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11/18/2012 12:57 PM

subcutaneous spheroids

RUK
Posts: 83
Member

Has anyone been told they have subcutaneous spheroids?
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11/18/2012 01:47 PM
Garburt
Posts: 288
Member

No, I have not, but I googled this and one thing leads to another. What if our fatty tumors are a defect in our bodys healing responce. I have seen articles on how the lymph fluid is a perfect fluid for growing different tissues. Try googling this spheroid-forming cells derived from subcutaneous tissue. I found articles on spinal cord repair and what seemed to me they were talking about nerve growth. Just more ???s

11/18/2012 11:57 PM
RUK
Posts: 83
Member

So basically, I have more questions now than answers. Dr. Herbst is very kind and very thorough. Diffuse Dercum's. Lymphatic system that is not working properly, lots of subcutaneous spheroids, lipomas, thicken fat in hips, buttocks, abdominal area and thighs, lipomas in spinal canal causing nerve problems, leaky CSF which explains severe decrease in sense of smell and eye problems in just one eye, velvety smooth skin, and testing for Mast Cell activation disorder. treatment at this point,more tests, increase dextroamphetamine, continue lymphatic drainage, follow RAD diet. I now have an appt with neurosurgery, pain management doctor, urology added to my already long list of specialist. I think I am running out of patience........

11/19/2012 05:50 AM
wendyew
 
Posts: 623
Member

WOW , i am glad you went to see Dr. H but oh my goodness! All that is sort of hard to take. I guess now it is just rule out what you can ,fix what you can and live with the rest. Good luck and keep us posted as you finethings out. W

12/28/2012 07:16 PM
cta7978b
cta7978bPosts: 338
Member

I had subcutaneous spheroids on my evaluation by Dr. Herbst as well. Appears there might be a connection between Ehlers-Danlos or other connective tissue disorders and Dercum's disease. Just check out [some of] the symptoms of joint hypermobility [connective tissue disorder];

-a tendency to bruise easily

-fatigue (extreme tiredness)

-irritable bowel syndrome (IBS) – a disorder that affects the digestive system, causing tummy pain, diarrhoea and constipation

-postural orthostatic tachycardia syndrome (POTS)

-a sense of anxiety – feelings of unease or worry

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/ Symptoms.aspx

Some forms of Ehlers-Danlos have subcutaneous spheriods and fragile blood vessels..

Somehow this must be connected? Maybe you have to have a connective tissue disorder and then something to set off the subcutaneous fat inflammation to cause the Dercum's disease?

In theory my diagnosis is a supposed delayed hyper-reaction (allergy) to my BCG cancer immunotherapy, which somehow overloaded my lyphatic system. I have always had extremely clicky joints, can crack my neck, all my digit joints, back, wrist fairly effortlessly and can pop my shoulder out of joint at will.. Nothing painful, but none of my family members or friends had the same affliction.

So, maybe lymphatic adipose tissue inflammation response + some connective tissue disorder causes Dercum's. So, if your inflammation response is temporary (say an allergy) then the condition can get better if the inflammatory source is removed. If the inflammation is due to some progressive disease, which causes constant inflammation, then you can only hope to slow down the progression.

Just thinking outloud..

Post edited by: cta7978b, at: 12/28/2012 08:31 PM


12/29/2012 11:10 AM
Garburt
Posts: 288
Member

I just got my first 2 hour lymphatic massage yesterday. I then went to some family outings. I can only travel about 2 miles sitting in a car without severe lower back pain. I carry a tennis ball, which I place between the seat and my back to move my lipomas off of the nerves causing the pain. Yesterday, after the lymphatic massage, I did not have any pain in my lower back and we drove to 3 different gatherings including 2 roller coasters. I hit my limit after those rides and the pain was back. I had 6 hours of a near normal life!!!! I do believe that there is some hope for a better life. It's just a matter of stopping the irratation and helping our nerves and lymphatic system to repair.Smile PS if you can afford it you need to try a lymphatic massage. I wish I could afford to get more or maybe I need to adjust my finacial priorities. If I knew this was a cure to my nerve pain I would definitly afford more.Grin

12/30/2012 12:34 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

What a great thread! RUK..you have hit the DD wall! Everything you listed is indeed part of the Dercum's Syndrome. So now we see what Dr Herbst is up against. Thank heaven she is still brave enough to try and help us. You may run out of patience but the doctors won't run out of patients! If you can get a PCP who "believes" in DD and ask all of your specialists to send reports to your PCP..and keep an updated list of all your meds and supplements..to give each doctor...I find this works well. I am so sorry we don't yet just have a pat answer to all of the DD questions. We are all definitely working on it! DD pain demands your attention and we have to support each other and just not give up! We get reports on here all the time of people who have found ways to deal with DD and improve their quality of life. "Subcutaneous spheroids"? Give me a break! "Round balls under the skin" in people speak. Not much of a diagnosis. If it wasn't for the big words we would all be doctors.

Garburt..you kill me! No roller coasters with DD! What were you thinking? Just kidding..I cringed when I read your post. You are so right about the lymphatic massage. It sounds like you have a winner in the massage department. It is the best thing we can do for ourselves in my opinion. They have to understand light massage..not muscle massage and it can really help. You are lucky to have found a great therapist. I am glad you got to remember how it feels to be normal. That makes it all worth while...so we have to keep going. It is great that RUK got to go see Dr Herbst and she told you how it is. I went for 50 years before I got a correct diagnosis...many very sad hard years..all alone with this thing. That is why I do this..you all help me so much!

cta7978b..your post is right on..you are really understanding all of the ramifications of DD. Thanks for all of your help in the group. Hugs, Grandma Sylvia


12/30/2012 07:53 AM
Garburt
Posts: 288
Member

Just to let you know, this morning I felt the pain of my fun on Friday. It was painful to sleep more than 5 hours. I will go to the spa and swim a few laps to get the Lymph going again.

12/31/2012 08:39 AM
wendyew
 
Posts: 623
Member

What a post! the more posts i read the more confused i get. I had lite touch massage ,only could stand 20 mins. then i had to take a nap to recover. Garburt riding the roller coasted must have knocked the stuffing out of you. Now i want to wish everyone a happy new year! Lets close the books on this year and pray for new things next year. Hugs to all Wendy

12/31/2012 07:01 PM
Garburt
Posts: 288
Member

In worse pain today but it was really fun while it lasted. Memories to reflect back on. While sitting here I found a interesting blog for all my DD friends. Happy New Year!!!http://inmybodyofart.blogspot.co.nz/
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