Help, possible lymphoedema

[y-gwair]

Hello, I am experiencing a lot of strange symptoms which I'm beginning to suspect could be some form of lymphoedema.

Problems started a few months back with problems in my eyes. I have very dry eyes, which suddenly became a lot worse so I saw a ophthalmologist. Despite all the usual treatments, my eye discomfort continued to worsen, and my eyelids became increasingly puffy, and filled with fluid. The ophthalmologist has no idea what's going on, she has never seen anything like this, and the swelling/pain hasn't responded to steroids. Initially it was just while lying down at night, but the lids are staying filled with fluid during the day as well.

Over the last month my face has started swelling as well, leaking fluid when I lie down, as well as being very sore and painful. I saw my GP who just thought it was a food allergy and put me on antihistamenes which did nothing. It became so bad I paid to see a dermatologist last week who thought I might have rosaceaous lymphoedema, which I've never heard of before.

At the same time as the eye swelling started, I started feeling generally very unwell, with lots of chills and feverish night sweats. My feet have had pins and needles, and my leg aches and feels heavy. I've had lots of burning pains in the muscles of my shoulders and neck. Also terrible diarrhoea and very sore mouth/white tongue that isn't thrush or infection, streaming sinus drainage and a really sore, dry feeling throat. I also had a really odd sensation of not being able to breathe properly at night while lying down, really frightening shallow breath. My abdomen feels a bit swollen, my trousers are tight even though I've had such bad diarrhoea and no appetite.

As I have a diagnosis of undifferentiated tissues disease, I saw my rheumatologist last week, described all of these odd symptoms. She wasn't very interested, she didn't think it was rheumatological but told me to increase my dose of hydroxycholoquine (which I've been taking for a year because of sudden onset of muscle/joint aches 18 months ago, plus onset of eye/mouth discomfort which they thought might be Sjogren's). Having just found a page describing warning symptoms of lymphoedema, I am worried all the odd unrelated symptoms might be related to this. The only time I've ever had anything like this facial swelling/leaking lymph in the past was when I had glandular fever years ago, my face swelled up and started leaking lymph fluid when the glandular swellings were at their worst.

How do I seek help for this?

[patoco]

Hi Gwair

Super welcome to our family and I am so glad that you found us. Hopefully, we can provice some answers that may help a bit.

You must be a pretty sharp person to find out about and investigate lymphedema. There actually is such an entity as facial lymphedema and it can effect the eye lids, over-all face and neck. I agree that this does indeed sound like it might possibly be lymphedema.

Sounds like to me as well that you have had this thoroughly investigated and can rule out rheumatology, allergy etc.

At this point, it would be quite important for you to have an extensive examination by a lymphedema therapist. It is also essential that you be able to do this right away, so that if it is LE, you can get going ASAP on management and treatment..

A certified lymphedema therapist is a medical professional who is specifically trained and licensed to treat the condition and they would best know what to do for you. These pages can help you on that.

Lighthouse List - very extensive list for the Southeast

http://lighthouselymphedema.org/certifi ... States.htm

National Lymphedema Network List - provdes excellent info about types of treatment, providers etc. There are several pages.

http://www.lymphnet.org/resourceGuide/c ... rapist.htm

Dr. Vodder School Int. (trains and certifies therapists using the Vodder method (my most recommended)

http://www.vodderschool.com/find_a_therapist

American Academy of Lymphatic Studies - another school

http://acols.com/FindaTherapist.aspx

Norton School of Lymphatic Studies - another school. Their medical director, Dr. Cheville is quite well known for her LE knowledge.

http://www.nortonschool.com/therapistre ... _form.html

Klose Training and Consulting

http://www.klosetraining.com/TherapistDirectory.asp

Coast to Coast School of Lymphedema Mgt.

General Information: Information@lymphedemamanagement.com

We also have this info page:

http://www.lymphedemapeople.com/thesite ... herapy.htm

I won't overwhelm you with more at the moment. Please jot down any questions and never hesitate to make a post, ask a question, express concerns - or even if you just have to vent LOL, we do that too!

Pat

[y-gwair]

Thanks for all of that. I've found some contact details for a Lymphoedema specialist - Professor Peter Mortimer. I'm in the Uk and he seems to be just about the only person who specialises in the condition, perhaps he can help throw light on this if I can get referral. I only picked up on it because of what the dermatologist said about Rosaceous Lymphoedema; I'd never heard of it before, googled it and found the excellent information on your forum.

