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Don't give up, Dadams9041. You are facing a challenge, arise to it! We are all responsible for our own health. SO many people are suffering more than we are. Think about ways of improving your life. Diet, exercise, meditation, Chi Gong, etc. Be calm, be brave.
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Hi Dadams9041,

Don't give up! I, too, feel the same way, but I know giving up is not an option. My doctor took 13 more vials of blood today. If you don't like the answers you're getting from your doctor and she can't give you an answer, find a doctor who can. I really think the swelling is related to the cortisone. We all have the swelling and it seems we've all had cortisone or steroids in one form or another, so I, like you, don't buy that it's not related. Is there anyone on this site who has these lumps (not swollen glands) who has not had a steroid or cortisone? I would be interested to find out. Maybe if we all agree to send in our pictures and our stories to Dr Oz or something, maybe we'll get an answer. Hang in there, there are other people going through the same frustrations. Stay strong and find a new doctor :-)
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Dadams9041, Please do not give up whatever you do. We are getting the same thing. Doctors (Med. Professionals) have no idea what it is or what is causing it. The best diagnosis I have so far is "Madelung's" syndrome. Is that it? Still not sure. Lymph nodes play a part yes. My wife has NO pain and the swelling seems to increase with stress. (?) Ultrasound (Sonogram) shows only "fat" tissue. CAT scan shows Enlarged Lymph nodes R. side only. Antibiotics actually Elevate her White Blood Cell count. Again (?). It is quite possible this is a completely New phenomenon. Our polluted air, water and soil. "Bio-engineered" foods, Irradiated fruits and vegetables etc. etc. We are living in a Totally New environment and are bound to see new diseases, syndromes and conditions. AIDS was unheard of 40 yrs. ago. NOT to suggest it is anything like that-just an example of "new diseases". We take Prilosec and similar meds. like candy to treat Stress unheard of 50 yrs. ago. This may be-something Completely New. "We" are continuing our search for an answer. Don't give up. Keep track of any changes and keep us all informed on this site please. Thank you, Docmex
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Hello everyone. My name is Kristin and I am going to be 32 Sunday. I live in Southern NJ, have two boys 9 and 5 am a stay at home mom the last 6 years, and before that worked as a receptionist in the auto selling business from 2001-2005, when I went to accounts manager until 2006 when I quit work to stay home. I have never taken cortizone, or prednisone. In December I started getting really fatigued, to the point where I nap during the day for 2-5 hours at least 4 days a week. (Very odd for me since my sleep schedule had been 11-7 as long as I can remember, so not like I'm not getting enough sleep, and sleepy from change of sleep.) Also in December I noticed a lump in my right armpit. Didn't think much of it, but it got bigger so I went to get it checked at my yearly OBGYN appt. on Thursday 3-1-2012. She said definaty a palpable mass and needs to be ultrasounded, as well as my right breast, since she felt a lot of small masses there as well. I have no insura nce, so have yet to get ultrasound done. While there I explained my fatigue, the fact that I've been having weird headaches recently as well, that are not my usual chronic migraines. She did an exam and said my thyroid is enlarged. That I should let my GP know. I figured no big deal whatever (again no insurance). That Monday 3-5-2012 I got the feeling like the wind was knocked out of me. About 30 minutes later I got a weird ache in my neck on the left side. That's when I noticed swelling right above my clavical bone. Called my GP who prescribed Amoxycilin thinking it was an infection. Called him back Tuesday when I got the same pain in my neck right side, and noticed same swelling there right above clavical bone. He said let meds work. Called again Wednesday when I began to feel like I was being choked and noticed the swelling was.around whole neck. He didn't seem concerned and said to wait it out over night, unless I started having trouble breathing, then to go to er. I went to bed, and did feel better the next day, but still had the swelling. Over the next few days, I got numbness and dead feeling in my left arm and leg with swelling in my left foot. Again Dr wasn't concerned and still insisted on me not coming in, even though I made it clear I wanted to be seen. Called Monday with a sore throat thinking maybe strep, which again he didn't think it wax necessary to come in and swithed my antibiotic to a zpak since swelling wax still there. Also said if I had dental work it could be an infection from that. I did have dental work in Dec, and Jan where they put crowns in front two teeth. Went to dentist Thursday who said all was healing properly, and took exrays that showed no signs of infection anywhere. Did go back this last Tuesday to have a wisdom tooth and two other teeth that had broken pulled, just cause he said if any infection developed it would be from those teeth. So far that is all healing fine, so not dental related at all. I also was in hospital last Thursday/Friday 3-15 thru 3-16 for a 6mm kidney stone. Still haven't passed that sucker yet. Did mention the swelling and noone really looked into it. I guess since what i went in for was being taken care of. I have had 7 kidney stones the last 2months, so someone did mention maybe kidney disease, since it can cause swelling in different spots of the body, as well as fatigue, headaches, dizziness and loss of concentration, loss of appetite, hair loss, blurred vision and increased stones.....all of witch are the symptoms I've had. Gonna try and look into it, but after I find a new Dr., since my current one isn't being too concerned. I did have blood work done at the hospital, and my white cells were slightly elevated, but not to where they were too concerned so I'm hoping that means not cancer. I always thought cancer would show high white blood counts right, or am I wrong there? Anyways I have a lot of the same symptoms you have all been talking about, including the shortness of breath and chest pains off and on. I haven't taken steroids, so there's no connection there, but again was told my thyroid is enlarged. I also was diagnosed two years ago with a protruding disc at my C6 and C7 vertibrae in my neck as some others have mentioned. I just wanted to throw my info out there since now I know I'm not alone. I hope to hear to good things from everyone in the future and will keep you all in my thoughts and prayers. Hoping at least one of us can get a decimated diagnosis so the rest of us can know what to look for. I will stay.in touch as I find a new Dr and go thru my tests..... :)
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* that was definate diagnosis, not decimated diagnosis.......stupid auto correct....lol :)
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Hi Everyone! Thank you for bringing me back to reality and caring enough to write. I am thankful for all of you. I don't wish this all on my worst enemy, but I am glad we don't have to face this alone. I am sorry that my post was so negative. I have just been so down the past few weeks. I am facing alot with being sick, as you are...the biggest one besides not feeling well every day is I am close to losing my job. I am the health insurance carrier so if I lose it I will have no health insurance, nor will my husband and four children.

