a nurse and know a lot when it comes to meds and diseases and such. please let me help you,,,I am going camping this weekend although im feeling horrible. But on Monday I will see about getting you into a doc or some kind of program. Dont give up,,you cant live like this and there is something thst can help you in some way or another. Take care for tonight and rest over the weekend.
I am sooooo grateful for your medical knowledge! I wish I knew some of the stories behind some of those lumps on the other site are. I'd be interested in finding out how long the node took to swell to those enormous sizes. Just out of curiosity.
I heard back from the lady that emailed me (my messages) yesterday… I am debating if I should post it or not. She claims to be a therapist and claims to have offered help in her first message. Or just let her go by the wayside. I do have to admit… she got my dander up! I haven’t felt my blood circulate this fast in a long time! Lol…
I was thinking about her message and my reply last night, and thought… I should apologize this morning… but, you know what? I’m not apologizing anymore! I was raised to apologize for everything in life even when I was right! And I won’t do that anymore!
This is not the first time I have “gone off” on someone lately (mostly my family) . And I have apologized for my bad actions of course blaming my eternal pain. But, this time…. I am not going to apologize!
For the therapist she claims to be…. She needs additional training in tactfulness! Why would I choose someone like her to help me? Even for free! She has the same mentality that many Dr.’s have…. Form an opinion (label them) before thoroughly looking into said problems! It’s the same story I hear from lots of folks and have experienced more times than I care to count.
Now on a more positive note…. Most of the help I have received and/or information provided to me has been from nurses on the sly…. Like the nurse when I was rushed to the hospital for sudden loss of potassium… she acted like she knew why my tongue is always swollen and sore and informed me to keep taking potassium… the ER Dr. brushed me off and sent me home.
Then the time before that was when I had my last internal…. And the nurse and PA (female) both looked at each other and cited in unison…. The cervix! I thought they had something! It sounded correct… yet, when the Dr. came in …. It was swept under the carpet and ignored.
I also want to state that through the years not all of my Dr.’s have been idiots. The Dr. in Phila who preformed my reconstructive knee surgery was FAB! Almost 35 years later and its all still intact!
The Dr. that diagnosed my IBS and had my gall bladder removed was great as well (even though my gallbladder did not need to be removed.. at least he tried)
An the female Dr. I went to for almost 8 years when I first came to Fl. She was really great for a long period of time! And truly did try to find some reasons for some of my problems to no avail (I was just starting to have problems back then so, the reason she was not able to get a diagnosis is because everything was soo vague at the time…. And things were just starting up! But, she became complaisant on allot of things around the 6/7 year, so it was time to find another Dr. End of story. Even my Dr. I had before this last controlling one was good. She tried as well but we were always sent off course due to chronic pneumonia, bronchitis, etc. So, allot of times things had to go by the wayside to keep me from dying. That’s understandable. I believe, had she stayed in the area… she would have kept trying and wouldn’t have given up. Unfortunately she had to give up her practice here and move out of state because her office manger was pilfering funds and taking out loans on the Dr.’s credit (in her own name) for thousands of $$$’s. The office manage/nurse is now in jail. It happens and it's no reflection on the Dr's abilities.
This last Dr. was horrendous! After I stopped going to him last year, I looked him up on the web. I found a really old page of his, and it cites how much HOLISTIC healing can help, etc. etc. I remember him asking me about Holistic healing when I first met him, but I just chalked it up to him wanting to find out what his patients views are on healing. I didn't think another thing of it until I found that page. He should have told me he believes in holistic healing more than traditional med! Now, I can understand why he said and did some things and why he didn’t do other things. He should have been up front with me! But, instead he made every visit a crying and begging visit…..He didn’t even listen to my lungs after I lost my insurance and paid out of pocket to see him for the next several months.
My husband went with me on my last visit to him to see for himself that the Dr. had not been listening to my chest & checking my lungs and heart. It is hard to understand that Dr’s will and have done this! On our way out to the car… my husband said…. He (the Dr.) didn’t touch you in any manor! Nothing! With that I replied…. Welcome to my world.
It took me about 8 weeks to wean myself off of all my 14 meds but, I did it and haven’t taken anything but OTC and herbal supplements since. I live on ALEVE though, that is my source for helping the pain. From 14 meds down to 4 OTC.
My brother, who has been going through allot of the same complaints both my sis and I share…. Started taking Cod Liver Oil. He really put allot of stock in it! When he and I were at the airport last time, I couldn’t keep up with him! It was just amazing! He informed me that his joint and muscles feel 100 times better! Now, let me tell you… my bother does not put allot of stock in anything or anyone but himself. So, when he informed of his recovery I was indeed interested.
