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Most likely an autoimmune disease

cavalover

Well-known member
Over the last couple of weeks, my husband and I have noticed Butters progressively having more trouble with chewing. At first, I thought he was just trying to swallow his treats too quickly, but he has been having increasing trouble with smaller and smaller treats over the last several days. Yesterday he started having difficulty swallowing water. We found him attempting to drink for several minutes, getting more water on his ears than in his mouth and drooling over his bowl. Needless to say, we made an emergency appointment with the vet.

On our visit to the vet today, Butters could not open his mouth for the exam. I have never had this difficulty with him before, but had noticed at home that he was getting more fussy with brushing his teeth. He also had 2 very swollen mandibular lymph nodes on either side of his neck. The vet pointed out that he has significant localized muscle atrophy around the jaw and temples, something that I had never noticed before. Looking at his pictures, it is difficult to really tell when that started.

He goes tomorrow for additional testing. The major consideration the vet initially had was focal myasthenia gravis. He is planned to have a chest x-ray, basic blood work, and an endoscopy (to look for megaesophagus vs foreign bodies or other possible pathology in the mouth/nose/esophagus) in the morning. However, looking further into his symptoms, I am increasingly worried that he may have masticatory muscle myositis (which Cavaliers are at increased risk for)... especially with the planned endoscopy (I have read that forced manual retraction of the jaw is contraindicated). This possible diagnosis did not come up during our visit today, but he really fits the picture. We plan to discuss this other possibility with the vet in the morning, and hope that we can come to the right diagnosis and treatment plan quickly.

My husband and I are right now absolutely feeling devastated. Butters is still his happy self at the moment, but watching him struggle when he goes to eat and drink is heartbreaking. He is trying so hard, and I can't help but sob watching him struggle. He is so young, at only 1.5 years, and my husband especially is having a rough time (this is his first dog, and they are inseparable).

I guess I am looking for anyone who has additional information/suggestions/feedback, particularly related to our situation and/or the potential diagnosis of MMM. I have read that having preexisting muscle atrophy is consistent with a chronic form, but his presentation otherwise really looks like an acute flair. He has never had symptoms like this before. Anyone have a similar situation, and did your cav improve? worry about the fact that the chronic form, most often identified by atrophy (with associated muscle fibrosis), has a worse prognosis with less likely improvement. What else should we think about discussing with our vet?

Also, we are most likely looking at a period of Butters being on high dose steroids (for MMM he would be on 2mg/kg to start, from my literature search)... and the side effects that go with them. Right now Butters sleeps on the bed. Since urinating in sleep can be an issue, should we start transitioning into a different arrangement? Should we arrange doggie diapers or a waterproof bed to lay on our comforter? What sorts of adjustments should we anticipate and plan for?

Thanks for reading and any feedback
 
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I am so sorry to read this about Butters. Words cannot express the sorrow that I feel for you and your hubby right now. My thoughts and prayers are with you.

I have never heard of the illness that you describe, let alone ever had experience of it with any of my Cavaliers, but I do have a couple of simple suggestions for helping with the giving of water. I think you should try experimenting with putting water into the side of Butters' mouth with either a dosing syringe which you can get from the vet, or if that is too difficult for him to cope with, then drop by drop around the gums with the kind of ear or eye dropper syringe will help.

If you are feeding kibble or biscuit, it might be helpful to soak it in water or gravy first, otherwise a moist tinned food, preferably one intended for puppies might help to keep his strength up, because I would imagine that Butters depletes his stamina and energy levels when he tries so hard to swallow food and water. Hand feeing in tiny amounts might help him too.

Perhaps somebody else here might have some experience of this problem. Others on similar lists may have relevant experience to share with you. If so, I will pleased to pass on anything helpful.
 
I am so sorry to hear your news. Stay strong, and I do hope that someone will be able to help you, no matter how small, every little helps.
Lynne xx
 
Oh...well you know both Mr. Monster and I are big Butters fans and I'm so sorry he is not feeling perfect. I can only guess what a worry this is. I cannot offer any advice however, just take it one step at a time. You did step one you took him to the vet ASAP now do everything you can to help figure this out...you are doing that. Try not to freak out yet you know what people say about webmd-ing yourself:l*v: I know it just about impossible to NOT think the worst especially with our sweet cavaliers but try. As you said for now its pretty happy, try the trick for getting him water that Flo suggested. Please update us as you get more info. I hope someone in CT has some more info for you.
 
