Lymphedema People ™

Hello I am new to Lymphedema and I am living in Denver. Can anyone help me find a doctor in the Denver area. I have looked on the list of providers and have not found one in Denver.

I am a 33 year old female. I am very active. I run, swim, Mt Bike, hike anything outdoors. I compete in triathlons, I am active... so when I woke up on December 6th 2009 with a very swollen ankle I thought it was an insect bite. BUT... it never went away:(

Over a year later I am still living with a swollen ankle, calf, thigh and lymph nodes in my left groin.

I have been tested for EVERYTHING and noone can give me a definitive answer with what is wrong. Some doctors "think" I have lymphedema but then others have said no it isn't...but they don't know what I have!

The level of my swelling in my leg varies. It is NEVER consistent. It fluctuates which I guess is good because it doesn't stay huge forever, but I dont understand what makes it worse.

These are all the things that doctors over the past year have considered me having...: Lyme disease, DVT, Gout, rickettsia, cat scratch, saphenous vein with reflux. I had a lyphoscintigraph which showed negative results. I was sent to Rheumatology and was advised to go to Phsyical Therapy, for Lymph massage. (which didnt do anything for me). I don't have any of these.

I am so sorry for anyone who has to live with the not knowing part of Lymphedema. That is the hardest part for me. Not knowing if I have Lymphedema. At least then I could start being content and realize I have to live with it.

I now have numbness in my last two toes on my left foot, it comes and goes. It is MUCH worse when I am riding my bike and painful and really hot feeling.
I have painful swelling in my leg and sometimes it hurts more when it isn't swollen than when it is. All very inconsistent.

If anyone has had any luck finding a good doctor in Denver I would really appreciate it.

Thanks so much! All the best.

Rachel

Hi Rachel

Super welcome to our family here

Your story sounds, sadly, all too familiar with most with lymphedema. getting an accurate diagnosis can be a nightmare, not to mention finally being able to get proper treatment.

The fluctuations in your legs/ankle are also much like very early stage lymphedema. Generally, in the earlier stages it does fluctuate - sometimes dramatically. Some have even reported hat the swelling actually goes away, only to come right back.

But, there is one symptom that is not common to lymphedema and that is the swollen lymph nodes. Enlarged nodes (lymphadenopathy - see http://www.lymphedemapeople.com/thesite ... opathy.htm) is generally indicative of an underlying medical condition.

If not resolved - it can turn into lymphedema, but it may not have reached that state.

I was curious as to what the clinic said that you went to and if you had swollen nodes, why did they do the massage treatment. That is also contraindicated for lymphatic massage treatment. Also, were they certified (trained and licensed by a recognized school of lymphedema therapy? Bore they started the treatment, did they give you a complete physical evaluation?

The good thing about the lymphoscintigraphy test is that it can identify blockages in the lymph system. It's weakness though is that it can no measure the actual amount of lymph glow. This means, you could have an incredibly slow impaired lymph flow while not having an actual blockage. They do now have "real-time" lymph radiology tests now, but they are still very rare and the places that do them are very very fe and far between.

Generally, if all other tests have proven negative (CHF, DVT, etc) then it is accepted the condition is lymphedema.

Unfortunately, I do not know of a doctor in Denver that can help. There is a small list of doctors on our Registry of Lymphedema Doctors -

viewtopic.php?f=25&t=5

What I would do, if i were you is:

(1) Double check that lymphedema clinic you went to for proper credentials and training.

(2) Make sure they at least tried to determine "why" you have those swollen nodes. This is critical.

(3) If you haven't enlisted the help of an infectious disease doctor, I would. You don't want any hidden viral or bacterial disease lurking around.

This page gives a full description of their specialty training and service:

http://www.lymphedemapeople.com/wiki/do ... ase_doctor

(4) This is not meant toscare you, but it is also critical that they rule out any hidden lymphatic or hemotolgoical cancer (non-Hodgkins Lymphoma, Hodgkins Lymphoma etc). Have they ever given you your complete white cell count or done anything like a lymphocycte sub-set panel?

(5) If they get to a point where they insist a biopsy of a node is necessary, please, please do not allow them to go in and simply yank out a node. If what you are experiencing is early lymphedema or even if you are at risk for it, removing a node would/could be disasterous. That could in and of itself trigger full blown lymphedema.

When I had swollen nodes in my right inguinal area - with a history already of lymphoma, we needed to do a biopsy on one of the nodes. What they did is called a small needle biopsy (fine needle aspirate).

This page goes into that:

Small Needle Biopsy

http://www.lymphedemapeople.com/wiki/do ... dle_biopsy

The small needle biopsy has been improved to the point where it is a very valuable tool and can provide accurate diganosis.
Since they did that on me, it has not in anyway caused a worsening of the lymphedema in my right leg.

All this, I know sounds daunting, but it really is necessary to cover all bases and make sure an accurate diagnosis is achieved.
I check the forums every day, so if I can answer any more questons, be of encouragment - anything - don't hesitate to post.

My very best to you!

Pat

Dear Pat,

THANKS so so much for your reply, and your warm welcome.

I sincerely feel as though I have been tested for everything under the sun. Up until December 09 I was with Kaiser Permanent, and was limited on who I could see. I indeed have been seen by every Kaiser Specialist it seems in Denver.! ( I have since changed healthy insurance to United Health Care).

I have indeed been given a thorough going over by the infectious disease doctor. He concluded that since he couldn't find anything abnormal in my test results, he would send me back to a vein specialist...and I got passed around from there. I was cleared of all the hidden lymphatic or hemotolgoical cancers. I have had a number of complete white cell counts and they all come back perfectly normal. I will have to check on the lymphocycte sub-set panel, not sure if I have had this...but my preivious doctor said she ruled out everything cancer related. AND this is when all the doctors stopped really searching... because they ruled out the BIG stuff. They then announced they would just "wait" until I got worse and then see what to do.

I have had a few doctors discourage me from getting a biopsy of a lymph node. The reason they gave me was that when choosing a node to biopsy, there is so many in that area that it is hard to choose "which ONE" to biopsy. What if they choose the wrong one... But it sounds like you got results from your biopsy?

Am I right in hearing you that it ISN'T common for people with Lymphedema to have swollen inguinal lymph nodes? They do not "GO" together? I thought it was because of my Lymph nodes swelling that my ankle/leg swelled?

I am going to a lymphedema clinic tomorrow and have checked it's credentials and feel much more comfortable knowing these people know more than the Kaiser people I have seen before.

I am going to look into getting a biopsy, thanks so much for your encouragement.

It concerns me when I hear you say things like... " the symptoms I am having are the "beginning stages".... I hate to see the full blown effects! I think that is why I am searching for "something" that might be able to be done NOW before it gets worse... but perhaps that is what everyone is searching for

Thanks again for your encouragement, and your quick response.

I will be in touch and I wish you all the best on your journey with Lymphedema also.

Thanks again.

Rachel

Hi There Rachel

Wow...you really have been through the mill.

Yes, you heard correct that lymphedema and swollen noes are not common or tied together. This is what is really concerning me. Lymphedema is the result of a damaged lymphatic system itself while swollen nodes usually indicates some type of virus/nacteria condition.

I'll be interesting to hear what the lymphedema clinic says. The other thing that concerns me is that whatever it is that is causing your nodes to swell have now also damaged the lymph system. The clinic through an evaluation can give you a better idea on that.

Look forward to hearing from you.

Pat