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Do you notice that when you touch them they tend to "swell" up? Just weird I think. I'm giving serious consideration to the steroid connection. Same here, I had a very bad breakout of "hives" (urticaria) while in Mexico and a local doctor ordered an injection of Prednisone(?) and a medrol dose pack. This was in 2003-04(?). Recently I had another allergic reaction and broke out in huge hives again and had another Prednisone injection plus Prednisone tabs. Thinking back 2003-04 is when this started and has gotten worse (Ithink) since the last injection. I really need to check on dates of this last injection and the increased swelling. This large lumps do not go away anymore but just stay and look horrible. I do not have any pain associated with them though and the Doctors have the same findings as yours do, they don't know! Very discouraging. I need to get another CBC ordered because my WBC's keep going up with antibiotics and since I've been off them now for awhile I an curious. Unfortunately I'm visiting family in the states and need to get an order for one. New doctor time. Arghhhhh! Keep the faith! All good things, Docmex
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Hello all,, i went to oncologist and he felt i was ok,, since i havent had fever,, although i have had acid like reflux and cough . He tried to say it was all acid related. I told him that i have hives for 2 yrs now and swollen neck feels like im being choked in just past few months. Also i cannot eat much food at once it hurts and pushes up into my ribs causing pressure. I do have pain in my nodes in neck if i pressure on them and i feel pain in back of neck sometimes so bad i have to lay down. I was about to give up and tonite i talked to a dr off duty and she gave me a checkup looked for swollen nodes and said to rule out i must insist on ct scan and gallblader scan. That dont take no for answer to listen to my body. Her dad died of lymphoma and it wasnt apparent that he had it so she pushes for ppl to get checked if you know your body is having warning signs that are screaming at you, GOD please open the door tonite for all of us on here we need your help as drs. arent finding the root problem and we are worn down and in pain please
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After reading everyone's replies I'm pretty convinced what we are experiencing is due to the Cortisone. If you do an internet search for Cortisone side effects or symptoms of Cushing's Syndrome, you will find what most of us are experiencing. I'm not a doctor and I'm certainly not diagnosing anything, all I'm saying is look into it. If we can work together on finding a specialist who is knowledgeable of side effects from Cortisone and we all email him/her, maybe we can get some results. I have started some natural supplements on my own to cleanse the toxins. I'm drinking lots of green tea and just started taking grape seed extract. They are both great for removing toxins from your system. I'm also taking Calcium with Vitamin D-3. Make sure you check with your doctor before taking anything. My fatty bumps seem to be going down a bit, it's probably too early to tell, but I'll keep posting. My endocrinologist recently sent me an article that stated patients with Cushing's Syndrome can experience enlarged fat pads in the supraclavicular fossae and obscure the clavicles. It states this is one of the most specific signs of Cushing's. Keep after your doctors! Tell them you want a specialist who deals with side effects of Cortisone. I'm also going to contact the FDA in regards to this. Stay strong! We will beat this!

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I am a 38 year old female and have had a "swelling" above my left collar bone that increases and decreases in size. I first found it 11 years ago while pregnant with my second child. I went to an emergency clinic because it swelled to a painful, itchy large walnut size and felt hard. The Doctor at the clinic did not know what it was and decided to biopsy it. He almost crapped himself when he cut into the thing and blood spurt everywhere. I was relieved though. He got a lot of blood, fluid, and what he called old blood, clots and aged in appearance, out. He drained it and put a gauze wick, which failed to wick anything out over night, and the place healed after gauze was removed. I have a tiny scar.

It continued to swell on and off and one other time when it got large, hard and painful (due to being full, IMHO) I tried to have it drained again at the clinic and was refused. I was sent to a specialist who could also tell me nothing. He wanted to do a test with contrast and such and I refused. I just wanted to know if I was in some kind of danger but am not one to let them practice medicine on me. He did suggest it might be a venous lake, a place where blood and fluids may pool too fast for them to drain (hence high stress situations that increase blood pressure).

I personally believe it is a bit of a combination of strange anomalies. When by blood volume increased during my pregnancy I believe an area (vein) where blood and lymph fluids drain had a sort of "blow-out". Maybe it was weak before and would of happened eventually anyway but it happened. Now the balloon like area will swell on and off with stress and blood volume/lymph drainage just pools until it can drain properly. It is always there, sometimes small and soft enough to hide right behind my collarbone and sometimes medium size, soft, gel-like and others really big but it is rare. It takes days for the large swellings to go down. Most of the time time it is between small and medium moving back and forth behind the collarbone to more prominent.

I try to eat well and keep stress low. A Paleo/WAPF way of eating has helped and I think exercise would too but I am not consistent with it. I do try to walk often and have a moderate activity level. HTH


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Not what my wife has. CAT scan and Ultrasound show only adipose (fat) tissue and enlarged lymph nodes on R. side. NO pain. Not hard-always soft and "mushy" feeling. Thank you for your input and wish you the best but our feeling is this is not what most are writing about. Docmex
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Mine is also just a fatty soft spot. It does cause discomfort when it gets bigger, but most of the time is not bothersome.
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Hi All

I am going to print out some of our posts and take them with me to my doctors on Weds. Thought is would be good to show her that other people are also experiencing the same symptoms in different areas that we all live in. Also want to share with her the possible connection with steroids. Maybe we could come up with a questionaire type thing where we can copy and paste the questions and then each answer and do our own case type study to see what is the same and what is different with each of us. The one constant we all share is that we all have these gel like swellings on the side of our neck above our collarbone. Then maybe we could take this information back to our Drs. to see what they can come up with.