Can LE be a symptom of autoimmune disease (it can also be a rare manifestation of lupus, from what I can gather)? I do have rheumatological markers for connective tissue disease (ANAs, elevated IgG and polyclonal hypergammaglobulinemia), so there's definitely some current autoimmune activity going on. I don't know if there is a difference between lymphoedema and 'ordinary' oedema?

[patoco]

You certainly can't get any better then Dr. Mortimer. He is quite well known and respected throughout the world for his lymphedema. I hope you can actually get in to see him soon.

Here is a page on that:

Lymphedema and Autoimmune Diseases

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

There is nothing (no clinical studies, evidence) that LE is caused by autoimmune disease. Although, it is quite interesting that many, many of us (myself included) shows blood work indicative of an autoimmune process occurring. This is an are that begs for more research. Remember too, that the lymph system is a major part of our immune system that may explain the interplay.

This page will give you a brief idea on edema versus lymphedema:

http://www.lymphedemapeople.com/wiki/doku.php?id=edema

Pat

[y-gwair]

There is nothing (no clinical studies, evidence) that LE is caused by autoimmune disease. Although, it is quite interesting that many, many of us (myself included) shows blood work indicative of an autoimmune process occurring. This is an are that begs for more research. Remember too, that the lymph system is a major part of our immune system that may explain the interplay.

Thanks for that information, very interesting. Really not enough research in areas where autoimmune activity occurs outside of the usual rheumatological conditions at all; maybe as B-cell depletion therapies are increasingly used for a widening range of autoimmune and lymphatic conditions, the mechanisms may become clearer.

[Shusha]

I am 70 years old and have had lupus since I was sixteen. I was diagnosed with SLE when I was 21 years old.

I had a rare manifestation of lupus (SLE), distinct red malar rash across both cheeks and nose and extreme, gross swelling of my full face, so that my pores were as big as pin heads that were leaking fluid.
The Dr who treated me was Mr Reay-Young Senior Medical Officer (Army) at Woomera in South Australia in 1961. He was the Head Surgeon, and Head of the Woomera Army Hospital.
He had been a prisoner of war in the tropics, and had seen this manifestation of lupus before, so he treated me very quickly with Nivaquine, put me to sleep with an anti allergy medication, covered my face with calamine lotion and kept in a dark room for 10 days. After this, all my skin fell off my face and left me with beautiful skin like a baby.
What has happened now is I have struck an Immunologist who doesn't recognise this manifestation, and because my titre is low, although speckled blood, is questioning this diagnosis. I am wondering if you could ask around and see if anyone has ever come across this manifestation of SLE before, or whether you have seen it in any literature on your travels.
This would be of much help to me,
Shusha

[patoco]

Hey Shusha

I'll be totally honest with you..lymphedema is my specialty and I know little about lupus. But I will check around.

What other type of doctor have you been too or had check this out?

Pat

[Shusha]

Hi Pat,
No-one has ever investigated this first episode that I had.
I have had other malar rashes and been very ill with lupus all my life.
I am intolerant to most medications and suffer severe diarrhoea from drugs.
I do not go to a Rheumatologist but have been cared for by very good GP's throughout my life.
This causes much controversy with other Drs., and in Hospitals.
Hope you can find something out for me.
Regards Shusha

[patoco]

There is one thing I absolutely miss about the medical profession.

Once upon a time - and it wasn't terribly long ago, if a patient showed up with a bunch of conditions that was out of the ordinary, the doctors really took an interest. They would work their backside off to find answers, solutions and treatment.

What ever in the world caused them to loose this?

Shusha, it is bad enough having hereditary lymphedema. You should have seen these doctors when I show up with secondary lymphoma. LOL....you would have thought I was from another planet or galaxy.

I literally want to tear my hair out when I hear of patients like you and how you have just been totally ignored. There has got to be something terribly wrong with your immune system to have all this happening. It may take time, but I promise you I'll try to find something.

Big hug to Ya!