I'm so sorry you're going through this. The only thing I can say is that it doesn't sound like megaesophagus. My brother's cavalier has this and she eats just fine but has to be held in an upright position for at least 20 minutes after eating or else everything comes right back up. I hope you have good specialists who will listen to you.

Regarding steroids, Riley started out on 10 mg prednisone a day for several weeks after her SM surgery and then cut back to 5 mg/day for several years, then down to 2.5 mg for about a year and we just weaned her to 1 mg/day. She has never urinated in her sleep and she sleeps in our bed with us also. In total, she's been on prednisone for over 4 years and has never peed in the house. That being said, years ago we had a german shepherd who couldn't tolerate steroids and would pee in the house with one dose of prednisone! I guess every dog is different.

Good luck. We're all rooting for you and sweet little Butters.
 
... I guess I am looking for anyone who has additional information/suggestions/feedback, particularly related to our situation and/or the potential diagnosis of MMM. I have read that having preexisting muscle atrophy is consistent with a chronic form, but his presentation otherwise really looks like an acute flair. He has never had symptoms like this before. Anyone have a similar situation, and did your cav improve? worry about the fact that the chronic form, most often identified by atrophy (with associated muscle fibrosis), has a worse prognosis with less likely improvement. What else should we think about discussing with our vet? ...

About all I know about MMM -- masticatory muscle myositis -- is here: http://cavalierhealth.org/masticatory_muscle_myositis.htm

It is a neuromuscular disease in which the muscles used by the dog to chew – the jaw and temporal muscles, which are called masticatory muscles – are inflamed, and it is painful and difficult or impossible for the dog to open its mouth. It is believed by researchers to be hereditary in the CKCS.

If my dog had it, I would consider alternative treatments by holistic vets.
 
I just want to give my support as you try to figure out exactly what the problem is and the best way to help Butters.
 
Can't directly help at all, but I remember that we had a thread a few months ago on MMM, as someone had a Cavalier with it. Might be worth using the search facility to find it? Meanwhile, thinking of you :hug:

Kate, Oliver and Aled
 
There are many threads about MMM - search for myositis. I've bumped three of them to the top - and there are links to information in some of these threads. You might also want to look at the thread about muscular dystrophy - which you'll also find when you search.

I've known of perhaps 25 cases in Cavaliers over the last 20 years or so; I'd say it is uncommon but the problem does exist in the breed.

My thoughts are with you as you seek a diagnosis and treatment plan. If you are in New York, you hopefully have access to specialists.

Pat
 
Thanks for the replies. It is so nice to have a support community like Cavalier Talk. It certainly eases the pain a bit. Bev – your statements about Riley on prednisone give me so much hope. I really pray that Butters can have a similar successful tolerance. Rod—Thanks for the additional information. I have found those resources to be very useful. Melissa – it warms my heart that you and Mr. Monster enjoy Butters’ stories and photos. It is fun to share his adventures with you :)

Overall, I feel everything went pretty well today. I am really thankful to have a vet whom listens and values my concerns. Last night, she had contacted some specialist colleagues and dug further into her literature after hours. She came to the same conclusion as I, and also strongly feels that Butters fits the clinical picture of masticatory muscle myositis (to my surprise when I walked into the office, that was the first thing she mentioned before I could bring it up!). Before Butters’ work-up started this morning, she and I had a chance to discuss the literature and some of the revisions in his planned work-up for the day.

Butters received numerous blood tests, including a CK level and the 2M antibody test applicable to MMM, as well as other tests intended to rule-out tick-borne diseases and other medical conditions. He received a chest and head X-ray, both of which the radiologist read as normal including no signs of abscesses, tumors, or tooth/jawbone problems. Butters ended up not receiving an endoscopy (his mouth opened only 1.5 inches under anesthesia, and the vet agreed that forced opening of the jaw would potentially be harmful). However, a thorough mouth exam under sedation was performed instead, and he did not have any foreign bodies or other observable problems. The vet was able to watch him swallow, which also was helpful information to show that those muscle groups were working.

