Dercum's Disease Support Group

Hello All,

I was just seen at a Vascular Center by a Lymph specialist. There is a test called a Lymphoscintography that is to evaluate swelling in either the arms, legs, or both. They put needles in between the toes and fingers and inject a samll amount of fluid under the skin. Then they image you at 5 minutes, 15 minutes, 30 minutes, 1 hours, 2 hours, and 3 hours. I believe that this will make the lymph system show up and see how long it takes for the fluid to be moved thru the lymph system.

Has anyone out there had this test done? If so, please tell me if it was helpful and if the lumps showed up on the imaging.

Also, has anyone had Lymphedema Therapy? If so, was it helpful? Did it help to alleviate any of the DD pain?

Anyone out there have problems with the tops of their feet swelling and getting hard? After the fluid has gone down, the top of the foot is still larger looking and feels bone hard. Just the tops of the feet, the rest of the foot is fine. Was it ever diagnosed?

Please let me know. Celeste.

Celeste..I sent a PM to you. I would love to have the test you describe. I will ask my doctor about it. My lymphatic system is certainly compromised. I am sitting here in my wraps. it is hard to do anything when you are wrapped. Shoes won't go on and the bandages make your feet so big. Wrapping seems to be the standard treatment right now. I wish it could be stopped at the source...treat the DD and the lymphatic problems will go away! I am so sorry that you have this painful swelling. Mine has only gotten bad since I was about 60...six years ago. Good luck with your treatment. Hugs, Grandma Sylvia

Just an update to the lymphosintography.

I had the test done today. Piece of cake. I used some emla (lidocaine) numbing cream between my toes 2 hours before the appt. I then took one Lorazepam 1/2 hour prior to the appt.

The radiologist enjects lidocaine first between the first and second toe and the second and third toe, then medication is injected. There was just a tiny pinch from the lidocaine needle then no more pain at all. Very easy. Then you are placed on a narrow table and slid into a CT scanner at different intervals. 5 min, 15 min, 30 min, 1 hr., 2 hrs. They are watching your body pick up the injected fluid and carry it through your lymph system. The Scanner is showing them your flow and your lumps show up. They scan from your feet to your armpits. Very easy test. Now I just have to wait up to 5 days for the test results.

I will follow up with what the findings are when I get them.

Celeste.

Hello All,

Read the previous post about the lymphoscintography test and how it is done.

I just want to update you all on the lymphoscintography test I had done. The test showed that I do have a damaged lymph system. The test showed what they called collateral vessels had formed in both legs. In other words, my main lymph vessels have stopped working and my body has grown new smaller vessels around the damaged non-functioning vessels. This is why my legs feel heavy, why I can't walk for very long without haveing pain and swelling in my legs and also why standing can be painful. The test also showed I have an enlarged liver and that the liver was not functioning the lymph thru it properly either. The test also measures how long it takes your body to pick up the injected fluid and carry it to be processed and sent to the kidneys to be filtered and excreted. My pick up rate was OK, but started slow thru the legs because of the collateral vessels having to work instead of my main non -functioning lymph vessels. The only treatment for this is to have manual lymph drainage thru lymph massage and to use leg wraps every day. I have a non-alcholic diffusely fatty liver. My liver is enlarged because it is full of fat (probably lypomas from DD). This is probably why the lymph is also not going thru the liver correctly. When the liver is not able to work correctly, it affects your memory. This is the newest finding in Alzheimers Disease. Since this has been studied, they say that Alzheimers disease actually starts in the liver. I would then think that fatty liver from DD could also be causing our memory problems we have.

Celeste.

HI Celeste!

WOW - thank you for shaaring all of this. I am ther with the feet hurtngg o the top, the heavy legs and pain, pain, pan. My doc ordered a complete body scan and it show very little - arthritis primarily. I will ask him about the test you had.

My pain is of the scale and pain meds are doing little to help.

Take caer my friend - and thank you for sharing

Annie

Annie,

You know as well that the more we share on this site, the more we all will find out about this dreaded disease. I have always been so impressed with the posts on here. I am always shocked at how many other people have the exact same symptoms. I am always so thankful for others that have the same disease as me, so I know that even when some of my family and many of the Dr.s I have seen don't understand me, the people on this site always understand me because they have the exact same symptoms as me! I have just been racking my brain to find some test that will show the medical community that we have DD. Some test that can be done on people who think they may have DD, to help them get a diagnosis. I am game to try almost any test if I think it could help others get diagnosed because I had suffered for many, many years without any answers or diagnosis. For me, a diagnosis is a confirmation of the way I have been feeling for so long. It tells the medical community, "See, I haven't been lying, I really am sick". A diagnosis makes other Dr.s take you more seriously. A diagnosis also gives us a point to aim at as far as treatments, and what to expect in the future with our illness. With most tests I have had done I learned more about myself and just how different people with DD actually are from most "normal" people who don't have DD. I have even thought that we could possibly use infused lidocaine to see if a person has DD. Because if you have DD, lidocaine will have a much longer lasting effect on your pain. Far longer than on a person who doesn't have DD. So if it is thought a person may possibly have DD, we could give them some lidocaine and measure how long the pain relief lasts. If it is for a long time (like 3 days) then the person probably has DD. If the pain relief is for only hours to 1 day, the probably don't have DD. Do you think any Dr. has ever thought of this as a tool for diagnosing DD?

