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Judyin Philly

Cellulites-has Anyone Had It? Dx Fri Am After High Fevers

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I was just getting on line to check on you!!! What good news! The prayers paid off! :D Enjoy the garden, but don't get carried away!!!!!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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Guest BERNESES

Oh Judy- I'm so glad!!!!!!!!!!! That's great news.... I guess all things pass. I'm so glad you're doing better but you remember to GO SLOW. I'm only a six hour drive from Philly :ph34r: XOXOXO, Beverly

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Judy-

Hope you get more garden time today :) Sent you an e-mail...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Hi All--need some more 'positive vibes' for vascular surgeon apt at 9:30 tomorrow am. Hubby taking me so more relaxed this time as don't have to worry about parking and walking miles to get to office. Can't believe it was May 30th when i first got the 'chill's It's now into the 7th week. I think the celluititus is gone but the lymphedema is no better at all... :ph34r:

The first 2 weeks spent trying to get the right ace bandage and the 2 ordered compression stockings. nothing worked. Hubby and I tried so hard to get the bandages to stay where they were susposed to w/o cutting off circulation. Didn't master that :blink:

The custom made stocking didn't come in till yesterday at 5:00 pm and by that time couldn't get them on.

This am tried again, couldn't get them on..well, they got on but just cut deep dents in 3 places and the top kept rolling down and that's not good.

Soooooo, given this...I finally went on the internet and researched alot of info on this condition.

one said could be caused by tumors which is what i think is happening since i have 4 in calf and 1 in upper thigh and one big one in buttox..so know it will mean more test so he'll believe me and see if they are compressing on the (?)vessels.. see this is where i get lost..looked at a chart on the lymph system and where it goes but what do I do. Trust the dr to ask the right Q's as he did last time and there were alot of people in waiting room with this problem.

he said if the ace and compression stocking didn't work would order (and was sure i'd qualify) for one of those sleves pump. Had it in the hospital after hip replacement but don't know anything about it..

just thinking about traveling with the CPAP and now this thing..but i degress and must focus on info for tomorrow....stay focused Judy.... :blink:

Here's the questions I've come up with--

1. why did the celluititus cause the lymphodemea? Since all my symptoms seem like those of ymphangitis (infection) could that have been it other than celluititus?

2. could the tumors be causing to lack of circulation?

3. do I qualify for insurance to cover 'manual lymphatic drainage' by a certified specialist? Thanks Lynne! :)

4. do you have a person you can recommend?

5. can I resume my weekly swimming program in a rehab center with pool at 90 degrees?

6. can you write a note so i can re instate the the insurance re emburcement? can the rehab swimming come under PT and be covered by insurance?

7. can I go to the rehab center I presently attend and went to after hip replacement? Or, do you have one to recommend?

Well thanks for listening to my ramblings..at least it helped clarify my thinking and questions for tomorrow.

I'm really in a pretty good place mentally..just weary of the long process...know you can identify Tanya.

Lynne good luck on apt tomorrow. Let me know how it goes ok. Thanks too for the support this week.

Jen, glad you are happy with the house decision.

Armetta, how are you?

Karen, where the heck are you?????

Patti, still haven't heard the details of your trip?? hope it went well!

Rhonda, thanks for ck'n out this thread --it was a long read I know!...so happy your on the board.

Tanya sounds like things are better or more stable right?

Bev, guess hubby is working alittle? didn't see any posts but then really just scaned the 'topics' fast.

Robbin and Fiddle Faddle--thanks for the support in the past.

hope i didn't leave anyone out.

Haven't been on much today & since the stocking and the ace weren't working I just said --heck what do i have to lose...after resting and keeping foot up went onto deck and repotted some plants and did some much need work...Hey, the soul needed some 'gardening' time..I did it their way and now it's my turn.

will let you know what the dr. says...so hope you keep me in your thoughts and prayers

love and hugs

judy in Philly


Judy in Southern CA

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Guest Robbin

:) Judy, you are in my thoughts and prayers and I hope the dr. appt went well. I couldn't get online until late, and didn't catch you. Let us know what the dr. says. I hope you all have a good nights' rest.

Armetta--You stay well too and keep us updated! I hope you aren't getting any of that wildfire problems in your area. I have a friend in Tucson who is sick of the horrible heat (she's an Ohio girl in the desert :blink: )

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hi Robbin

just turning off computer and saw your post. i didn't post till late tonight and apt tomorrow am..so you made it. :lol:

Judy


Judy in Southern CA

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Matilda-thanks so much.

by the way, i had my kitty avatar (down now as was putting up a flower from the garden but it won't go..)

up and was going to email you and tell you how much they look alike i think i'll put it back up now.

judy


Judy in Southern CA

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AH!!! Curses being out of town! I hope you are doing well! Thinking about you Judy! Big Hugs! Tiff


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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Hey Judy Darlink!

e-mailed you lots of good wishes and healthy vibes.......

(I threw my back out again a few days ago so haven't been able to sit at computer for any period of time, so I have been out of touch...... icing it right now and trying some suggestions Lynne gave me to see if it helps.....

Good luck tomorrow!

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Hubby how has the lyphedema in both legs and it got increasingly worse.....after the bursa removal operation it got worse. Connection?