The CK and 2M tests had to be sent out (will take about a week for results), but his blood cells, electrolytes, liver enzymes, and kidneys all looked good on the blood tests. Since there is such a high suspicion at this point for MMM, Butters was started on Prednisone 10mg daily, which will be continued for at least 3-4 weeks. He will then be reevaluated (unless there is a problem before) to see the effectiveness of his treatment, and may be slowly tapered from there.

My husband and I feel very fortunate that we at least had him checked out while he still has some intact jaw function. Based on the progression of Butters’ symptoms, the vet feels that he likely has the chronic form of MMM. Looking back at his photos, I can see some signs of atrophy all the way back to around 7 months old. The vet reinforced that in the chronic form, it can be less responsive to therapy because the muscles can become completely fibrosed (full of scar tissue). However, she is hopeful that his function will improve with therapy. Apparently, there are many dogs that present at a point where they have lost a great deal of weight and have little or no function of their jaws. Some require tube feeding. Their fibrosis is likely more extensive. At this point, Butters can still continue on his present diet, which he is able to tolerate although with some difficulty. He can still drink water on his own, but it takes him a long time and we will keep close eye on him. We will just have to wait and see how he responds…
 
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We have had a couple of owners with this on the board here over the years. I've also talked about this in the past with neurologist Dr Clare Rusbridge over in the UK. She and some others have said they tend to only see such early presentation of this problem in cavaliers. Steroids are really the only option and without giving them, I understand most dogs will eventually die of this or live a very difficult life, as their jaws lock. My understanding is the earlier steroids are started the better and that for some dogs, once a cycle of them is done, that's it -- the dog does not remain on them permanently. I understand that is in contrast to the other type which your vet first suggested -- which has to be managed over a lifetime. I had friends with a german shepherd with that. This is just off the top of my head from discussions some time past so don't take that as gospel. Hopefully Butters doesn't have a chronic case needing longterm treatment. I do know some cavaliers have definitely improved quite a bit after steroids were started -- so we all will have this hope for Butters! :flwr: I've come across those cases from owners on other lists many years back with young dogs treated for this. So they are personal, positive stories. :)

Steroids affect different dogs (and people!)in different ways. They are a 'miracle drug' but with potentially serious side effects. The serious side effects almost always come from chronic long term use -- and still are not a certainty but a possibility. Often steroids are the only, or the best, option. Often the alternative is a hideous quality of life, the risk of death, or the risk of very serious complications if NOT used. I can testify to this because over the past two years, I fell into the first and last categories :) -- so have a respect for steroids when used correctly and when needed, and also -- had no side effects. And will be going off them very soon.

There are two concerns with the use of steroids in vet medicine, from my perspective. One is that vets and specialists overuse them because they bring swift results, which makes owners happy and/or saves more involved investigation and a more nuanced treatment programme. The other is that owners are incorrectly fearful of using steroids when they are truly not only the best option but may be the only lifesaving option or the one that will quickly bring the fastest pain relief to a very painful dog.

In general: fast tapers of steroids (start high, quickly dropping dose, typical for injury) for acute pain rarely have many side effects and most are trivial and pass quickly. Longer term treatment at low doses may or may not have side effects. Long or medium term treatment at higher doses is the higher risk category for side effects with weight gain being one but also potentially diabetes and some other serious problems. Over a dog's shorter lifespan (compared to a human on this drug) there may never be significant side effects. For some dogs, steroids at higher or medium doses may be the only option. So: using steroids is not a blanket evil or negative. Nor should it be a casual choice. It's best to understand how they will be used, for how long, and ask about options and possible side effects. I would never advise anyone to abandon steroids on the basis of feeling fearful of them. Many of us would like other options (for ourselves or our dogs) but for many of us there are few other options and some of the other options have their own problems. (y)

It sounds like your vet is doing very thorough research into this. Rod and Pat have given some good info/links.
 
Thanks for your comments, Karlin. Your feedback about prednisone and MMM were especially helpful, in addition to the great advice from other posters.

