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muscle weakness in my biceps is making showering substantially more difficult, especially because my muscles get weaker with heat

(open to advice that isn't cold showers)

#dermatomyositis #polymyositis #<- tagging rheumatologist suspected diagnoses but not confirmed yet #muscle weakness #physical disability #physically disabled #chronic illness #chronically ill #autoimmune disease

List your Myositis Doctors

In an effort to create a better listing of physicians who diagnose and treat #myositis, we are asking you to use our web form to enter as many details as possible about the physician's you see for your myositis. This will be helpful for patients looking for a new doctor and for new patients looking for their first.

There is also a rating when you list the doctor. Please rate them seriously according to how you feel they understand and treat you and myositis.

We appreicate your support in this endeavor.

https://UnderstandingMyositis.org/list-doctors

#myositis #inflammatorymyopathy #polymyositis #dermatomyositis #inclusionbodymyositis #sIBM #link

Its over; Its done.

So a few things have been going on (medically) since my last entry: I’ve gotten my first cancer screening, my first EMG, and had my first dispute with my insurance. A lot of people don't know but there’s a large percentage of polymyositis patients that go on to have cancer at some point in their life so its recommended that poly patients have annual cancer screenings. Seeing as i’ve never had one since being diagnosed 4 years ago, my doctor suggested I get one done. Since being diagnosed, I read a lot about the poly/cancer connection and started to have an irrational fear of cancers because of it. The impending CAT scan began to be horrifying but luckily i began to realize that I was worrying about things that may not even be true and luckily they weren’t since my results came back negative (YAY!!). Now that that was out of the way, next came my first EMG. An EMG is used to measure the muscle damage in a person without having to do a muscle biopsy. The EMG is made up of two parts but both are equally uncomfortable and awkward feeling (not painful). There’s a taser type tool they use to shock your muscles to see their reactions and the other is a small acupuncture type electrified needle they use to just stick in the muscle. The only thing I could compare the tests to would be like plucking out single hairs from sensitive areas on your body; it kind of hurts but its more uncomfortable than anything. Those results were more immediate and everything came back with minimal muscle damage progression so yay!! Then came my issue with my insurance. So my issue with my insurance has been that they don’t like the setting that my infusions take place (hospital setting versus office setting) so they denied authorization for my infusions on two separate occasions. After submitting multiple appeals for both occurrences and getting my insurance to acknowledge that my other options for where to have my infusions done (at home or at my choice of two infusion centers both being an hour away), my insurance caved and allowed two months worth of infusions. I was happy to get just 2 months of approval but my awesome doctor and her staff stayed on top of my insurance and submitted a prior-auth for infusions for a 1 year period (not 2 months) and my insurance agreed!! Now I don’t have to worry about when I’ll be able to receive my treatments! This all being said, I may have been terrified when each of these events were going on for various reasons but nothing compared to the scare I had when Trump began talks of dismantling the Affordable Care Act and changing the way insurances care for patients (and not for the better). I’m the insurance company’s worst nightmare: I’m a young, sick, and chronically ill person who will need treatments for the rest of her life. This means that I’ll be constantly using my insurance and with my current policy, I only use my insurance for the first two months of the year and by then I’ve hit my out-of-pocket (OOP) maximum so I get coast the rest of the year with 0% responsibility after meeting my OOP. I probably ring up tens of thousands of dollars a year and imagine would the amount would be after a few decades. A lot, right? Well, under Trump’s suggestions, the insurances would change their current policies to allow the insurances to no longer accept pre-existing conditions (thats me). This would also effect those with private insurance outside of the Healthcare Marketplace (also me). When Trump began talking about changing the current policies on healthcare to help out insurance companies instead of the citizens that need it, I became scared for my life. Luckily, the rest of the world agreed was like me and Trump backed down on his appeals.

Now that all of the fear and anxiety has passed, I’m going to focus on the best time of the year (IT’S FALL, Y’ALL!) and all it brings with it. Maybe focus on my birthday this year too (turning the big 30). But I definitely feel like Frodo after he finally got rid of the ring. “Its over; its done.”

#polymyositis #myositis #the Myositis association #autoimmune disease #muscle disease #Muscle #EMG #cancer #insurance

Do you have a Dutch Shepherd?

Dr. Karen Wroblewski, a veterinarian in Michigan and contributor to the Puppy Foundation program at the Penn Vet Working Dog Center, recently diagnosed 4 Dutch shepherds with a severe form of polymyositis. The diagnosis is ultimately made by performing muscle biopsies. The condition causes moderate to severe inflammation in multiple muscles of the dog. All pups were initially thought to have had hip problems because they all initially presented with rear limb gait abnormalities between 3-12 months of age. Both males and females were affected. There was a fifth pup that was diagnosed in California. Unfortunately, it is a progressive, painful condition and all 5 dogs were euthanized before 20 months of age.

Fortunately, we have DNA samples on all 5 affected dogs and University of Minnesota is working on a DNA test so that breeding dogs can be screened with a DNA swab test. They are in the final stages and need to test several DNA variants in a larger, diverse group of Dutch shepherds to evaluate their results. They are requesting 24-48 DNA samples of healthy, unrelated, adult Dutch shepherds.

Please contact Karen if you are willing and able to help or have any question! It is easy to collect DNA with cheek swabs and you would just need to mail them to U of MN after collection. If you have a pedigree it would help but it is not mandatory to participate.

Please contact Karen if you have any questions about the study, the disease or anything else.

248.476.0570 [email protected]

Penn Vet Working Dog Center’s Facebook post (13 March 2016).

#dutch shepherd #polymyositis #canine health

Myositis Support and Understanding Association Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases

Lincoln, DE—February 20, 2018—Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

As part of the MSU patient-centered focus and commitment to educating and supporting those with myositis, a rare disease, MSU is hosting two live online video education sessions on Rare Disease Day, February 28, 2018, as well as a month-long celebration with patient support and activity sessions. The focus for MSU is the idiopathic inflammatory myopathies, which includes dermatomyositis, polymyositis, juvenile dermato- and poly- myositis, inclusion body myositis, and necrotizing autoimmune myopathy.

Dr. Victoria Werth, MD, will join MSU for a live, online video education session titled “Overview and new developments in dermatomyositis” at 2PM EST on Rare Disease Day. Register here.

Also, Nurse Vicky Starr, RN, IgCN, will join MSU for a live, online video education session at 6PM EST on Rare Disease Day, titled “IV and SubQ IG Therapy for Myositis.” Register here.

See ful release

#myositis #inflammatorymyopathy #polymyositis #dermatomyositis #inclusionbodymyositis #sIBM #link

Open Enrollment for the Health Insurance Marketplace begins in 2 days, Nov. 1st.

Don't miss your opportunity to enroll or renew your Health Insurance through the Marketplace. Window-shop plans today to be ready.

Shortened enrollment period this year - Nov 1st - Dec. 15th for most states. See full article for additional details and some helpful information.

Remember, these plans are required to cover pre-existing conditions, such as #InflammatoryMyopathies #Myositis and are required to cover essential health benefits. Plans carry no annual or lifetime limits.