I have a question, Find a Cure...how did your doctor test your cortisol levels? My doctor took vial of blood and checked my cortisol level at 2:00 in the afternoon. It came back in the normal range. I thought cortizone was acurately taken by blood test early in the morning and in the evening or by 24 hour urine test. Also, what test did your doctor do to come to the diagnosis that your adrenal gland wasn't working correctly? Is there a test for that?

My vitamin D levels were also low and now I am taking Vitamin D every day. My minor muscle aches are a little better. But my other symptoms are still there on and off with a vengence.

The swelling of my neck started after I had went through series of 2 cortizone shots in my foot, and then 2 prednisone packs which I took as directed, weening myself off of them each day. Shortly after going off the prednisone, I went to the ER because I thought my throat was closing since I felt choked and they gave me solymedral (steroid) by IV. The next day the sides of my neck above my collarbone swelled up and it's been that way on and off for 19 months now. Most of the time the lumps go away when I sleep and get bigger as the day goes, although I have had days when I wake up and they are already big.

I have an appointment for my mammogram tomorrow. And have an appointment with the ENT doctor (the 3rd ENT doctor) and the Rhumetologist again the first week of April. I'll keep everyone posted.

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I'm sorry the above post is mine...I forgot to sign in.
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Hi, Kristin, welcome to the club. We share your concerns, we're all in this together. Your contribution is helpful. No steroids, that information is useful. That, and your enlarged thyroid. The proximity between thyroid and this swelling is hard to ignore. Anybody got a Geiger counter I can borrow? Just kidding....but radiation needs to be ruled out. Yes? No?

P.S. Dadams9041. Very glad you are back in the saddle.
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Hi Dadams9041,

Hey, if you can't vent to us, who can you vent to?? The stress of losing your job only adds to you not feeling good. I can relate. I think it's really important for all of us to take a proactive approach to our health, as stonge49 said. It's all important - mind, body and spirit. To answer your questions. I saw an endocrinologist and my cortisol levels were checked by a blood test at 8 a.m., so you are right about the time. I also did a 24 hour urine test. They then sent me to the hospital for an ACTH stimulation test to see if the adrenals were working properly or if it was an issue with my pituitary gland. (This test was also done at 8 a.m.) My adrenals are working, but in the VERY low range. I've been taking Licorice Root Extract for my adrenals, along with other supplements and based on a recent saliva test, the supplements seem to be helping. Check with your doctor as Licorice Root can cause high blood pressure and should only be taken for a short time. Some doctors don't believe in saliva tests, but I'm open to different options and opinions. My saliva test also showed that my immune system is in the extremely low range, so I'm taking probiotics for that. 