As an update, Butters has had significant improvement since starting the prednisone last week. He has been able to open his mouth a little more each day, and his eating and drinking have significantly improved during this time. Now he is able to chew his kibble again! He does appear to have a little more atrophy of his jaw muscles since starting, but we were told that may happen. However, the key thing is that his functioning has improved greatly, which gives us much hope regarding a positive prognosis.

In terms of side effects from the prednisone, the only really notable one thus far is nausea, particularly in the morning. He still eats like a champ, but will have some drooling and retching after eating breakfast. He has only vomited once, but my husband and I think that was most likely due to us giving him his monthly heart worm treatment in the midst of him already feeling sick from the prednisone (the heart worm treatment tends to give him the same nausea symptoms on its own). At this point, he is not drinking or urinating more than usual or exhibiting any other problematic symptoms. He otherwise is his happy, loving self.

The following are a couple photos that I took with my phone when he returned home from the vet. It gives an idea of his signs of atrophy, which my husband and I did not pick up on prior to his diagnosis. Maybe it will help someone else in the future.


Butters by LSidari, on Flickr


Butters by LSidari, on Flickr


And, this one is just to him being his cute self, with the attractive poodle leg trim he earned as a souvenir from the vet trip :) I love him so much, and am thankful to see him getting better


Butters being cute after his trip to the vet by LSidari, on Flickr
 
Our vet confirmed today... elevated CK and 2M antibody consistent with Masticatory Muscle Myositis. I feel relieved to know that we have the correct diagnosis, and that he is getting the correct treatment.
 
Though Masticatory Muscle Myositis isn't what anyone wants to hear, it is a good thing that you do have a diagnosis and now can focus on the correct treatment.

The pictures of Butters are adorable, poodle leg and all!
 
Sounds like you have found yourself an amazing vet!!! I'm so glad to hear Butters is doing better already and that you have an answer it is MMM. I prey he only gets better and the bit of yucky tummy goes away soon.
 
I bet you are feeling so relieved to get a diagnosis at last. Butters looks absolutely adorable and oh so pretty. Thank you for sharing.

Keep in touch please I for one would like to learn more about this disease and how much difference the medication makes. I am so glad to hear of such a big improvement.
 
So sorry to hear all this, but glad you have an answer that you can address.

You mentioned the atrophy, and the pictures, but am I missing something, I don't see it?

Give that sweet face a kiss for me!
 
Hi Cindy,
I never noticed the atrophy until my vet pointed it out, and it is pretty hard to tell unless you are specifically looking for it. The second picture in my earlier post shows his bony cheekbone, which is a result of muscle atrophy around the jaw. It is easier to tell in person, because you can feel when you pet him that there really isn't much muscle above and below the cheekbone. The longer hair of the cavaliers makes it more difficult to see than in other dogs, like labs. Looking back at his old pictures, you can see how his face went from having a flat profile (no cheekbones sticking out) to what it is now. Still, it is hard to tell unless you are looking specifically at the cheekbone area


IQ7R1387 by LSidari, on Flickr


IQ7R3719 by LSidari, on Flickr

He, of course, is still my beautiful boy and always will be. None of our friends notice any difference, and always comment on how beautiful and loving he is. He has been doing so well with the prednisone, and we are heading into the 3rd week :) Yesterday, he picked up a bone from his dog bed for the first time in months. He is also now chewing his kibble instead of simply swallowing it whole. Our vet increased the prednisone to 10mg twice a day (instead of once per day) last week, after reading that this level might be more effective in the long term at fully stopping the disease process to help preserve the muscle he has left and prevent a relapse. He is continuing to be a bit nauseous, but that at least has not gotten worse with the change in dose. We will have his CK level (marker for muscle breakdown) checked in another couple weeks to see if the blood tests agree that he is responding well. But, the key thing that makes my vet, my husband, and I feel really great is his tremendous functional improvement. I am glad we caught it in time, even though it took us a little while to realize what was going on.
 
I'm so glad Butters is responding so well. The photo with the roses is lovely (even if the other one may mean more to you - yay, he's getting back to normal!) - think you should offer it to Cavalier Matters for a card! Or put it in for next year's calendar.

Kate, Oliver and Aled
 
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