Pat

[Shusha]

Hi Pat,Big hug to you too.
My 54 year SLE History reads like an 80 page novel.
I am a survivor!
I am very grateful that I don't suffer from any form of depression.
It looks like I am going to be put through the grinder with this Immunologist, in regard to intolerances to sulphidamine drugs and sulfites in food.
Very rare to have both intolerances at the same time. Have had them since I was 17 years old.
But first of all I have to get through this barrier I have with the Immunologist regarding my first malar rash with extreme gross facial odema. He stated to me that it was NOT SLE malar rash symptoms - but I was there and experienced this first hand, and lucky to have a brilliant Doctor who had seen it before, in the tropics. I was treated within a half an hour after my face started to swell up. There was no pain. I was sitting in the sun when it happened.
I had not had any drugs or insects stings or any seafood - couldn't get seafood in the desert at Woomera. The malar rash was distictive.
I would appreciate anyones help on this.
Regards Shusha

[Shusha]

Hi Pat,
I found this in your site http://www.lymphedemapeople.com/thesite ... ipelas.htm
Please note:
A number of clinical entities can present with similar lesions: ... malar rash of systemic lupus erythematous.

"Diagnosis: ERYSIPELAS
Discussion:
Erysipelas, earlier named St Anthony's fire, is an acute superficial cellulitis characterized by a sharply demarcated advancing border surrounding raised, deeply erythematous, indurated painful skin involving the dermis, lymphatic, and superficial subcutaneous tissue. It is usually associate with a portal of entry. A number of clinical entities can present with similar lesions: the "slapped cheek" of erythema infectiosum (fifth disease), early herpes zoster involving the second division of the fifth cranial nerve before the vesicular eruption, contact dermatitis, insect bites, furunculosis, sialadenitis, impetigo, malar rash of systemic lupus erythematous, photodermatis, rosacia, Melkersson - Rosenthal syndrome, Sweet's syndrome, dermatomyositis and relapsing polychondritis.,"

I presented with the following symptoms:
No fever, fatigue, vomiting or chills.
After sitting in the sun for 20 minutes, my face swelled up to the size of a football with the pores as big as pin heads, leaking clear fluid.
My face felt tight, but I was unaware what had happened until my girlfriend pointed it out to me.
I had a distinctive malar rash across both cheeks and nose.
I had no blisters around my eyes or on my face at this time.
I presented at the Hospital within 8 minutes of this.
Dr Reay -Young diagnosed SLE.
No photos of erysipelas come near to what I looked like.
Interesting Hey!
Regards Shusha

[patoco]

Wow...sure is.

I have actually had erysipelas before too. I just don't think what you have shows any resemblance to any type of infection.

But, do yhou always have this type of reaction to sitting in the sun?

I also did send you info on doctors and how to find a therapists via email.

If you didn't received it, let me know.

Thankx

Pat

[Shusha]

Hi Pat,
No I only had this gross facial reaction once.
Personally, I don't think it was erysipelas, but a gross malar episode associated with lupus, and this it may be very rare.
The problem I have is with the Immunologist who is treating me at present. He is telling me it must be an infection.
I did have an episode with my foot in 1958, after a cortisone injection. My foot swelled up to the size of a football and went black - nearly lost my foot. He is telling me that this was an infection as well, and not an allergy to cortisone injection, like the Doctors told me at the time. I would like to get to the bottom of this and I am doing many allergy tests at present to see if I am able to tolerate different drugs.
In regard to malar rashes; I have the malar rash when I have SLE, but not in remission.
No I did not receive an email from you.
I live in Sydney Australia.
Regards Verna
PS. Not to complicate things too much, I have had a severe episode with Bactrim (Sulphur side) - very severe - nearly died.

[patoco]

Good Morning again

The best place to check on therapists in Australia would probably be the Lymphedema Association of Australia
try this page, great organization BTW:

http://lymphoedema.org.au/index.html

It must be incredibly frustrating dealing with the immunologist. I have actually begun to think though, that lymphedema does affect the immune system or that people with LE already have a bad one. There just are way way to many of us with this problem for there not to be any connection.

Unfortunately there is no study done on this.

Sorry to hear about your reaction to Bactrim, it has really worked well for me. But, there are are great many other antibiotics available, so you should be able to get on one...of course if the doctor will prescribe it. LOL...if he doesn't tell him to go out and get cellulitis and see how much fun it is.

Pat