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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

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Nancie, I am so shocked and saddened by this news, I just can't find the words right now but we are praying for you and Gracie. Xoxo ~SRB

Oh Nancy and Gracie....... what a weird thing.  Autoimmunes are so difficult to accept, but usually can be managed.  Your husband's advice is good.  Enjoy each day, and help Gracie to enjoy each day.  Mostly it seems there are no whys or reasons.  She will get used to the steroids and begin to be a bit more normal and then she may get to be weaned off them.

Roo and Tigger send their hugs.  Roo says he really feels for Gracie not be able to carry a ball in her mouth.  Boy, that would be a bummer, but he thinks Gracie is also probably getting more hugs and kisses, which he thinks is really good.

 

Please know Gracie is in my prayers.  So sorry to hear this.

Oh dear - I just hate to see this.  I have nothing new to say other than "ditto" to all the previous remarks.  My prayers are with Gracie and your family as you try to get a handle on this. 

So sorry to hear this news about sweet Gracie Doodle.  We will keep a good thought for you and your family Nancie and pray for a good recovery for Gracie.

Nancie, I read this when you posted it and was not able to comment right away sinc I was in shock. My sweet Gracie! As F. wrote, let's just hope for the best, there is really nothing you can do at this point. I'm convinced the medication will work and Gracie will be just fine. Sending you a big doodle hug.

Nancie, thank you for sharing this information about sweet Gracie. I am so sorry that you both have to go thru this, but I am a firm believer in thinking positive thoughts. And that is what I am doing, thinking positive and sending prayers your way - not only for you and Gracie Doodle, but for the Doctors, that they will receive the knowledge and guidance they need to help get her well and back to her old self again real soon. Please keep us posted on how she is doing.

Nancie, I want to scream Nooooooo.  Not our sweet Gracie Doodle, and I can't even imagine John and your's heartbreak at the news.  The hardest part has to be Gracie just not acting herself. 

Please know you are in our thoughts and prayers daily.  She just found her new boyfriend for gosh sake:

He can't wait to come visit her this Fall/Winter and run with her on the beach again!

Stay positive, and yes, like John said, enjoy everyday as it comes! We are here for you, you know you can call me anytime if you want to talk. Love Always~Gina, Buddy and Kona

Nancie, I am so sorry for all that you and Gracie are suffering with this strange diagnosis. Praying the treatment is miraculous and that Gracie recovers completely and never has another bout with this pain. Hugs and doodlekisses from me, Kona and Owen.

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