Newly diagnosed

[wyvernlady]

I have been newly diagnosed so I want to find out treatment options. My legs swell up so bad and I am having a terrible time getting a doctor to recognize the swelling as fluid.

[Rhandi]

Hi wyvernlady,

Have you found a doctor that has diagnosed you yet? Is it in both legs? What was the cause (if there was one) of the onset?

I know how you feel. I too went for years before I FINALLY found a doctor that knew what was wrong with me. My personal favorite was being told it was "water weight gain"....only in my ankles and lower legs :rolleyes:

If you have yet to find a doctor that has diagnosed you, find a clinic that does the MLD therapy, they will be able to help you find the RIGHT doctor to go to. Then have the MLD therapy...it will do wonders for you. Is it your lower leg(s) or all the way to your hips? There are some GREAT compression garments out there. My favorites were Circaids. They were a God send for me!!!!

Good luck to you!!!!

[wyvernlady]

No, I haven't found a doctor yet but I am still looking. I got a list of all the doctors in Memphis who treat lymphadema and I'm calling them to see if they will take my insuranceMine is in my lower legs and I was told by several doctors that I just had fat legs. That really burnt me up:mad: because I knew there was something else wrong. But that's how most doctors down here are. They don't listen to their patients :D

[Rhandi]

Doctors can be stupid for as smart as they are supposed to be!:mad: I can completely understand your anger.

Here in Texas I found two wonderful doctors that helped me with my LE. First one to diagnose me was my internist...a wonderful doctor. Then I went to a wound specialist who knows a lot about LE, he sent me to get the MLD therapy.

Mine too is in my lower legs. I suffered for many years before finally being diagnosed. Had no idea what was wrong with me. There are so many great garments out there for us. Again, Circaids were always my favorites - and since yours is lower leg you would probably find huge benefit from them as well. I have said this before (elsewhere on lymphnotes) that I am not fond of the Reid Sleeve. For me it is waaaayyyy too cumbersome. I have only used mine twice and I hate the fact that I spent so much money to get them. I have used my lymphapress pump that worked well for me when I was at my worst.

Now all I have to do is wear compression stockings and that gets me through the day. A huge difference from all the bandaging I used to do.

Keep searching for a doctor. Don't let up. The consequences for letting up are not good!:( Keep trying and know that everyone here is here to support you!

[wyvernlady]

I'm not giving up just yet but I could never afford anything like compression stocking since the only insurance I have is medicaid and in my state, Medicaid doesn't pay for stockings or the pump or anything like that. But I'm going to find a way to get fitted for some compression stockings. The problem is my legs are so big that they'd have to have an especially large stocking for me. Did you go through them bandaging up your legs. I did and it was a real pain. I had to remove them because I couldn't function normally with all those bandages on my legs and when I did remove them my legs were all bruised from them so I didn't want to try that again. I also have peripheral neuropathy in my legs.

Thanks for the support,
Laura

[Rhandi]

Hi Laura,

Yes, I did go through the bandaging. Only during the time of the MLD therapy. I don't know what kind of bandaging you had done...did you do it yourself? Did a therapist do it for you? There is a specific way to bandage the legs...and bruising should never occur! :eek: A foam is used under the special bandages and the bandages are applied with a certain amount of pressure...not enough to bruise...that is waaayyy too tight and can do more damage to the lymph veins.

I don't know what all Medicare will cover. I know that where I had my therapy they had/have a WONDERFUL woman there named Mary that worked with Medicare and Insurance companies. My insurance denied me treatment...but Mary went to bat for me...and helped me to help myself. I wrote the insurance company a letter about what my daily routine was like, etc. Got it to the right person...and just that quick they approved my therapy. Only 1/2 the cost was covered...but it was better than none!!!!!

As for Circaids, you can purchase them for aprox. $1200.00 for both legs (as I recall). I paid for them out of my own pocket a couple of times. You need something more than just your typical compression stockings - you are not at a place yet where that is really going to work for you. Bandaging and the MLD therapy is used to get as much fluid as possible out of your legs...then you get fitted for Reid Sleeves, Circaids, etc.

If you don't mind my asking - what are the measurements of your legs? I do have the Reid Sleeves that I told you about...maybe we can strike some kind of deal if they will fit you. I would rather see them be used than to sit in my closet. Although they are not for me...they can/do take place of the bandaging...it will help get your legs down to a manageable size in order to get into a circaid, etc. I still have the pressure gauge (and you have to be careful not to wear them too tight...just like bandaging) and markers, etc. for my Reid sleeves. They have literally been worn less than five times. I can see that you clearly need some help and I would be happy to do what ever I can.

Rhandi

[wyvernlady]

Rhandi,
HI!
My legs are 26 inches at their largest point. Those sleeves I hear are pretty expensive. I do exercises so they don't seem to be getting any bigger but I would like to get them smaller. This therapist I had claimed she had advanced training in treating lymphadema but she bandaged my legs so tight they bruised. I may try another therapist provided they take medicaid. I have some other places to call on this list I got from another member. I have to find out if they take Medicaid. It depends on what I find out from them. Thanks for the offer but I don't think I could afford to buy them from you because I'm on a fixed income. I was shocked at the price of the sleeves. I do appreciate the offer though.

Laura:)