I took it for several months. Though I did not have the same fab reaction to it that he had described I was seeing improvement in other area’s such as my hair. It was growing back in! It was shiny again! It was not falling out as much! I have fingernails again! My dry, cracked brittle nails where now long and harder than they ever have been (better than taking gelatin)! It also aided in the IBS! I slowed down to only 3-4 times a day and then it went the complete opposite direction and I was severely constipated. And it helped the severe dryness in my ears. My hernia was killing me all the time as well. I had to stop taking it.
Now, my hair is listless, and falling out again in a dramatic rate… my nails look aweful… and the severe IBS is back in full swing.
Our grandparents really had something there! If a study has not yet been accomplished… it may behoove someone or an institution to accomplish one!
Last night a friend of my husband’s stopped by. I had never met him before and found him to be extremely interesting and intelligent! At first we were chatting about all our ailments (he is living with bad knee pain/3 surgeries) and then we went on to some of the employment positions we use to hold in the past for laughs. However; during this conversation he asked me questions that should have been looked at a long time ago by my Dr.’s and never were!
He asked me how I cleaned up after a day of painting striping on the roads. I cited we use to use a product called touylene(?) and leaded gas. He asked if I used the glass beading on the paint for nighttime reflection. I cited, yes I did and showed him how it was applied.
After we were done chatting (I was getting really tired) he informed me that some of my problems could be linked to these products I have used in the past and suggested I get a heavy metal blood test done.
cont on next blog...
Cont from prior blog....
I also cited that besides living near an asbestos factory in my early years we use to take trips over to Allen Wood Steel Co. and watch them working! If the wind was blowing right… you could feel the heat of your face from the huge cauldrons of molten metal.
My dad would tell us about the use of steel for the army (when he was enlisted) and he would stand there so proud! It was really something to see and hear. But, 30 years later… god only knows what’s been introduced to my body.
As much as I would like to blame the steel co. alas… I cannot.
Anyway…. Back to this guy… as I cited, he was extremely informative and has given me yet another avenue to explore. One that I have only mildly perused, prior to now.
I doubt that all these things play into my problems, maybe none of them do! But, it is an avenue that needs to be explored.
You know… I’m not sooo worried about my lungs as I am these lumps and the enlarged liver and spleen and the yellow spots I get on my face and hands.
I’ve had lung problems since I was born, I know what the ending results are so I don’t need to be focused on that. But, at the same time I don’t appreciate that my last Dr. rarely addressed these ongoing problems for which I would have to beg for some inhalers, etc.
I went without for a long time because I just couldn’t listen to him pitch a fit (when I would ask for a script or perhaps a free sample) anymore!
This ninny also informed me that because I have not had pneumonia/been ill with a cold or flu – in a while, he thought I should stop getting the Vaccines! I was flabbergasted by this statement! It’s because of the shots every year that I have not been overwhelming ill for the entire winter! I informed him …. The year I did not get the shot I ended up in the hosp with phenomena! I was not willing to take that chance again. He cited… suit yourself but, it adds toxins to your body! You need to build up a resistance I was informed!
If I had any resistance… it was killed long time ago from consuming mass amounts of antibiotics over my lifetime. Thrush and I are old friends.
Well, time to go. I’m pretty tired, once again (was up half the night).I’ll be back in the morning definitely.
Fibromoma… thanks so much for your positive-ness (lol), it is giving me strength I thought had waned.
You have a great weekend camping (I don’t like to camp – the only way I will go is in a Winnebago -lol) . Though I do love communing with nature, I don’t like sleeping on the ground! For many reasons –lol.
Take care and be safe! Remember to hang your food in the trees to keep it from the bears! (I use to have a 63 acre farm)
I look forward to hearing about your adventure! Sit back and enjoy it if you can. I know the pains of Fibro … my prayers are with you.
FibroMoma... I am reading about Adiposis dolorosa... the site you provided. I am dumbfounded! Soooo many of the symptoms I have are listed here! The unexplained and sudden weight gain, the pain in the lumps as well as manulilation of said lumps. OMG I keep reading.....
Its me! Its all me!!! So many things I've noticed and tried to remember as symptoms... but you live with things for so long... they just become a part of you and you no longer look at them as much! OMG. OMG.
Going back to the site I am reading "other common symptoms" now......
OMG!!!! memory loss..... I offered to help my friend docuemt some antuqes (because I am familar with them) and now.... I cant.... I just cant... I've been feeling so guilty! Do you know how many times I have asked myself..... why cant you get this done????!
