13 March, 2009

a Friday funny

I had to ring UHC today to follow up with more claims as their process is so insane it takes time every day to make sure everything is being taken care of on their end, by me. I think I should get a paycheck from them. Anyway, whilst I was on the phone I asked the rep about this "30 day Physical therapy" bit they have listed. My PT and I have had to rush as much as we can so we do not use up all of my 30 visits as that's all that is covered for the year. NOT per body part or problem, but in total. I was shocked to learn that. I had thought it was per problem, as that is what it was on my previous insurance.

Here's the funny part, she said that it's only for 30 visits so "the therapist can't lie to you and tell you you're not improving and tells you to keep coming back so they can keep getting paid". HA! More like UHC trying to save money and neglect patients that really need the coverage!

I explained to her that one can usually tell when one is improving or not, and what happens if you G-d forbid have an accident or something goes wrong with another part of your body - and you need PT? She said that you can always write to UHC BEFORE the 30 visits are finished and they will review the case, and you should send in medical histories and a note from the doctor saying why it's medically necessary. I tried not to laugh out loud - as those of us who have tried this after being cut off know there is a minimal chance of you ever getting those additional visits you need. I did mention to her that I found it strange that the insurance companies put weird restrictions on recovery times for specific problems, like if you're in PT for your neck, you should be better within 6-8 weeks, or something along those lines. She actually agreed, but she's also just a rep and doesn't have any control. Still, I had to mention how absurd it is to assume each persons body is exactly like the next persons as it just doesn't work that way.

I truly hate insurance companies................

06 March, 2009

There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS. More detailed information can be found in our Medical Professionals Section.

General Frequently Asked Questions
Hypermobility (Formerly EDS Type III)

Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees)and small (fingers and toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella, and temporomandibular joint dislocate frequently. The skin involvement (hyperextensibility and/or smooth velvety skin) as well as bruising tendencies in the Hypermobility Type are present but variable in severity.

Chronic joint and limb pain is a common complaint amongst individuals with the Hypermobility Type. Skeletal X-rays are normal. Musculoskeletal pain is early onset, chronic and may be debilitating. The anatomical distribution is wide and tender points can sometimes be elicited.

To date, no distinctive biochemical collagen finding has been identified by researchers. The Hypermobility Type of EDS is inherited in an autosomal dominant manner.
(from EDS National Foundation site)

What is EDS?
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

What are the symptoms of EDS?
Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.

Skin: soft velvetâ-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
What are the types of EDS?
There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that "runs true" in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS. Learn more about the different types of EDS.
How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes began in the late 1960's and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. Learn more about the EDS nosology and how EDS is diagnosed.
How prevalent is EDS?
At this time, research statistics of EDS show the prevalence as 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.
How is EDS inherited?
The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children. Read more about hereditary patterns.
What is the prognosis of someone with EDS?
The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.
What can I do now?
The defining trait of those affected by EDS is the search for information. The rise in Internet usage in the last few years has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible a decade ago. Learn more about the benefits of EDNF membership.

01 March, 2009

EDS

Ehlers-Danlos Syndrome

• Ehlers-Danlos (pronounced A-lerz-DAN-los) Syndrome, an inherited disease, is a defect in the connective tissue that supports many body parts, including muscles, tendons, ligaments and skin.

• The fibrous protein collagen is faulty, causing connective tissue to not be elastic or strong. Collagen acts as glue in the body, adding strength and elasticity to connective tissue.

• There are six major types of Ehlers-Danlos and symptoms depend on the type. Symptoms include loose, unstable joints and skin that bruises or tears easily.

• The syndrome may be diagnosed with a skin biopsy, a physical exam and a review of family and medical history.

• There is no cure. Treatment options vary and include joint protection, surgery to correct fractures or dislocated joints, pain management and having a strong support network.

• Sources don’t agree on the prevalence of the uncommon syndrome.

• People with Ehlers-Danlos generally have a normal life span. The syndrome does not affect intelligence but physical activity often is restricted.

SOURCES: The Arthritis Foundation, Ehlers-Danlos National Foundation, Mayo Clinic, Healthline

24 February, 2009

slight improvement

in the overall pains, but still a lot of shoulder wonkiness as well as neck stuff. Sunday was slightly rough but that was b/c of the crap weather. Haven't been to the pool since last week, may try later but had PT this am so will see how I'm feeling. We worked a lot on shoulder and neck stuff, tomorrow we're going to do more core work. Tomorrow was the last appt I had booked, but the PT said to book the next two weeks, twice each, and then we'll see if I can go down to once. After that she'll have a routine for me and I can hopefully just do it myself at home.
I can't wait for it to start warming up so I can at least do more walking. I feel so inactive.