Gracie Doodle Has Masticatory Myositis (Eosinophilic Myositis)

[Nancie & Gracie Doodle]

I have hesitated posting this discussion but at the encouragement of Nancy (Ned & Clancy) I am now willing to do so in the hopes of educating everyone of this strange disease. My husband and I just could not wrap our minds around the diagnosis when the vet suspected this a few months ago. But when Gracie Doodle showed signs again this last week and would cry out in pain when she yawned or tried to open her mouth to carry a toy or tennis ball, we knew the diagnosis was probably right. I took Gracie back to the vet today and he reconfirmed that it had come back. We had her on Prednisone for a one month cycle and felt it had done the job but now hindsight tells us that she needed to be on it for 3-6 months. We hated what the Prednisone did to her and so wanted our sweet happy Doodle back to normal. She was fine for maybe two months but in the last week it started over. Her first signs were on one weekend outing with my husband people would come and give her a pat and suddenly in the middle of the day she started ducking her head and pulling away. When they got home my husband asked me to come over and pat her. She did the same thing to me. She continued to do it to the point that it looked like someone had beat her and she was shying away in fear. This showed up on a Saturday and we had her at the Vet that Monday morning. He gave her an exam and pretty much nailed it on the head. He gave us a three page print out of the symptoms, diagnosis and treatment which put us into a tail spin of denial and saying this couldn’t be happening…not to our Gracie Doodle who has never had one medical problem or ailment in her life. Fox tails in the paws doesn’t count!! The doctor went through the various tests there on the spot that he could so he could eliminate other ailments. There is a blood test that is given which takes about 10-14 days to get the results back and costs around $400. But the down side of this is that there is a 15% chance the blood test with show negative…but that doesn’t necessarily mean she doesn’t have the disease. For sure a biopsy of the Temporalis muscle on the top of her head would tell. We were not ready to go there. This all became a “Catch 22” where we were damned if we did and damned if we didn’t. This is something you want to catch in the earliest stages possible. Waiting 2 weeks for the results were not an option for us but the vet still insisted on the test. So the next day Gracie was sedated and had x-rays of her head, jaw, neck and teeth. We were looking for anything that might explain her pain like a bone shard stuck in her throat, gum or anywhere in her mouth, cracked tooth…anything. And there was nothing other than a teeth cleaning while she was out. Meanwhile, she was put on Tramadol for pain and Prednisone twice daily for 10 days, then one a day for 20 days and then one every other day for another 20 days. The blood test came back and showed a false negative which is what we were warned. We still had to treat her assuming she did have this disease. During that time she dragged around the house with not a lot of pep, panted, peed a lot but her appetite did not increase as they had said it would do. About two weeks into the treatment I found a huge dark brown stain on my carpet that had no chunks or smell. It turned out it was bile from Gracie. The medication was too acidic for her so we had to start giving her an antacid every day and keep an eye on her. This medicine is nasty stuff and can cause ulcers. Luckily that was enough to calm her down but we did get a few throwing up cycles always on the carpet and not the wood floors! At the end of the treatment she seemed to be doing so well that the Vet suggested we wean her off the pills which were gladly were willing to do. Life went on for a few months and we had our happy, bouncy fun loving Gracie Doodle back. Then last week while I was out of town my husband noticed she was giving little cry outs when she would push her tennis ball out of her mouth after fetching it. Also, when she yawns she gives multiple sharp quick cries. This scares her and she comes running to us and hides her head in our legs. I feel so horrible for her because I know she is in pain and she also gets so concerned about us when she cries. She wants to lick our faces to reassure us she is OK but we know she is not. She has lost her spirit with her toys and tennis ball. If any of you know my Gracie, her tennis ball is her obsession beyond all obsessions. She would catch and carry two balls around all the time. Now she can’t open her mouth wide enough for one ball. She also always greeted us at the door with a toy in her mouth and leave toys all over the house. Now the toys are all in her box and nothing is left out to put a smile on our face to know that Gracie had been there. We went to the vet today and she is no longer going to have a repeat of tests because there is no need. She has gone back on the medications and we will reassess things after a month. We are looking at probably 3-6 months of treatment. But there are no guarantees and it can always return. The one thing we know, if left untreated he jaw could likely lock for good. ABSTRACT: Masticatory muscle myositis is an inflammatory myopathy in which patients most commonly present with jaw pain or an inability to open the jaw. This disease is an autoimmune process in which circulating antibodies specifically target the masticatory muscles. Patients can present either in the acute or, more commonly, chronic phase of the disease. Dogs generally demonstrate no other neurologic or physical abnormalities, which may help differentiate this disease from other causes of trismus. Masticatory muscle myositis requires early detection and aggressive immunosuppressive therapy to improve the prognosis. I scanned this three page report that the Vet gave us that explains what this is all about. It does say that Golden Retrievers and Labrador Retrievers are one of the more common breeds to get this. So after it is all said and done…what does this all mean? What is the final outcome? I do not like what the final paragraph on the third page of this scanned document is saying. What is to become of my Gracie Doodle? This is why it has been so hard for me to discuss. I only told Nancy last night at dinner before they headed back home to Riverside. I just want to cry all the time and no one can give me answers or alternative ways to treat this. This is nothing contagious. It has to do with the dog’s autoimmune system so does that mean it is genetic? There is no way to test a puppy for this…nothing. Why have I been around dogs my entire life and never heard of anything so far-fetched that can happen to a dog? My heart and mind are on overload. I guess I need to take my husband’s attitude…each day when he wakes up he is thankful for another day. This is the way we need to approach things I guess but that won’t be easy for me

[F, Calla & Luca]

This is such a lovely anecdote, with great pictures, about Gracie doodle.

