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]

Nancie, I am so very sorry and upset to hear this about sweet Gracie doodle. I can only imagine how you feel. But the odds, as indicated in the article, are good. So treat her and love her and hope for the best. And above all be patient. It sounds like it is very important to give the whole course of treatment.

[Karen, Jasper and Jackdoodle]

Oh, Nancie, I'm so sorry. I know what a shock it is to get a diagnosis like this. These autoimmune diseases are just horrible, they come out of nowhere and it's so hard to wrap your brain around what the vets are telling you. Denial and disbelief are very normal and common, I've been in denial for the past 6 months over Jack's IBD diagnosis and the lack of explanations or options.It's so hard to see your dog suffering, and so hard to not be able to explain to them what is happening or why there are suddenly things they can't do or have. It is overwhelming and heartbreaking, but you will get through this and so will Gracie.  

One thing that has helped me greatly, and has helped others whose dogs have been diagnosed with serious illnesses, is to join an on-line support group. It's a place to share what you are feeling and what your dog is going through with other people who are feeling the same way and  whose dogs are going through the same things. It's also a place to get information about various treatment options, drugs, side-effects, etc. It was through my support group that I learned about JD's new "miracle" probiotic, among many other helpful things.

Don't pay too much attention to things like that study, they are so small they are meaningless, and they will make you crazy. It took Jane and F Parker about a week to calm me down after I read a similar dire study on IBD.

I'm an old pro with the steroids, JD has been on them now for over 6 months, on a daily basis. All dogs react differently, but I will be happy to reassure you or answer any questions about anything steroid related. Message me any time and I will be here for you.

It just takes time and patience, and a little faith, but things will get better. Gracie will get better.

Hugs to you both, from me and JD. Hang in there, kid.

 

[Nancie & Gracie Doodle]

Thank you Karen...you couldn't have said it any better.  What you are saying is exactly how I feel and my husband too although he is a very positive person where I am weak and cry a lot.  We both just love Gracie so much it is un-explainable!!  Thanks for the encouragement and hugs.

[Adina P]

So sorry she's going through this...and you too.  I certainly have never heard of this either.   I hope she will feel well with treatment. 

[Christine & Camus]

Nancie, I am so sorry to hear that Gracie is so sick and hope that the medication helps her. 

[Nancy, Ned, Clancy, and Charlie]

As you know, Skip and I are devastated by Gracie (our ideal dog)'s illness.  Did the vet feel there was any merit to the obsessive ball chewing and carrying multiple balls around concern? I just want to give her extra hugs as I am sure you are doing already.  Ned and Clancy are sending a hug sandwich to Gracie.

[Nancie & Gracie Doodle]

Nancy...I discussed every option I could grasp as did John.  We told him about different stories friends have told us about their dogs jaws, pinched nerve in neck from too hard a leash pull...(John feels bad because he did one last week).  Gracie is beautifully behaved with me and heels but he lets her pull and isn't the disciplinarian as you know.  Therefore she got a tug which he felt bad about.  Still...after all my "what abouts" the Vet just looked at me and said "you are really trying to not accept this aren't you?"  That is my denial coming through. The ball chewing is not the excuse I was hoping for though I am not going to let her do it any more, even when she is feeling better.  Thanks for the sandwich hug from the boys.  I remember that photo from a few years ago...her BFFS forever!

[F, Calla & Luca]

From what I've read the chewing has absolutely nothing to do with this nor does the leash tug. This is not at all your fault and sadly is just one of those diseases for which we can't explain why it affects one individual dog and not others.

[Karen, Jasper and Jackdoodle]

It's that "Why?" that hung me up, too F, as you know all too well. :) It does take some time to get to the point of accepting that you will never know what caused it and start looking forward instead of backward. But you do get there.

[Jennifer and Jack]

Lots of love and hugs, I am so sorry.. Hoping and praying for the very best and that your sweet girl will be back to herself soon.

[Deanna & Desi & Cori]

Nancie, I'm sending you and Gracie all the positive thoughts I can muster!!  Unfortunately, I'm all too aware of autoimmune diseases as my daughter has MS.  They seem so random and "out of the blue", which makes them harder to deal with!  I agree with Karen - try not to get too concerned about the statistics of the study, especially since the sample size was so small.  Know that all of DK will be sending healing thoughts Gracie's way.

[Nancy, Ned, Clancy, and Charlie]

Gracie was Ned's first real doodle friend.  I remember when they met at the park with the Springers.  I still think what a sight we were with 2 doodles (Mutt and Jeff sizes), 3 springers, and a lab mix!  She was such a good sport to play with pesty Ned.

Gracie was Clancy's first doodle friend (brothers do NOT count). And they met when we had only had him two days and was still un-named (and before he was named for her human brother).  I remember how she tolerated played with him at the car show even though she is such a lady.

Gracie will get through this with the grace that is just -- her.  Even though she has moved on to bigger 'boyfriends' like Buddy, Jackdoodle,  and Monty, Ned and Clancy count themselves among her royal court - as does everybody who meets her.