Question for Pat or anyone else who can advise me Please!

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Question for Pat or anyone else who can advise me Please!

Postby chrissybabe1996 » Fri Nov 03, 2006 10:12 pm

[b]HI Pat,
I am new to this site and wow I am so glad I found it!
I am 26 yrs old, & have been suffering from soft lumps behind my calves since I was 19. It started in my rt leg just behind the knee & they are very sore. For the past 6 months they have been in both my legs & they will appear & dissapear. They are very very sore. About 1 month ago my calves & fett swelled, not enormously but extreemly swollen went to the er & they couldnt figure it out, go figure! My Dr. thought it could be phlebitis as of 6 months ago, I also have been for many venous dopplers to see if it is clots but its not.She now as of this past monday feels it could be Lymphedema.
The thing is is these lumps come & go, where they could last a few days weeks, but then go away to only come back in the same time frame as I just mentioned. They are mainly in my calves behind the knee and some smaller lumps in my lwr calves, now they have moved to my thighs, mainly lft one.I havent found any info where it staes lumps are present as one of the symptoms. Do you know if that is a symptom of this?
Any info would help! Thanks!
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Postby silkie » Sat Nov 04, 2006 12:31 am

Hiya Chrissy

I am sorry Pat is at the NLN conference so hes only getting on a pc
now and again Should be back soon

So i dont know if i am going to be much help

I do have lumps. i have primary lymphedema and lipedema

Lots friends mention lumps from the size of a pea to a fist with lip

and i do know lympher that get lumps to.

it is the coming and going im not so sure about

let me do a little researching and i will get back tyo you a.s.a.p or if Pat gets chanceto get on a pc i will mail him and see what he says

Be back to you soon as i can

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Postby chrissybabe1996 » Sat Nov 04, 2006 12:48 am

Hi, Thanks so much for replying. It feels like a never ending mystery with what is going on in my legs, i also get swelled in my arms now & then just recently, but no lumps and ofcourse 1 side is always more swollen with whatever then the other! It hurts bad though, it feels like something is constantly pinching my legs real hard, then when i touch the lumps they are very sore.
I need to see a specialist but I am not sure what type of Dr to look up for it, any idea what their exact medical name is for the dr's?
Also would you know of any specialist in NJ?

Thanks so much for responding, it gives me a lil more peace of mind with this, as I am starting to believe my dr I acctually have this.

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Postby silkie » Sat Nov 04, 2006 1:35 am

Hi Chrissy

A lymphedema specialist, vascular ,dermatoligist even

The one i have heard of my reputation is Dr Francis

great things check out the doctors listed here in the information

for the nearest to you. but i pretty sure she is NY orNJ

I am in the UK so I can only go on the reputation from other lymphers and Dr Francis is mentioned with such respect and having been so good

Pat is with her now at the conference for lymphedema

Don't worry Pat is amazing and we will help all we can

I found talking to others the best medicine i could have

I am unable to work and i was a workaholic changed my life totally

but if i can sound crazy there is a good side to lymph

you find a new you. You have to change and adapt things you cant do
but the new things you never dreamed you have the time for or be capable of

I love the forums It helps me feel less of a victim of this condition
It helps me get some good from having lymph and the workaholic in me loves having something to do

the forums have also taught me so much
Pat more than anyone has helped me
Not only with my condition but in opening up a whole new world
of educating myself learning all i can encouraging me

I think i'm probably one of the only people in the UK that has some understanding of medicare US social security, legislation even

and i only came in to find out how to look after my lymph just shows you
even a lymph cloud can have a Silver lining you just have to look at things in a new and different way

No im going to see if i can find info for you


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Postby chrissybabe1996 » Sat Nov 04, 2006 2:15 am

Hi, Wow Im so glad that youre here to help me!
I am at my wits end with not knowing exactly what this is. I need a diagnosis ASAP! Does it sound to you like I have it? MEaning do I have classic symptoms of it?
Is it really that debilitating? Will I not be able to work? Im sorry if I misunderstood you but from what I gather youre not working due to this debilitating you, if so are people able to get disability?
I have been out of work for almost a yr, due to too many health issues which have been brought on from 1 syndrome i have had since 17 Poly-cystic ovarian syndrome with Insulin resisitance, it has caused a whole shmeal of health issues for me! I did start working as a teacher oro 1 week as I have been out since September 20th due to swollen tonsils, adenoids and my stomach/legs. My Dr. wont release me back to work until I am well again.
I useto for 9yrs work as a medical biller/coder, which was alot of sitting, but i feel that may make this condition in my legs worse?

