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My test results came back and I have mononucleosis!! Get tested for the EBV. 
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so i wemnt for my shoulder post-op today and ask the ortho about the swelling in my neck. He said he thinks its fro the lower disk and vertebra in my neck but want to finish my shoulders before he starts a new thing.  I can say I have had a lot of stiffness in my neck for as long as I have had the swelling.  So it looks like I'm still in the dark about the swelling in my neck. I t does seem more pronouced when my shoulders hurt more, but when my shoulders hurt more so does the stiffness in my neck.  Oh well, maybe I'll find out as soon as I get done with my shoulders.
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After reading all these posts saying doctors said it might be this and it might be that, I wish they would just say they don't know.  We could do the guessing ourselves.  I have the same type of pads on both sides of my neck.  They appeared suddenly about six months after I was diagnosed with Hypothyroidism and two months after being diagnosed with a multi-nodular goiter.   I was waiting for a biopsy on the thyroid nodules, was pretty stressed out, and been taken off the thyroid medication for four or five weeks at the time because my symptoms weren't consistent with the diagnosis.  I found out I have Hashimoto's, but docs say it's not from that.  I went to internist, an endocrinologist, an ear nose and throat doctor, two dermatologists, and had a cat scan and a chest x-ray. None of the doctors seemed concerned, and one told me things change as we get older.  Duh, who knew?  I recently went to a different endocrinologist who said she is very concerned about this, and ordered a 24 hour urine test to check for cortisol, and who knows what else.  She said she doesn't think I have it, but it could be Cushings. 

About a month after these pads appeared, I looked in the mirror and saw unusual swelling over my cheek bones.  Then I went to a couple of cosmetic surgeons.  One told me I got these things on my face because my thyroid was so out of whack, everything was moving around under the skin.  They are called Malar pads and don't go away.  Guard against any trauma to your face, because I had been smacking my cheeks to get some color in my face earlier the day I noticed them, something I have done countless times with no ill effects.  Most doctors don't believe they appeared suddenly, but there is no doubt they did.  I looked in the mirror and said, "What the heck is that?"  I'm just mentioning this because I wouldn't want anyone else to get them.  There doesn't seem to be any way to get rid of them.

I'm 66 and was in good health until July of last year, except for borderline high blood pressure.  I had a complete hysterectomy when I was 32 and took Estrace for 27 years.  While taking it I felt great and looked quite a bit younger than I am.  Since doctors quite prescribing it, it's been down hill all the way.  Someone else here mentioned Dr. Oz and Dr. Roizen.  They have written an article that says contrary to popular wisdom, they recommend hormone replacement.  I'm mentioning this, since this the pads we have seem to be a woman thing.


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how many of you have been on prednisone?
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I have the same problem as posted above: swelling on boyh sides of my neck, between my neck and shoulder, just above my collar bone. And it dose like two bubbles on boyh side of my neck. this just happen tonight 5/23/11. I don't know what this is. And I  don't know why this happen to me. Please dose any body know. Oh I do jave some pain in my chest some times and a little down my left arm. but the DR tell me that I have a good heart. Know heart problems. Someone please help.

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Hi there,

I saw my ex-husband yesterday and was really concerned about him- he has the same symptoms that you all describe. He is a 50 year old male, and alcoholic with scoliosis and psoriatic arthritis.

I've been doing a lot of research here this morning, and I think that it is Madelung's Disease (aka Multiple Symmetric Lipomatosis). Here are links to two sites with information:

http://www.lipomadoc.org/madelungs-disease.html

http://www.cushings-help.com/madelung.htm

Here are images:

http://www.lookfordiagnosis.com/images.php?term=Lipomatosis%2C+Multiple+Symmetrical&lang=1&from=32

Thanks for helping me to get some seed information! I wish you all the best. And to those of you who are offended at hearing that it's 'just fat'- this is a rare syndrome that occurs in somewhat overweight people, and it adds fatty deposits. You are not alone! This is very often misdiagnosed as fat. I suggest doing some more research on MLS and seeing if it sounds like what you have- and then helping your doctor to diagnose it! It can't be easy to have to be current on all the rare diseases too.

Good luck!
Cecilia


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The swelling I experience is always worse at night. In the morning when I wake up it's non-existence. But by the end of the day it's very pronounced. To the point that it sometimes inhibits my ability to raise my arm up. Does anyone else experience this, where the sweling is less in the morning and more at the end of the day??
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I too have had this problem for about a yr now. One day I noticed the swelling in the same exact places you all are talking about. I went to the Dr, and just like all of you...he came up with nothing. He said I must have some type of virus that Im fighting off. Its so frustrating! Ive had my blood tested for infection, my thyroid tested and the Dr has no answers. Reading all these makes me a little discouraged too :( Im ALWAYS lathargic, It seems like I never have energy and I run a low grade fever alot. I have a hormone imbalance I know that for sure...I wonder if the two are related? All I know is Im sick and tired of feeling sick and tired :(