The one thing that I have noticed is some of the people who posted on this thread earlier, don't come on and say anything more. It is really important that if anyone here gets an answer to come back and update the rest of us.

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Hi Dadams9041

Great ideal Here's my update: I got the results of my blood work yesterday and everything is pointing towards Adrenal Insufficiency, which is the opposite of Cushing's Syndrome, but is still caused by the cortisone. (I don't have enough cortisol in my body) The symptoms are very similar to Cushing's and the natural treatment is almost the same. The cortisone injections caused my adrenal glands to stop functioning properly and now my body is not producing enough cortisone by itself. Guess what they want to give me to fix this?! You guessed it! Hydrocortisone!!! Really??? Isn't that what caused all of this in the first place?? The doctor reassured me that the dose is really low and I won't have side effects. I'm not going to be stupid about this, but I discussed natural options with him and he said I could certainly give it a try first. This condition can be deadly if left untreated, so I'm taking care of myself and keeping in close contact with my doctor. He said it could take 6-12 months for my adrenal glands and my system to recover. 

I'm happy to report that I'm no longer losing my hair! Yeah!  (I think the Vitamin D and Calcium did the trick!) My blood tests also showed I'm hypoglycemic (low blood sugar). My doc still doesn't have an answer for my lumps though :-( At least now I know what is causing my fatigue and muscle weakness and I can work on treating the adrenal glands. If I didn't mention it before, be sure to ask your doctor to check your Vitamin D levels, as this is usually not done on most blood tests. 

Best of luck with your next appointment! Keep us posted!


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Hi Everyone!

Find a cure- I am glad that you are getting some answers. Glad that your no longer losing your hair!  Just sad that you have to go through all of this. Maybe through all of this the lumps will go away. I certainly hope so.  Take care of yourself and keep us updated.

An update......I went to my doctor's today. I shared with her our posts here and that there are others who are also suffering from these same symptoms. I also shared with her our thoughts on the cortizone or other steriod medications and if there could be some connection. She is going to look at them. While I was in her office she called and spoke to a vascular specialist. She told him about the swellings in my neck and other symptoms. He wants to see me. So I will make an appointment with him.

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i had same issues being told my lymph nodes just swelling.. well i was having a carotid arterie sonogram ultra sound what ever it is called Well anyways my plaque build up test came back fine but abnormalitys were found two for sure over a centimeter on my thyroid they werent even lkooking for that now talk of biopsi
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Did you find out what is wrong? I feel the same way.
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Hello, I have had this same swelling on both sides of my neck above the collar bone for about 3 days now. Last week I had problems with my right ear which is a chronic problem. I see an E.N.T. every three months for this. At the same time I went to him I also felt as though I had a terrible head cold which disappeared the next day. The day after that the cold was back and the next day gone again this went on for a week and is continuing to happen (bizarre!) The Doc just called in a prescription for an antibiotic which I will take (reluctantly I might add) because he thinks the swelling has something to do with the ear. On the other hand I have a goiter on my thyroid with nodules that was found by another doctor six years ago and was never followed up on and now this has me concerned! Even though thyroid problems are rampant in my family my ths testing always comes back normal. I have had the test where you take the pill that makes your thyroid glow and what it shows is a thyroid twice the size that it should be. In the past few years (5 to be exact) I have put on 45 pounds which is not me at all. I have always weighed around 120 so on top of everything else this devastates me! Would anyone have any Ideas to share?

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Hi Ljames,



Have you had any cortisone shots or taken prednisone or any other corticosteroid? My doctor said the lumps can come from cortisone. I would try to see an endocrinologist and get a full panel of blood tests done.. Be sure to ask to get your Vitamin D levels checked as well. No one has a definitive answer yet for me, but my doctor said there is fluid in there, along with the fatty deposits. (Because they swell up more during the day)
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I am certain my swelling is asa result of the arthritis in my neck and shoulders. The more pain I'm in during the day the more swelling I have. 
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Hi, I'm 22 yrs old from sydney and I have the same problem. Swelling on both sides of the lower neck mainly on the right side. I started having it about 5 and a half weeks ago, it's very uncomfortable and it puts pressure on my breathing which tends to give me anxiety, it's been happening every day or night and I find that panadol helps. My doctor has no idea what it is, I had blood tests taken and it said everything was normal and that I had had glangular fever in the past, my GP put me onto anti biotics as he assumes its some sort of infection. His other option was that I may be having a relaps of glangular fever, although there is no cure for that. But I don't believe that's really the problem. It's something else.... Something unknown by the sounds of it. He referred me to get an ultra sound - I had it and they said everything was fine, they could see the right side was inflammed but said it was within. Normal sizes. , I had some Small nodules on my thyroids but they said they weren't a dangerous size and they are harmless/normal. So I'm left again with no answer and discomfort. I feel like people think I'm over reacting and dont understand so I avoid telling people and when it swells up I'll take some panadol and find a quite place to hide or lie down. I've never had anxiety before but I'm all of a sudden getting it every day not Knowing when my neck will inflamm up, I guess I'm just worried that there is no answers. I'm highly considering of going to an ears, nose and throat specialist next week. Does anyone have any over the counter or shelf medications or home helpers that help when the swelling occurs?
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