I hope you can have a lymph scan done. I requested a copy of the scan and the results sheet. It was interesting to see my legs with the collateral vessels in masses the whole length of my legs. It showed lymph glands, it showed my enlarged fatty liver very well and my kidneys. There were also what appeard to be lymph glands in clusters around the kidneys. I wonder if these clusters could have been lypomas? I am just so sad that they didn't mention anything about the tops of my feet. I really wanted to know if the swelling is lymph fluid or connective tissue, or bone. They sure hurt alot. Nothing was said.

I read up on some literature from Dr. Dercum himself. He mentioned that he had women with DD that had this same swelling on the tops of the feet. He called it myxedema and attributed it to a low thyroid. However, when he gave thyroid supplement to one of the women, she died. Yikes! I guess that was the end of him ever giving thyroid to treat the tops of the feet when the thyroid levels were still in the normal range. We must however remember that this was done over 100 years ago. Things have changed so much since then.

Celeste.

Good heavens Celeste!!! What a great test you had! This is important information for the DD community. In the end I think we will help ourselves before the doctors do. If we ask our doctors for a lymphoscintography test and they even know what it is..without looking it up on their computer...we will know we have a smart doctor. One more good thing about the lymphoscintography test..it can be an IQ test for doctors. You finally got some good information from a test! Yeah! Maybe you can send Dr Herbst a copy of the test results? I think she will be very interested. You go girl!!!!

The tops of my feet feel and look like they will burst. It is like skin on a grape. Right now my right foot which is always the worst one..is swollen so much on the top they look horrible. Mine also get red...the top of the foot and the lower leg..with a whiter area around my ankle. The skin gets shinny..very shinny like it is oiled up or something. My gout is also bad today and my big toe joint is hurting. I had to take my support socks off as they were bothering my big toe so my foot swelled horribly.

Thank you so much for this information. You should definitely try the lymphatic massage if you can find a good place. I did but could not afford the copay..it was horribly expensive. I use the wraps along with the special support hose I wrote about before. I can't stand regular Jobst. As a matter of fact that is one way DD is diagnosed. If they just touch our lymph glands near our ankles it hurts like heck. This does not happen in normal swollen feet in people without DD. Thanks so much for your wonderful post! Hugs, Grandma Sylvia

Sylvia,

I wonder if Dr. Herbst has ever used a lymphoscintography test on people with DD. The test I had was prescribed by a vascular specialist who is a lymph specialist. The test may not be used very often. I had never heard of it before. The reason the lymphoscintography was ordered is because the vascular specialist Dr. said she had never seen so many lumps on a person. I made her feel the lumps down my legs and across my ribs. She also palpated deep in my abdomin to find the lymph glands and then she felt my liver for enlargment. She didn't know anything about Dercum's and she wanted to learn more. Therefore, she ordered the scan to see if the lypomas were connected to the lymph system and would possibly show up on the scan. She also suspected that the lypomas could be pressing on the vessels and causing blockages. Well, I believe she was right about the pressing on the vessels, especially in my legs where the vessels had stopped working and had made the new vessels called "collateral" vessels. My body making the Collateral vessels is sort of like my body doing it's own bypass around the bad vessels. I think the test is a good one to help explain why we have such tired, heavy legs and walking, standing and carrying heavy objects make our legs hurt, and even swell up. The test would have been better if the lypomas would have shown up and been able to be counted, or atleast it could be used for diagnosing DD. That would have made my day! Darn, I guess I have to just keep looking for that test for DD!

Hope you all have a wonderful weekend! Celeste.

Hi Celeste, This is so interesting and I am going to look into getting this test. As you know I have been doing the Asyra (homeopatic) and the level we are in shows my lymph system and i am now taking meds to unblock it. when it lets stuff move my legs get light and the pain is almost gone, tops of my feet and ankles are normal, took almost a month to happen.Feels wonderful. The other thing is, i did blood work several weeks ago and the girl had a terrible time finding my vain, it was like it was gone where they usually take blood and had moved toward my elbow. Debbie Asyra lady lazered me a month ago to open my vessels because the test showed the vessels were very cloged. This month she had to do it againwhich she was shocked because people only need it 1 time.When the vessels are open the swelling in my ab goes down and again the pain is much less. This could be an important link for Dr. H and if i can get this test i would be glad to send the results to her. Thanks for the imfo. very best wishes,Wendy

Wendy,

It would be so interesting to have the lymphoscintography test before the lazer treatment started, the have it again a month or two so after the treatments and medications were started to see the improvement. You could still have it done now and then again after more improvement in a month or two.

I agree with you, it would be very beneficial for Dr. Herbst to know about your laser treatments. I wonder if she has looked at this laser for treatment?

I want to try that laser treatment. I need to find a place here in Minnesota that does it. Any suggestions?

Celeste.