Anyway, what kind of doctor should he see first? He's the type of person who you only have "one shot" at a doctor. If I trot him to the GP and they refer him to a specialist he'll get annoyed as he would have wanted to bypass the GP and go directly to that specialist....is there a special lympedema doctor?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Thanks Tiff and Karen..Deb so glad you wrote cause i was trying to remember whose hubby had this and tired to find your other posts yesterday but :blink::o;) wasn't in my 'best mentally' to remember anything. I found a great site, that i bet you alread found, but it has specialists listed by States. I see your in NJ. I think i have your personal email and will try to forward the link. no sure how to do that through the forum email...Gosh, I don't know anything about this either but think there are 2 or 4 kinds of 'L' and one following surgery.

i'll try to forward the link. If your insurance doesn't need referals, you could go straight to one. i could ask my dr this am about one in NJ. Where in NJ are you?

yes, it's early,,couldn't sleep. Was up at 4:30.

Judy

Hubby how has the lyphedema in both legs and it got increasingly worse.....after the bursa removal operation it got worse. Connection?

Anyway, what kind of doctor should he see first? He's the type of person who you only have "one shot" at a doctor. If I trot him to the GP and they refer him to a specialist he'll get annoyed as he would have wanted to bypass the GP and go directly to that specialist....is there a special lympedema doctor?


Judy in Southern CA

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Judy,

I really do understand how bad the hassle can be. I hope today goes well and you get some answers!!! It's so hard to be in limbo. Please let us know what all he says as soon as you can!!!

Hugs!

Tanya


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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thanks Fiddle and Tanya and hey, Lynne--thanks for the 'baby power' tip to get this sucker on.

IT'S ON BUT CUTTING INTO THE BACK OF THE KNEE WHERE THE VERACOSE VAINS ARE :blink::o:unsure::blink::o KNOW THAT'S NOT GOOD BUT LET THEM SEE.

GOTA GO

THANKS AGAIN.WILL CK ON THE "L" FORUM WHEN I GET BACK..JUST DIDN'T WANT TO RESEACH ANYTHING YEST BUT DID SOME.

JUDY ;)


Judy in Southern CA

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Judy,

I hope your doctor’s appointment went well. Have you heard of (MLD) manual lymphatic drainage? It is a massage technique to help the lymph drain out of swollen tissues. It is supposed to be very gentle.

I hope you get completely better soon.

Rhonda

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Judy, I hope the doctor appt. went well and that you got some needed advice. I am glad that you wore your stockings so that they can see what they are doing to your leg. Please let us know what the doctor said. Still praying and sending lots of big HUGS your way.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Yes Judy...curious to hear how appt went...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Hi

Thanks for the support friends. Apt went well I'm just so exhausted. got home after 3 hrs of running to chiro and drug store, leg hurt so took of ace that the assistant put on with gause pad in places that are deformed do to tumor. There were about 4 horrid deep dents so no wonder it was painful. We both thought it would be the way to wrap it. Gave me phone #'s of more alternative kinds of compression options..all to be reseached my me...about 10 phone calls and then went to bed for 3 hrs

So no answers but alot of options one being the MLD and called about that

Good news can start swimming on Monday again.

what to do for compression till Mon..who knows...??? :blink:

too tired to eat and Jim is cooking something for himself. thank god he's independent. I just don't want to eat + it's so hot and humid here.

So all is good and cellulitius is gone but Lumphedemea is here for sure for life. Maybe the reality of living with this is hitting me on top of knowing i need the tumors out. Oh Bernese, he said he knew that the tumors were not the cause of this..or poor cirrculation..so got all questions answered but just the options to figure out.

thanks

judy


Judy in Southern CA

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Guest BERNESES

Hi Judy- glad that appt went relatively well. You must be SO tired. Big hugs, Beverly

PS Kurt had an echocardiogram today which showed his heart is perfectly normal- no clots, congenital defects, artery problems. Still waiting for blood test results, but relieved. Thanks for asking sweets.....

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Hi Judy- glad that appt went relatively well. You must be SO tired. Big hugs, Beverly

PS Kurt had an echocardiogram today which showed his heart is perfectly normal- no clots, congenital defects, artery problems. Still waiting for blood test results, but relieved. Thanks for asking sweets.....

thanks Bev--so happy about Kurt.

judy


Judy in Southern CA

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So glad the Cellulitis is gone, but sad that you have to figure out what treatment to follow up with for the tumors. I can't imagine calling 10 places trying to get answers for this. LOL. Of course I can as we all have placed hundreds of calls to see if we can safely eat something :blink: Duh, I can't believe that I said that statement about placing 10 phone calls. I guess I need to go back to bed and see if my brain regroups.

Glad your home and that you took your nap. Prayers and Hugs.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Hi Judy :D I was thinking about you today--I'm glad that you got some good news! I think swimming will be very good for you--nice gentle excercise for your leg, without the threat of getting overheated. One step at a time....


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Patti and Armetta--I know, i'm JUST GOING TO FOCUS on the 'swimming and gardening' in moderation of course..but seeing beyond today and back to 'getting my old life back, such as it was :blink: ' HELL anything will be better than the past 7 weeks and no HOSPITAL always have to come back to that..

now i still haven't eaten anything but tuna and the CANDY BAR today need to eat but want to take a load down stairs and down to basement on the way....grrrr. I'm putting away all the 'bedding' Jim even came into the room today and said it looked like a 'bomb went off in here'

so putting all laundry away and 'sweaters...do you believe when i started this 'event' i was wearing a sweater..

Armetta..don't worrying about the 10 phone calls comment. i knew what you meant and i wouldn't have even been so 'taxed' about it but could only get those damn, 'your call is so imprortant to us that we are going to give you 10,000 prompts to pick from and when you decided to pick one...THERE STILL WON'T BE A PERSON TO TALK TO .

JUDY


Judy in Southern CA

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