Swollen Lymph node in Groin/Fatty Tissue in Neck

Hello,
Every time I get in a major flare I notice that I have a hard time walking due to my left leg is in SO much pain! Well, I finally noticed it is because the lymph node is really swollen. I'm swollen under my right arm too. I've gotten use to the sickness of being fatigue and rundown and weak(muscle aches all over) but I've never had so many lymph nodes swollen before. I even had a CT scan of my neck last week because I have a rather large lump (Dr. thought it was a swollen lymph node) but my Dr and the radiologist stated it was fatty tissue? It is huge! Has anyone heard of fatty tissue in your neck? So many weird thing going on when you don't feel good! Thanks for listening, TeresaK

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Dear Teresa,

I don't know if your Doctor is right or not about you having fatty tissue in your neck but when I have a flare-up the left side of my neck swells up and becomes very noticeable. It looks like I have a shoulder pad in my neck. It goes back down eventually so I know it's not fatty tissue. Does yours go away when the flare-up ends?

Cora42

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Hi Cora,

The lump in my neck has been there for a while, it seems to have gotten bigger over the past few months. It only hurts a little when the Dr. pushes on it. The ENT stated that it wasnt a swollen lymph node it looked like fatty tissue(strange) and come back to see him again if it gets bigger and he will biopsy it, but for now there is no reason to. I've never heard of large areas of fatty tissue in your neck! I will be seeing my Rheumy next week, he actually brought the lump to my attention a few months ago so I'm going to get his opinion. I know that I'm in the middle of a flare because I have lots of lymph nodes that are swollen, I guess this is common. I hope the Radiologist knew what he was looking at, and knows the difference between fatty tissue and sarcoid! Sometimes you wonder! Thanks for the info and have a good weekend.
Take care, TeresaK

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Dear Teresa,
I feel for you with the pain in your legs. I have been in so much pain in my legs and hips lately I can hardly get around. I am going to make an appointment to see the doctor next week and see if I can get some relief. Good luck and my GOD bless us all and find a cure.
Sincerely,
Wendy Burke

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Hi Wendy,
What do you think the pain is from? Lymph nodes?
Most of my leg pain is just my left leg and hip (upper groin I guess lymph node.) These flares-ups can really do a number on your body! Hope you get some relief from your Dr next week, so far I havent had much luck. Take care, TeresaK

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I have experienced the wierdest feeling in my neck - it's like it's full of fluid and feels very heavy, as if I have to lift my neck to keep my chin from touching it. Just feels very disgusting, not painful. I'm going to doc Thursday.

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Hello jgrover,

That sounds very uncomfortable. The lump in my neck doesn't feel like it has fluid in it, but it does feel like it moves around a little bit. Mine is over on the left side not directly under my chin. I was told last year when I had swelling under my chin from my ENT that my Hyoid was inflammed (the Hyoid bone is directly below your chin.) So that may be something to check with your Dr. on Thurs. Take care, TeresaK

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Hi TeresaK,

I am sorry that you are in so much pain. I was diagnosed with sarcoid after having a biopsy on the lump i found in my neck. I have enlarged lymph nodes in my face, in my neck and in every other organ. I can feel it all the time but i dont let it bother me. I have no pain but do feel tired if i over exert myself. I still told a job and household together. I think I am very lucky and blessed.

I hope your pain eases.

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Hi Boo1,

I just saw my Dr. yesterday and he increased the Methotrexate in hopes it will help the inflammation. He stated I was a harder patient to treat because the sarc is affecting my muscles/joints and skin and not my lungs so for some strange reason my body is not responding very well to the meds. I had a muscle and skin biopsy to get the diag. of sarc. The Dr. stated on the CT scan of my neck that it looked more like fatty tissue than swollen lymph nodes. So I guess I just leave this big lump in my neck. It doesnt hurt. He didn't say anything about a biopsy since it looked okay. It's good to hear that your doing well and not in any pain. Most of my pain comes from my legs and arms, I think it's inflammation, but I'll get it under control. I'm like you, very lucky and blessed to have the family that I have to keep me busy and going, but it's always nice to have this website to have people to chat with. Take care, TeresaK

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It is 1 in the morning here in Kansas City, but I can't rest because I keep scanning more blogs that describe me! I am new to the site but already feel this may be the most important site I ever visit. Everyone is a wealth of information. I have puffy, fluidy looking pads that appear on both side of my neck, just over my collar bone. Always at the same time. They come and go. I always attributed it to my congestive heart failure, that I was carrying a lot of fluid. I've mentioned to my doctor when it just happens to be present during a visit. He never has seemed alarmed.