And my friend is getting upset with me... she does not kow whats been going on.... and looks at me with disbelief that i cant do this! OMG! I'm not nuts! I have doubted myself sooo much!
And typing..... I get my letters backwards now and have been using WORD to type in because it lessons the mistakes (silly one). But, my fingers just dont work the right way either! I am constantly dropping stuff! It makes me mad because I now have to bend over and pick it up with my bad back! I get sooo mad! Anyway...
Going back to site and read some more......
Tenderness under the feet.... I dont go anywhere with out comfy shoes. I cannot walk around without even soft slippers... I will be in pain if I do. I get teased and not believed when I wont even step out the door without something on my feet.
Allergy attacks--- I was tested about 10-12 years ago for allergies. Only mild reaction to pollens. However; I constantly sneeze! no, let me re-type that... I sneeze a few times a day... but, 6-10 sneezes in a row! And I'm a loud sneezer -lol.
Going back to the site......
OMG that last paragraph has it all.... omg...
Causes.... could be in the line of the mother daughter, grandmother....
Same as my... grandmother, mother, sis, & brother! He has aches all over as well!
Diagnoses..... patients are treated poorly..... yepper you got that right!
New Research..... Karen Herbst ...... I'd bet she'd have fun with me!
It answers soooo many questions! OMG!
I just have to sit here a bit and digest this..... this is just unreal..
could this also be why I've been calling things by the wrong name (especially when I know the correct name!)? Like calling the TV a tub, the couch a thermos... etc. ? I am immediatly mortified when this happens... of course everyone just thinks I'm being a ditzy blonde! It's upsetting.
Im sooo glad to hear that there may be a possible diagnosis found. Your symptoms sounded a lot like Adiposis thats why I wanted to bring up the link. I got a hold of a health care org in your area today but am due a return phone call. Im still working on getting you the med help you need. I will continue to work on this tomorrow. Im glad you are feeling some ease at a possible diagnosis. This makes me feel wonderful for you YA. Take care for the night and I will get back to you sometime tomorrow. Goodnight :)
Since i was on here yesterday, I had time to think about the Adiposis.
The more I had time to think ... the more I could digest what was provided. There are sooo many things that do indeed hit the nail on the head! But, there are many things that do not figure into this equation.
I remember my gram having fatty spot on her hands and playing with them as a child. I was just amazed at them! I am sporting one fatty spot on my left hand, and on my mother’s left hand as well. We all 3 have complained about all over severe body pain as well. I know my sis suffers from this as well but, I am not sure if she had it prior to being exposed to a toxic oil spill in her basement. I do know she has been TIRED for years.
I could see the fatty spot on my hands being sucked out... NOT the ones in my neck. The neck lumps are different from the fatty one on the back of my hand. The neck lumps are well defined kinda like a kidney bean.
Is it possible that this could have progressed to something else as well? I mean the fatty lumps.... At first they were just fatty... then they became more defined and changed inside.
This Adiposis site says, they are found in the lower trunk... were most of mine are on the neck, in the nose, and at the base of my head. So, that throws me off concerning this avenue. As well as the dry skin, hair, nose, ears, the hair falling out, etc.. But, it does hit on many other things!
Both Hodgkin’s and Non, Hodgkin’s. & Adiposis, can cause enlargement of organs. and/or, I could have enlarged lymph nodes under my ribs... it is something to think about.
IN one of the pages It states that prednisone is the drug of choice,,,, the last time I took that, my neck lumps hurt like he%*! They made me feel terrible! Really worse.
Is it possible that I have carried these neck lumps for so long that they have attached to my collar bone, and that’s why it hurts so bad? Maybe the size and pressing on the bone for 18 years has made it sore? I don’t know.
So, some things are correct… others don’t play into it at all. But, it is an avenue that is going to be further explored.
These lumps are so big today (under my ribs) I cannot sit up for more than 15 min before I’m in agony.
Ok going to my trackers and updates for today. If the swelling goes down any (under my ribs) I will try and get back on later.
I too feel so bad for you and glad to see you getting support "finally".
I,m also still trying to find answers for symptoms pretty much just like yours.
I also have other serious health problems that maybe could be treated?
But like you and so many other people, most Dr,s (a great many of them)
Simply don't listen nor test to see what the problem is.
For myself this has been true for the past 40 yrs.
I can count on one hand of those very few rare Dr's One could actually count on and trust. Most all of them later retired and went on to "research", good for them but bad for me and so need another great caring Dr.
Hang in there, I wish you all the best and send you my prayer's.
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