No Lymphedema After All

[GabbiD44]

I am in the Midwest of the US. Dx with primary Lymphedema in 2017. My primary care doc was retiring so she finally referred me to Mayo (they are the experts in many things) before she left, to get some feedback on what I considered my "hard to control, left leg, lymphedema." I went on Tuesday. I am still not over my shock. Both the doctor and the PT said I don't have lymphedema. "Maybe "slightly" in my left leg but not at all in my right leg."

The doctor said he definitely thinks I have lipedema, which can cause swelling. (as much as I have?) But not lymphedema. He said if I had primary lymphedema my skin would be thicker, especially between my toes. In his clinical opinion, I don't have it because of my "negative Stemmer sign" and no previous cellulitis.

He said the swelling may have seemed worse during my falls (I fell 7 times in 2019, and then once a year in '20, '21, & '22) and bc I gained weight (20 lbs in theblast 2 years) but overall he doesnt think MLD or pump are doing any benefit to my swelling.

The only thing thinks I am doing that actually has a clinical benefit is compression socks. The PT agreed.

They would rather have me take a walk than do MLD or pump if I am debating between the two. I would get better circulation from actual exercise.

Also, the PT didn't care for the Tactile pump for lipedema. She said there is virtually no benefit. Maybe if I was 80 and couldn't do compression, otherwise its just for the sensation while doing it. No other real benefit.

They told me to.lose weight- but didn't give me a special diet and basically told me I will have a hard time losing weight. And they told me to exercise, but said they knew it was hard because of my bad knee.

I came home and just cried. I should be happy. But I had pretty high hopes for the appt, that I would finally het real dorection. Its like they told me everything I was doing to be proactive was just a silly waste of time.

Could I really have been mis diagnosed? I agree I have lipedema. My legs are symmetrically big. The left is slightly bigger. But my feet do swell and

I know I had pitting when I was dx in 2017. If I don't have it now, why is my knee so swollen I can barely bend it? Also I thought lipedema and lymphedema caused muscle weakness? I was hoping for some answers on my falls that always happen with me landing in the splits, hyper extending my most affected leg.

Any advice or suggestions are very welcome. Thanks!

[Chocolate-e-clare]

Hi Gabbi! Your best friend, if you can do it, is exercise - both land based (to improve balance) and water based (to ease joint pain while you move). Don’t be sad about not having lymphedema. It sounds like you have mild swelling - so compression will help that. Pumps are useful for those who cannot wear compression or exercise. Re diet - high protein, low carbohydrate is popular for weight loss and trying to stop the gain. Every health practitioner will have different advice - do what works for you!❤️😀👍

[GabbiD44 in reply to Chocolate-e-clare]

Ha. That is exactly what they said about the pump. I have upped my exercise. And if it helps with balance that would be great. I have fallen so many times since 2019!

[Chocolate-e-clare in reply to GabbiD44]

For falls prevention you need to address reasons for falling (ex balance issues; environmental factors; footwear etc). Find s PT who specialises in exercises for falls prevention/balance training. Good luck!😀👍

[Rexygirl1957]

Lymphedema can present in so many ways for different people. It can also coexist with lipedema. The only definitive diagnosis can be made by ICG lymphography or lymphoscintigraphy. I have had lymphedema for over 30 years and have no skin thickening at all. Chocolate-e-Clare’s advice is helpful . Give up processed foods and folllow an anti inflammatory diet . I gave up gluten and dairy and have seen improvement.

[GabbiD44 in reply to Rexygirl1957]

Yes. He said we could do the trst but it wouldn't change his treatment advice. Thanks for your helpful response!

[hshank]

Can you get a Lymphoscintigraphy to confirm if you have lymphedema or not?

[GabbiD44 in reply to hshank]

He offered but said he wouldn't change his recommendation. I could always request it. I am trying to be more intentional with diet and exercise and see if that helps!

[hshank in reply to GabbiD44]

My son has primary lymphedema in his right leg. We went to different doctors for a year who ruled out veinous problems but did not say that it was definitely lymphedema. We landed up seeing Dr Emily Iker ( lymphedemacenter.com/ ) , and she ordered a lymphoscintigraphy right away to confirm her dianosis that it was lymphedema and then sent him to a surgeon who did a bypass surgery. She also treates lipedema but never mentioned it as a possibility for my son - dont know why. The surgery reduced the swelling in his foot and ankles by a lot and he could wear shoes again. Diet makes a difference - low fat, sugar, salt, dairy products. There is a book on diet that may help amazon.com/Lymphedema-Liped...

[GabbiD44 in reply to hshank]

Thank you! I will get the book! The doctor offered the lymphoscintigraphy but he said it wouldn't change his advice. Sonit kind of dissuaded me from doing it.

[Morzine]

hi Gabbi,

Same here! I was diagnosed lymphodema in January….and have had lymph massages twice a week for three months, no benefit….I saw a consultant in august and she said no, it’s lipodeme…..I was pleased my lymph glands aren’t a problem but just like you I’m not really anywhere better off I still have my fat bottom of leg, one is more than the other…..she did say low fat diet, no processed I’m doung that now…and she gave me a prescription to see a podiatrist to get my feet mounded and thrn inner soles created to put in shoes as I seem to get off balance, I had no idea this was the reason.

I am on holiday so will get that done when I’m bavk home in France.

I’m on weight watchers now too since five weeks and finding it easy…well so far….!!! But on holiday I am actually looking forward to going out tonight to eat and will have chips!….but generally I’m beung good….

The angio consultant said compression tights but they are impossible to get over my swollen bit at bottom of leg…I’ve tried .

Otherwise I’m not sure much can be done, liposuction I guess but it’s not covered by the frenvh health system as it’s seen as cosmetic…

Excersise is good, and I walk every morning ….and she saud keep feet up….

Well that’s all I know,I can’t find out much except I know now why losing weight has been so hard.

Best wishes

Sue

[Loramay in reply to Morzine]

Hi sue if you can't get tights over your leg have you considered easy wrap I have them they wrap over each other so no need to pull them over anything they were a game changer for me

[GabbiD44 in reply to Morzine]

Thanks for sharing your experience. I think traditional wrapping (when you are home from holiday) might help bring your leg down and then its easier to put on compression. Good luck, and great job on Weight Watchers!

[GabbiD44 in reply to Morzine]

Here is my favorite YouTube PT. She shares a video on wrapping. youtu.be/nXLqHXyrVBI?si=aed...(Not working as expected?)

[WardijaWardija]

I too was mis-diagnosed as having Lymphodema for the past 4 years.Of course, I was relieved but I'm also very angry . .

I do have a post up on this.

[GabbiD44]

I will look it up!!