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It started with me 8 months ago.  I find it curious so many who have posted here started having symptoms near the same time.  I first noticed a sharp piercing pain in my left elbow.  Soon after, swelling in my left arm just below the arm pit. Then the swelling extended to my left arm pit.  The pain in my elbow subsided and then my neck began to swell daily, right at the collarbone.  The swelling now extends around my neck to the back where I have a hard knot at times.  Currently the swelling is extending across to the right and I have a heavy ache in my left chest area just above the breast, and the pain goes clear through to my back near shoulder blade.  At first the swelling came and went which made it difficult for my Dr.  Usually by the time I could see the Doc the swelling was unnoticeable.  Now it remains all the time, yet increases frequently.  It has caused some depilitation in my left arm, movement is restricted and often painful...and also my neck.  Other symptoms since this all started are...horrible fatigue, chronic sinus congestion, pain in temples, irritability, blurry vision, depression, phlem, jaw clinching, and random sharp piercing pains in other areas of my body that come and go.....the top of my foot one day...an isolated spot in my ankle joint another day...an isolated spot on one of my ribs.  When the swelling increases in my collarbone it feels as if something has got a grip on my throat..tight and restricted with trouble swallowing, the tension becomes so great that my left shoulder actually pulls up toward my ear.

I have had blood work done that all came back normal, a normal paps, an ultrasound of breast where they found a cyst in the left and removed it.  I have been given 2 rounds of steroids.  I am on alergy medication which does not eliminate the phlem or congestion.  I am 48 and Doc started me on low dose estrogen 32 days ago which has not eliminated the symptoms, not even mildly.  I have had my thyroid checked and all is normal.  My heart is healthy and oxygen levels are good, blood pressure is typically lower than normal. I am 20 pounds over weight, I smoke, I rarely drink nor do I use drugs.  Typically I am pretty healthy and very active, however I have occasionally had trouble with kidney stones.  I eat healthy for the most part.   My Doc is puzzled as have been all your Docs.  I plan to keep trying to get a diagnosis on this but same as many of you, the Doc is starting to look at me funny.  My next choice will be a chiropractor.  I feel sympathetic for anyone who is suffering with this especially since the Dr.'s can't seem to figure it out, yet I feel less alone.  It is so frustrating!

 

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Hi Everyone! I am the 50 year old woman that posted on 03/04/2011. Almost 4 months later I am still experiencing the same swelling in my neck and symptoms. I went through a period of several weeks where all my symptoms went away and then it came back. I still have no answers from my doctor. She has continued to run various blood tests and everything is normal. The only thing she has found is that I am in Menopause. I was wondering if any of the women who previous posted on this post have received any answers or what is going on with you now.

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I can tell you with confidence that it is not menopause causing your symptoms. My Doc suspected the same and after months of menopause treatment I have had no change in my condition. There are also men posting here and young women with the same symptoms. It's a mystery!
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I agree....I don't think it is menopause either. It is so frustrating to live like this....not knowing why the swelling comes and goes, what causes it, if anything can take it away or make it somewhat better, or what to do. Today I feel like I am being choked. I'm dizzy, no energy, and sick to my stomach. Both sides of my neck are swollen. I feel bad for all of you who are dealing with the same or similar symptoms. It seems like so many on these posts and other posts have posted about their sickness but it doesn't say if they found out eventually what it was or if it went away. I would like to know that there is some hope to this mystery illness....

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I have had so many of your symptoms: swelling above the collarbone on both sides, fatigue, congestion, blurry vision, random sharp piercing pains here and there, twitching eye, problems walking right  and then some..  my doctor ran tests and found that I have a B12 deficiency and deficient Vitamin D.  Since taking B12 most of my neurological symptoms have gone away.  I still have the swelling (which I've had for fifteen years so do not think the two problems are related).  But I found through research that people with autoimmune problems (like my Hashimoto's disease of the thyroid) are more likely to become B12 deficient.  This is a very serious problem and can lead to all sorts of neurological problems, including dementia, so ask your doctor to test for this.
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Update to my previous post....Had a root canal last august before my previous story. Then had a crown put on. After my previous story, long story short, my tooth was actually still infected and they removed it and it came out in pieces. Jaw had infection and they had to scrape the jaw. So it's all infection down in my neck and all of that area that is causing the swelling above my clavicle. Panic attacks vanished once the tooth was pulled. Now it's the trial and error with antibiotics.  I am going to request the oral surgeon to do a culture to find out what specific type of bacteria it is. THen they can put me on the right antibiotic. Food for thought for those of you who are unsure about what the cause could be. Seems like dental infection is a huge possibility. keeping in mind i had no pain at all with this infection in my mouth. Just the swelling causing discomfort solely on my entire left side. Wish me luck!
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Update....In March I had extensive dental work done, root canal and treatment of infection.  My other symptoms have remained and are steadily getting worse, I am loosing weight now and experiencing muscle weakness.  My Doc is suspecting Lymphoma and proceeding with the tests.  CT scan first and biopsy of glands.  I'll keep you all posted. 
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