New to site with many questions

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New to site with many questions

Postby wvwriter007 » Mon Jun 20, 2011 8:33 am

Hello, I live in West Virginia. I am five foot three inches tall and had always been small until the last thirty years when i started having babies (three total) and started gaining and keeping weight. I raise my almost 9 year old grandson and over a year ago a doctor looked at my leg (left calf) but never touched it and said I had Lymphedema/Lipedema and sent me to an OT that specializes in lManual Compression and bandaging. My insurance only covered 8 sessions, said it was plenty. At the end , I got custom compression socks (two pair a year) which wore out within months and I had to use OTC ones. I appealed and reappealed and was awarded 10 new ones so I now have new socks. This second round of OT she did not bandage me like she had in the beginning and only did it a couple days. She said she wasn't sure lymphedema was the problem. I am waiting to see a speicalist at the Cleveland Clinic. Everytime I tell a doc here I have it they write edema down and don't even address it as anythign different. My family doc kept me on a variety of fluid pills for years and it grew and grew. Sometimes the socks do seem to make me feel worse in general. My legs get hot, itchy, but they feel warmw ithout the socks anyway. Sometimes, my legs hurt with the socks but they have hurt without though not as much. I cannot find anyone that seems to know much of anything about this. I want to be able to walk comfortably, take a midday shower, go to the pool. At this point, a pair fo these go on before my feet ever hit the floor and one pair comes off at bedtime to be washed and wore two days later and they alternate that way.
I also have been diagnosed with other health issues by specialists at the Cleveland Clinic. I have Occular Migraines, Fibromyalgia, Psorasis, tested positive for the first Lupus test but was told I was olay for now after the scond one whatever that means and have had Vitmin D issues before even though it is good now. I also have High Blood pressure and allergies to dust mites, some pollens, grasses,chemicals and things.
I am waiting for a second opinion from a Neurologist now as I had an episode where I fell asleep behind the wheel of my car in Jan. and thank the good Lord for delivering us from that. it was midday, I looked over and told my son I was getting sleepy and minutes later he screamed and I woke up. I was really sleepy after that for a few hours. I am not sure what was wrong but because of t they did an EEG in early June and they now say I am having seizures and they don't know why. I am wanting a second opinion, because the first EEG was an hour and the noise and distractions were so bad as exhausted as I was I could not sleep well.
Last March, I had a laproscopic umbilical repair and developed pneumonia. I had a horrible year afterwards, the good part was I am stilla live, rebuilt my relationshipn with God and lost 60 pounds though I still need to lose at least 60 more. They say more but I would feel good with 60 more off, I feel better now with the first 60 off than I have in years.
I need to add, I have lots of stress as my 32 year old son lost his dream job after a corporate takeover and his girlfriend of 8 years dropped him (she tortures him all the time, almost stalking him to verbally tear him down but the cops won't do anything, the psychs think she is nuts and needs locked up)but he tried to kill himself Fathers day a year ago and has been tryng every since. My husband worked away for two plus years 7 days a week, I was lucky to see him thirty minutes a week and speak to him a few minutes a day except for an isolated week or two in that time. He is now back home, thank you Lord Jesus.
Any and all help appreciated. I take my BP meds and it seems very well under control but I feel lightheaded all the time (esp. the last year), I pee light green (they say this is from the compression socks releasing toxins), I lose my balance, been getting sores in my ears often and having stuffiness in the sinuses while running at the same time, eyes either too dry or running and the ENT says its natural allergic reactions, no problem but sometimes I feel like I could pass out. I had a heart cath last Sept. the doc sais "beautiful arteries" (thank you Lord Jesus) but my cholesterol is now up some (no pill, I hate medicines). I look forward to some assistance even names and numbers of people who may help with any of these issues. Thanks and God bless
wvwriter007
 
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Re: New to site with many questions

Postby patoco » Mon Jun 20, 2011 8:46 am

Hey WVwriter :)

Super welcome to our family :!: :!: :!:

I think you should be able to find answers at the Cleveland Clinic. They have the reputation of being among the very very best and I know other lymphers who go or have gone there.

I am really curious though as to what made that therapist decide it wasn't lymphedema? And also once they decided this, did they contact the doctor and discuss it with him? This really bothers me and just not sure what she did was appropriate.

In management of lymphedema, you go through manual decongestive therapy or CDT, wrap compression bandages on the limb and/or have custom fitted compression garments made for the limb. All this together should provide relief and help keep the swelling under control.

It's interesting too that you have had problems with Vit D levels, as odd as it seems, I know of many many lymphers (including my own family) who have low levels of that too and have had to receive supplements. Same with fibro.

It just seems that so many of the problems you have, I see lots of other lymphers with too. The conditions usually involve autoimmune conditions.

So, hang in there my friend. We are always here for you and will try our best to answer any questions - and we have very good listening skills too if you just want to vent. LOL...we really understand that too.

My best to you!

Pat
patoco
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