UPDATE: NOT LYMPHEDEMA!!! ANTIBOTICS CURE LYMPHEDEMA.....

[tgebert137]

Just an update to the wonderful people who took the time to reply to my previous post, 3 weeks ago. I was sure antibiotics cured Lymphedema. So in trying to obtain a low dose antibiotic to take ongoing, I was RE-DIAGNOSED with a mild circulatory problem. A fill-in for my regular GP refused to prescribe the antibiotic without seeing a specialist.. so after a long waiting period and finding the right kind of specialist which was a vascular surgeon...... and WALLA..... YOU DON'T have Lymphedema..... Never Did..... He was 99.9% sure... So, for four plus years later and thousands of dollars in medical expenses. I was MISDIAGNOSED by several so called Lymphedema Specialists. Good News, yes... but it angers me to think I spent 4 years treating something I did not have and am now going to have the scars that come from years of swelling and infection. I never had any surgery to cause the Lymphedema and could never find out on what basis they could diagnose it as such...... So if there is anyone out there with the same background, check out circulatory problems in the lower extremities. ......YOU MAY NOT HAVE LYMPHEDEMA AT ALL!!!!

[CCT67]

I'm sorry to ask this as you sound pleased with the recent diagnosis, on what basis and criteria did the recent specialist assess a different diagnosis from Lymphoedema? I'm afraid it does not sound convincing to me.

You comment that you 'didn't have surgery to cause Lymphoedema and could never find out on what basis they could diagnosis as such'. Are you aware that Lymphoedema is not necessarily caused by surgery/trauma? Only secondary LE results from trauma. It's possible you have Primary LE which is not the result of surgery. How does the recent specialist account for your past swelling and infection, and how will a different diagnosis prevent the same symptoms from reoccurring in the future? Although you're cross about spending money on LE treatment (assuming you meant MLD therapy?) no amount of MLD would be harmful to your body. The Lymphatics are the largest part of human circulatory system; your new diagnosis still relates to an impaired circulatory system therefore LE treatment over the years may very well have been helpful to your body.

I do hope you have no more infections going forward but you never know... Fingers crossed you don't.

I have been the patient of my Vascular Surgeon for the past 2 1/2 years and had the reverse scenario to yourself. He first diagnosed a vascular problem and then after he operated on me in 2015 to cure his original diagnosis, he said after the op that had been wrong - he then re- diagnosed me with Lymphoedema which was confirmed by a Lymphoscintigram. Have you had one of those scans? It is the gold standard scan to diagnose LE. It's important to remember that medicine is not factual or hard science. Diagnoses are often only educated guesses that doctors are making and they get it wrong. If you were diagnosed with LE years ago did they have you undergo a Lymphoscintigram to make their diagnosis? If not, perhaps it would be a good idea, as it would defininitively indicate whether you have impaired or normal functioning Lymphatics.

Good luck to you.

[pollyslymph in reply to CCT67]

tgbert.....well....yes....congratulations on the one hand, but it seems the advice given is on target about the lymphoscintigram etc. thanks for keeping us all posted.

[veriterc]

Can sympathise with you - over in UK our so-called 'free' NHS has taken me down the Lymphoedea path. I read US official websites, and now find that ASCO say swelling may be caused by long term side effects of drugs we were given. Feel I need a good Witch Doctor! Their opinion would at least be entertaining!

[CCT67 in reply to veriterc]

I'm a bit confused by your comment 'free' NHS. What about the NHS is free? We pay for it. At least those of us who are employed pay NI tax every month.

As for doctors getting your diagnosis wrong, it's very unfortunate.too many people expect doctors to be all knowing, omniscient when they plainly are not. They get diagnoses right and they get them wrong, regardless of country or continent.

It's very unfortunate that you are suffering the consequences of a mis-diagnosis and you're rightfully frustrated!

[veriterc in reply to CCT67]

When I said the NHS was 'free'- I put it in quotation marks because so many people say it's free, when it's not. Whenever people talk this way, i wonder why they don't face reality. It also infuriates me the way supplies and drugs are wasted, because it is assumed they don't cost anything! Re doctors: I don't expect them to know everything, but do expect those working in a cancer hospital to have knowledge of cancer-related problems. But am not impressed with those who don;t know answers, won't find out, but sneer at us when we ask about treatment that is clinically-trialled in other countries!

[JenH1942]

Great news. Stay well and start to enjoy life.

[Fatleg1]

Omg what did you do how did you figure it out

I think that may be what is happening to me.

My legs now one leg has been swollen for over 2 years. And I have gotten so many different answers I feel like they are just dying lymphedema. Excuse they can't figure it out

Can you please give me more background on what your systems were and if you are better now what antibiocti ...

Thank you so very much