[Lisa, Daisy & Dexter]

Nancie, this is such a hard thing for you all to be going through, my heart is broken for you. The good thing is you noticed early, there were significant signs that treatment was working and the prognosis is good. You will just have to go the full course. Gracie can do it I just know it.

I am glad you decided to share, it is always best to have support and you have many here on DK that will be there for you when you need it.

Meanwhile, I will be praying for all of you.

[Nancie & Gracie Doodle]

Thanks Deanna and Lisa.  It just feels so strange to be posting this.  I never thought I would be having to post something bad happening to my sweet Gracie.  Deanna...I had no idea about your daughter.  So sorry to have to bring this up.  I do hope she is doing well and has great treatment.  

[Deanna & Desi & Cori]

Nancie, Thanks for your concern about Rebecca.  She saw her neurologist yesterday and got a very good report.  She's been responding well to her every-other-day injections, but is temporarily stopping her meds so that she and her husband can provide me with grandbaby #2!!  Last time she had a major flare up JUST as she got pregnant.  This time, she underwent a steroid infusion so that she'd have a couple of months of "protection" against flares, so hopefully all will go well.

From my experience with Rebecca, the unknown was much worse than the known.  Once we had a diagnosis - as hard as it was to hear "MS" - at least we knew what we were dealing with.  You may feel the same way about Gracie.  Now that you know - you can get down to the business of finding the most effective treatment with the fewest or mildest side effects - and start the good fight!!

[Nancie & Gracie Doodle]

Thank you so much Deanna!  I love hearing your daughter's story and that things are well with her.  Wow, hopefully another grandbaby...that is very exciting.  I pray that things go well for her and soon you will be posting her pregnancy announcement.  My daughter has an 11 week old little girl up in San Jose and Southwest Airlines and I are becoming best friends.  The other four grandkids are arriving from Boston next month for a visit.  But...I am so glad to hear that life does go on even after a diagnosis.  Sounds like your daughter is living a normal and happy life as I am expecting Gracie Doodle to do as well.  Hugs to you and Sedona and thanks for your concern.

[Nancie & Gracie Doodle]

Thanks F, Adina, Jennifer and Christine.  I will be sure to tell Gracie you are thinking of her.  I do spend a lot of time just laying with her and whispering in her ear.

[Nicky, Riley & Boris]

I am very sad to read this about Gracies's autoimmune disease.  I know all bout these weird illnesses as I have MS.  If I read all the stuff about it I would have been a basket case years ago.  Let the steroids work their magic and above all pray for patience.  If there is one message I could impart to you right now it is to embrace the 'live in the moment' philosophy.  It's got me through the last nine years amazingly well.  I tell my Doctor that I only need information 'on a need to know basis' too even though I am an information junkie.   I am so glad that you shared this with us here though as Karen says if you could find other owners who are going through the same problems I am sure that  may help, though do bear in mind that the people who sometimes frequent support groups are often those with the most extreme form of the particular illness to deal with. You have my very best wishes for Gracie to be ale to live with this without discomfort for a very long  time indeed.

[Lucy & AnnaBelle's Mom]

Know that we are thinking of you and Gracie Doodle.  Glad they talked you into sharing as now you have an outlet to talk about it and share your thoughts.  Hang in there and hugs to you all.

[Barbara B., Sasha & Oliver]

I'm so sorry to hear this about Gracie doodle, I hope treatment will get her back to her old self soon.

[Laurie, Fudge, and Vern]

Nancie, I am so sorry to hear about sweet Gracie Doodle. The whole time I was reading this, I was thinking, "not our Gracie Doodle." It sounds like this is a "take one day at a time" kind of illness and I know she is in the best hands with you and your husband. I will keep all of you in my prayers and I hope Gracie is back to her old self soon and chasing balls with the best of them. Hugs to all of you!!

[Becka]

I am so sorry to hear about this sad and scary news. It sounds like it will be a long but ultimately healing road for Gracie.

[Sherri, Sophie, Winston, & Kitty]

Nancie, I'm so sorry to hear this. My heart is aching just thinking about it. I have always thought of Gracie doodle as a picture of a perfect health and temperament. I'm sorry she is going through this, I can't imagine how hard it is. Like Karen said, She will get better! Take care and keep us updated. My doodles are sending kisses Gracie's way! Stay strong.