Doctors and managing LE long term....

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Doctors and managing LE long term....

Postby Barb » Thu Jun 29, 2006 9:49 pm

I am so frustrated today. I forwarded some disability insurance papers to the podiatrist who diagnosed my LE and who sent me to treatment. They don't really want to fill out the papers and want my family doctor to do it. I saw him for 15 yrs and he never diagnosed LE so I am not sure he'll know enough to fill out the paperwork correctly. I feel so lost and alone. Doctors really don't want to mess with this LE stuff apparently.

I have bilateral lower limb LE. I was diagnosed in Feb by a podiatrist that my family doctor suggesed I see due to pain in my foot. Now that I know the symptoms of LE I can easily trace identifiable stage one sypmtoms to almost 10 yrs ago, and I believe the catalyst was a badly broken ankle 20 yrs ago that required 3 surgeries.

I have worked so hard to be compliant. I undertook 3 months of MLD therapy 4 days a week, finishing one month ago. I have purchased two ReidSleeves that I wear at night. I am still bandaged every day and just this week ordered two pair of expensive compression panythose that of course the insurance company had denied payment for. My legs look sooooooo much better at this point...but of course I can never stop working to keep them that way. It's a vicious circle.

I was off work during my 3 months of treatment and I returned to my desk job in early June. I am currently working 6 hrs a day and have submitted a claim to the long term disability insurance policy supplied by my employer so I can be reimbursed 60% of the pay that I miss each day (2 hours daily since I'm working 75% of the day.) I just can't make it through all day it seems. It just hurts too much by days end.

But now I don't seem to have a knowledgable doctor to oversee my disease for the rest of my life. My OT therapist is so wonderful and so knowledgable...but she cannot sign insurance papers of course.

Should I go talk to my family doctor and try to educate him so he can act on my behalf? Should I try and persuade my podiatrist to do it even though it's obvious he doesn't really want to. Should I search out a vascular surgeon and start from scratch? I was hoping to be able to get some money supplementing the budget very soon. Sometimes it's hard to believe how little the medical community knows (or seems to care) about lymphedema.

Thoughts anyone?

Kansas City
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Location: Kansas City

Doctors and managing LE long term....

Postby patoco » Fri Jun 30, 2006 12:52 am

Hi Barb

I think I would work with both. Try to persuade the podiatrist and at the same time try to educate the primary doctor. Also, while the therapist can't sign the disability papers, try to include a statement from her.

Does the podiatrist say specifically why he is so hesitant? Does he feel he can secure documentation to back up the claim?

You may want to search through some of the sections to provide him with additional information that would help.

Also, our page on Social Security Disability has some tips you may want to read, as they give guidelines that could be applied to group or commercial insurance:

Tips for a Person Applying for Social Security Disability

1.) Apply as soon as you and your doctor consider you disabled.

2.) Keep a diary.

3.) Don't understate your condition, but don't exaggerate either.

4.) Fill out in detail every question on the forms . Add extra pages if you need more space to be complete.

5.) Be descriptive about your condition and how it affects your life . . . give specific examples.

6.) Keep a record of all medication changes, any reactions you may have, how often you take the medications, etc.

7.) Follow medical advice.

8.) Keep a record of how much time you spend traveling to and from the doctor or clinic, how many days a month you do this and how long you wait in the office to be seen.

9.) When something is wrong, don't delay in seeking the doctor's advice, or speaking to the nurse; this way it will be entered into your medical record.

10.)Make sure that all medical evidence about your condition is on file.

11.)Remember the Primary Treating Physician's opinion carries the most weight! The Social Security examiners have never seen you.

12.)Have your doctor do a complete examination and write a letter explaining your condition in detail.

13.)If you're turned down on the initial application, you are entitled to go into the SS office and copy both the medical and non-medical file, but there probably will be a copying charge.

14.)If you are turned down, do not become discouraged, You will probably do better if you appeal and have the appeal handled by a lawyer specializing in appealing such cases. the fees of such lawyers are determined by the Social Security Administration, and are moderate.

This list also comes from a membe that was just approve for disabaility and some of the steps she went through:

1. I have been keeping all records from doc visits and making sure my other docs sent their notes back to my primary doctor.

2. I was also very honest with my primary doctor about how I was feeling. When the doctor asks you how you are feeling they really don't expect you to say fine all the time. I went to the doctor about every other month and have since started going every month because of my pain meds that need to be monitored.