I worry about my 28 year old daughter. She has lymph nodes the size of grapes in her groin area. She's had them off and on since she was a little girl, but doctors are not ever concerned. Now I wonder. She also has lymphocytic thyroditis and her thyroid is very lumpy. Now I wonder about that too.

Thank you everyone for sharing your knowledge and the many personal facts of your disease. My hope is in all of you. No detail is too small, because it affirms the facts of our lives.

God's peace,
Kathy

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Hello KathyKC,

It is unforunate that we all are suffering, but it is nice to have this website to share our pain and experiences to help one another. Sometimes we tend to feel all alone until we log on and see that there are so many other people going thru the same thing. This rare disease doesn't seem to be so RARE anymore! Take care, TeresaK

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HELL-O TERESA K. AND THOSE IN THE DALLAS AREA. IT NICE TO KNOW. I URGENTLY NEED YOUR DR NAME HERE IN THIS AREA. I HAVE BEEN LOOKING SINCE 2004. EVEN N.O.R.D COULD NOT FIND A DOCTOR FOR ME IN THIS AREA. ALL OF MY DOCTORS ARE AT U.T.SOUTHWESTERN ON HARRY HINES. THEY ARE NOW TRYING TO START A CLINICAL TRIAL FOR SARCOIDOSIS. WHAT DO YOU THINK? I JUST HAPPEN TO ASK.

I FEEL TODAY THAT WE ARE LINKED TOGETHER. BE IT BE DNA OR MOLECULAR. THANKS TO YOU ALL FOR BEING THERE .

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Hello Femi,

I started out at U.T. Southwestern in Dallas. Did it take you forever to get an appt? It took me months to get in on a referral from another Dr. I also had my muscle biopsy done by a surgeon from there. My Rheumatologist was there until he left a year ago to open his own pracitice. I was also seeing a Dermatologist there(she also left to open her own practice.) It was quite interesting to be the spotlight for 15 plus Drs. to come in and look at the red spots on my thighs. I even let one Dr. take pictures! But I guess it is a research faculity and from what I've been told one of the best one's in our area. Let me know what they decide to do about the clinical trials. Aslo if you would like Dr. info. I would be happy to give you my Drs. names. You can either email me: feb16931@yahoo.com or we can just chat thru this website. Take care, TeresaK

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Hi Teresa and group.

I stumbled across this site via google search for "swollen lymph node groin", since several of my moderately enlarged lymph nodes in the groin/upper thigh have really blown up. It probably has something to do with the Bunionectomy and fusion of the second toe - lymph is draining.....

I do not have Sarcoidosis, but I do have Dercum's disease aka Adiposis Dolorosa. Throughout my body I have many fatty tumors called lipomas. Some are just fat and solid, others are vascular (angiomas, angiolipomas...), some have nerves, fibrous, can grow in cluster like a bunch of grapes. These little buggars can grow anywhere, even in muscles, organs, bones. They can be encapsulated or diffuse. Pain, fatigue, brain fog, depression, some become obese, tumors/nodules that form around joints can really do damage to that joint - these are all part of Dercum's disease.

The fat becomes inflamed and even the lightest touch can illicit pain.

Dercum's Disease, Adiposis Dolorosa is listed in NORD, WHO.

Dr. Karen L. Herbst, an Endocrinologist-Researcher in San Diego, has taken on the task to try to unravel this disease. She does have a website http://www.lipomadoc.org. the website does a MUCH better job describing, explaining than I can right now!

Dercum's feels a great deal like Fibro. But with Dercum's you have tumors and many, many more trigger points.

One medication I began about 3-4 years ago to help with my muscle spasms is Mirapex. Originally it was just for Parkinson's.

Sarcoidosis symptoms, Fibromyalgia, Post Polio Syndrome, Dercum's have a fair amount in common.

I hope I've been of some assistance. Now back to my swollen lymph node in groin search.

"Do what you know is true".

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