Do you know if this can cause your white blood cell count to be elevated? For yrs. everytime i go for blood work i have elevation in my white blood cells, too weird & they dont know why!!!

I need as much infor on this as I can, I have been researching since this afternoon, with small breaks!!! Im tired but I am not going to stop researching until i get more insight on this.

Also can this cause problems when I do have children? If you dont know thats ok i just figured i would ask!
I really appreciate all of your help! Well I am sure with your help & pats help I will be on the right path! I am going to call Dr. Frances on Monday to schedule an appt. Hopefully she participates in my insurance.

Thanks so much for all of your help, advice and kind words. Please any info you have send it my way!!

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Postby silkie » Sat Nov 04, 2006 4:30 am

Hi Chrissy

NO it diesnt mean dissability like me

i unfortunately went for 40 years undiagnosed

it has effected my mobility i do not work because it is best for me

i can do many things but i suppose you would say i do things in spurts

i do something need to rest do something need to rest thats why i am also up during the night i sleep very little2 hours then awake etc

If i could find work to do at home i would because then i could fit it in with

my good times during the night and day

in this day and age of PC and technology there are very few jobs at home

There are many lymphers could actually benefit from working at home
and the job they do could be done from a pc but very few companies do it

I have 3 children all lymphedema free at present 7 grandchildren
and a gtreat grand son

the lymph didnt interfere with my family

I dont know about blood counts,

Pat will though also can i suggest taking a break what there is to know about
lymphedema and the lymphatics well im still a babe in arms when it comes to learning and i have been doing since 2002 every day
i research a lot of info to

Go and rest let what you have learn sink in Then start fresh again

it can get overwhelming when taken in huge doses

Night Chrissy sweet dreams

Silkie xxxxxxxxxxxxxxxxxxx
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Postby Lynora » Sun Nov 05, 2006 9:05 am

Hi Chrissy
Have a look at ... p?state=NJ to see if there is a trained lymphoedema therapist near you - if there is, he/she may be able to direct you to a physician who is au fait with things lymphatic - many doctors are not!!! :evil: Also, these therapists would be able to give you guidance on what you can do for self-help and pain control. :)

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elevated white count

Postby suzeeq » Wed Nov 08, 2006 4:23 pm

Hi Chrissy, I was reading your post and you were asking about an elevated white count. Of course, you should ask your doctor, but I can tell you my experience. I first noticed swelling 4 years ago, in my left ankle. I had numerous blood tests, they were checking for everything. But my white count was fine, as was all my blood work. I had a minor surgical procedure in Mar. of 2005 and again my white count was fine. An elevated white count is usually indicative of an infection, but there could be other reasons. But I'm not a doctor.
As for being on disability, I am still working. I think if you catch lymphedema early, and are very compliant with treatment, then you should be able to lead a fairly normal life. It definitely changes your life - it is just a balance of doing what you can do, but don't overdo. Each person is different and what I can do, maybe another person can't. I wear compression hose every day, bandage at night, exercise every day, watch my diet, do the manual lymph drainage, skin care etc. I work 12 hour shifts - night shift - and I am more swollen when I get home. But I can usually get the swelling back down.
Good luck to you and I hope you get a specific diagnosis and answers to your questions. Susan
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Postby patoco » Fri Nov 10, 2006 1:51 am

Hi Chrissy :)

Super welcome to our family and I apologize for taking so long to respond. I was out of town last week and am still playing serious "catch-up."

It really would be good for you to see a doctor who knows lymphedema. In New Jersey, you can't get any better then Dr. Francis. We have quite a number who go to her and are very very happy.

Here's her info:

Kathleen Francis, MD, Medical Director
Lymphedema Physician Services
St. Barnabas Ambulatory Care Center
200 South Orange Avenue
Livingston, NJ 07039
Tel 973-322-7366
Fax: 973-322-7450

Chrissy, about these lumps. I'm not a doctor and I wouldn't want to try and even try to diagnos what they are. I do wonder though if they have ever been biopsied or tested. The raised white cell count in conjunction with your description does make me think of some of type infection.

The only two things I could think of them being would be either panniculitis or hidrrandenitis suppurative. Listed below are our info pages on them.

Lymphedema and Hidradenitis Suppurativa ... c.php?t=36

Lymphedema and Panniculitis ... c.php?t=37

Do try and get into see Dr. Francis. She can guide you into treatment for the lymphedema and can put a plan together to find out for sure what these painful lumps are.

Let me know how you do and if you have any questions. Only too glad to help :wink:

Pat O'
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