3. I made a list of daily activies that I must do to manage my condition and how much time they take. I also listed daily living activities that I'm unable to do-cook, clean, write for longer than 15 minutes, shower when I'm home alone, etc. I gave this list to my primary doctor, my counselor, SSDI(still being processed) and Short and long term disability.

4. I took pictures of what I look like in my compression garments during the day, picture of the 4 reid sleeves I wear 4-6 hours during the day and to sleep at night, and a picture of me in bed wearing all 4 reid sleeves and a cpap machine for sleep apnea. I think these pictures helped the most because they made me a person and not a case number. Copies of these went to my primary doctor, my councelor, SSDI, and long and short term disability.

5. I have been seeing a councelor for about a year now to deal with this disability and I fully disclosed the records to ssdi and the short and long term insurance. I highly recommend you seeing a councelor if you are having problems dealing with this disability as she has helped me grieve for the future I expected and is helping me accept what my life and future holds for me now.

6. I personnaly talked to the short and long term insurance processors and made sure they had all the records they needed. I also sent several articles on LE to help educate them on the condition.

Some of the pages on the index to the left include:

Diagnosing Lymphedema by Physical Examination ... nation.htm


An Overview of Lymphedema ... hedema.htm

may be particularly helpful in educating the doctors as well.

Is the podiatrist Dr. Gentry?

Hope this all helps, please let us know how you do.

Best to Ya


Postby Barb » Fri Jun 30, 2006 10:58 pm

Thank you Pat for all the good information. I was thinking of you the other day at work and wondered what we wuold do without your help. You truly do make a difference in so many lives. You may not even realize the impact that you have but I know it is true.

And yes the podiatrist is Dr. Gentry. I added his name to the list quite some time ago but I now think it would be best not to include him as a resource. He maintains that as a podiatrist he is not a specialist in lymphedema and I do not think he has any interest in overseeing the care of this chronic disease. A very nice man but I just don't think that his name belongs on this list. I couldn't figure out how I could remove it so perhaps you won't mind doing it for me.

Thanks again!
Kansas City
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Postby MaureenKennedy » Sat Jul 29, 2006 11:10 pm

I worked for Social Security for 30 years and was a claim representative, who took disability claims. The biggest reason I found that people's claims were denied was because of lack of information and lack of listing ALL medical conditions, not just the primary reason you think you are disabled.

Many times a person's condition may not be severe enough by itself to meet the medical listings of "disability" (and if you are denied ask them for copy of the medical listing criteria under the freedom of information act). However, upon compilation of ALL impairments, the combination may be great enough to warrant a definition of disability by Social Security.

Also, some medical things are subjective - like the issue of pain. Some people can bear more pain than others. Levels of 1-10 are not necessarily good in describing pain - you need to go into detail like sharp needle pain, dull achy throbbing pain, spasm pain, etc.

Also length of problem is important - in many appeals of social security denied claims I would have to draw out the information from the client (YOU GUYS) as to when it first started, what symptoms were noticed, who did you see back then (even if they did not know what was wrong with you). You must list ALL medical sources, even if you don't think they are important to your case. You just never know and Social Security is obligated to get all those medical reports at no charge to you!!!! The only time they stop getting the medical reports is when they have enough to approve your case and no need for further evidence.

Additionally I can't help but say it is so important to describe how your conditions affect your daily life. It's also VERY important that if the conditions affect you mentally, such as depression, that this can change your daily life so dramatically and you must mention all the things you might be ashamed to tell another person!! If you are embarrased to say these things, then take the form home and complete it there and return it (Uusually it's called Daily Living Activites form). When a person is seriously ill, depression can change their life and how they react with other people including their family. They no longer have an interest in activities that they used to do, they shun being around people they knew and generally might become a hermit because of their medical condition.

I can't STRESS enough that you mention if you are having bouts of depression inaddition to lymphedema and other medical problems. You can sumit any documentation you want for your claim, including statements from relatives, friends and other people telling about the changes they have observed in you. These statements are considered medical evidence and will be used in conjunction with your doctor and hospital reports.

You have the right to review your file at any time - so if you are denied you can ask to read the medical reports. When I last worked for SSA, they did not charge for making copies of your file (they may do so now, I just don't know- but it should be minimal in cost)
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Thank you

Postby gary1955 » Wed Aug 02, 2006 1:28 am

Maureen... Thank you for posting this info about social security disability.
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