I'm taking 50,000 IU's of Vitamin D for 4 weeks and will then drop to 1x week for another 8 weeks. My D level was at 23 ng/mL and the reference range is 30-100. (Blood test) My DHEA levels were also very low - 24 ug/dL with a range of 27-199. 

This week, a co-worker turned me on to a book written by Suzanne Somers. It's called Breakthrough, eight steps to wellness. I started reading it and I can't put it down. I haven't read the entire book, but maybe someone will find something that clicks with them, or maybe finds a doctor who can help them. I believe more and more that there are other options that my doctors aren't looking at and it's up to me to help find my cure. I'm very excited, I bought myself an infrared sauna this week and it will be delivered next week. I think it will allow me to sweat out the toxins because I can't do it through exercise. I've also started drinking distilled water (makes you pee a lot!) but it's good to clean out the liver and toxins. This, also, is a short term treatment, (I'm only doing it for 1 month) I'll then move to spring water, as I found out that the reverse osmosis water I was drinking is not as hydrating. I'm also going to add in 1 gatorade a day to help balance my electrolytes. Another thing I'm hearing from every source is rest. Getting to bed before 10. I've been dealing with some insomnia, so I'm going for a sleep study next week.

Kristen, welcome to the group. I hate to say it, but I would definitely get a 2nd opinion, as it sounds like your doctor isn't concerned enough.

Docmex, I agree with your thinking! 

I'm off to bed! Good night!




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Hi there, have been struggling with same problem? Doctors cant seem to determine the reason. Have any of you been in an accident the last three years or moved home and picked up some heavy boxes? I am absolutely frustrated!
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Your symptoms seem to show that you have lympedema. The gel like fluid is called lymph. It is caused from blocked ducts in your lymphatic system. See ur doctor if swelling is sever. If mild a MLD massage therapist will help drain.
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My husband has these lumps (also not swollen glands, according to the cat scan) and he has never had steriods. He is on 8 different prescriptions because of a heart attack he had in '09. GP doesn't know what it is but referred him to an ent. His appt. is April 5th. I'm very anxious to find out what is causing this.
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I also have had the same symptoms for a couple of years now, but it goes away. Recently it came back, swollen on both sides, now however, if I push down just in back of the swollen area it is sore. It feels tender on both sides, and very puffy like a gel pack in front. I live in Central New Jersey
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Have you had a doctor take a guess at what might be the cause? Are you a man or a woman?
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Hi everyone! 

Just an update....

I had about 6 days of feeling great. It was wonderful!  Then, I was very sick Thursday and Friday. This time I had the neck swelling on both sides, very nauseated, very dizzy, shortness of breath, pain in back of my neck, and arm aching like body ache when you get the flu. My hands and feet are also now tingling.  So today I went to Rhumetoid doctor who is also an internal specialist. I told him about the feeling great and then it coming back, and also the other symptoms that I had this time. He didn't seem concerned with any of it. He told me to take cymbalta???? I questioned him on the idea that Dot had on the lympedema. He said that your whole body would be swollen if my lymphatic ducts were blocked. I questioned him on how these symptoms come and go together and what he thought could cause these symptoms? I asked him if he had other patients that he sees with these neck swellings, fat pads, or whatever they are? He said that they are quite common and he sees many. I don't think he is telling the truth. So, I asked him how to get rid of them? He said lose weight, they are caused by fat. I said if you see many of them, then how do you treat them? Any meds? Surgery? He had no answers, except to say they could be removed by surgeon but he didn't recommend it. He said just take the cymbalta and come back in 4 weeks. I didn't make another appointment. I am done with that Doctor.

I have an appointment with my third ENT doctor on Thursday.

My prayers go out to all of you. Keep posting....maybe one day we will all get answers that make sense and a cure!

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