New member Fudge paralysed tongue

[FudgeKelly]

Hello everyone, our little girl Fudge is nearly 2 and a real live wire sprocker spaniel.  A couple of weeks ago she developed some lameness in her back legs.  The vet did all the expected tests but all came back clear. Last week Fudge started to struggle to eat so back to the vet. From there things haven't gone so well and she's now in the Dick Vetinary Hospital Edinburgh. She's having to be fed by tube into her tummy because she was regurgitating a bit and that created the risk of pneumonia. Apart from the paralysed tongue she seems completely healthy fit and happy in all respects. She's had blood tests, a lumbar puncture, biopsy, nerve tests and a CT scan but so far everything looks clear. We're baffled, the vets are still trying to find a cause but meanwhile our little Fudge keeps on wagging her tail while we are all worried sick. It's still early days I know but has anyone got any similar experiences or advice? In the meantime I just want to wish all the very best to every poor little dog who is having a hard time at the moment and pray that if there is a God he/she stops letting our little friends go through the wringer.

[Jo CIMDA]

Hi and welcome.

I am sorry your Fudge is having these problems.  It sounds very like an autoimmune muscle condition that may have caused megaoesophagus (MegaO) and lameness.

It may possibly be polymyositis which can include masticatory muscle myositis and megaO   

http://vetspecialists.co.uk/factsheets/Neurology_Facts/Myositis.html

or

Myasthenia gravis is an AI disease that affects the nerves that controls the muscles and it can also produce Mega O

http://vetspecialists.co.uk/factsheets/Neurology_Facts/Myasthenia_Gravis.html

I have known the initial diagnostic tests to come back inconclusive in dogs with polymyositis and MG and it is not until some time later, as the disease progresses, that a confirmed diagnosis can be made.   By this time though, the muscle weakness increases. 

These AI diseases are treated by significantly suppressing the immune system to stop the immune destruction.  In general inflammatory immune diseases are treated using immunosuppressive doses of steroids, usually prednisolone,  but because one of the side effects of steroids is muscle weakness the vet will usually treat an AI  disease of this nature with  a combination of drugs such as prednisolone and one or more of: mycophenolate, Cyclosporin, leflunomide and many others.......

One thing for sure the immune destruction needs to be halted, and sometimes, even if a diagnosis cannot be confirmed speculative immunosuppressive treatment has to start to prevent further damage.  I do hope the vets will make a decision to treat asap.   

I wish Fudge well and thank you for your good wishes and prayers for all the other dogs going through a similar situation.

Jo

[FudgeKelly]

Thank you for giving us the benefit of your knowledge on this.  Today they started treating Fudge with cyclosporine as you suggested and although they still have no confirming results they believe it is an auto immune system problem. She's also getting some pro kinetic drugs to help prevent any regurgitation. Fudge is a proper little fighter and apparently is coping really well with the drugs and the liquid food through a tube into her throat. Dogs never cease to amaze me how stoic and resilient they are despite the fact that us owners think they are helpless little fur babies. It puts us humans to shame really. Despite all that there is a fighting chance that if Fudge remains stable and tolerates the food and medicine over the next couple of days then she may be home by the weekend for us to carry on with  the feeding regime and looking for signs of recovery. Fingers crossed.  For anyone reading  this post, take note that the views given by Jo were exactly spot on despite never having seen or heard of our situation before and that should give huge confidence in the value of this forum.  I hope little Fudge pulls through but I hope equally that all the other furry friends get an equally lucky break too. Thank you for his forum which just gives a chance to know that it's not just us who is facing such problems.

[Jo CIMDA]

Thank you for the update.  I hope you see and improvement in Fudge, and she will be home with you very soon.

Jo

[FudgeKelly]

Fudge came home on Friday with a bundle of medicine and a feeding tube in her neck.  As well as the cyclosporine she's taking Gabapentin, antibiotics, paracetamol and an antacid/prokenetic.  The diagnosis is still really uncertain but she's being treated for autoimmune system illness and for the very slim possibility that she has an infection called Toxoplasma.  She is on a high calorie liquid food (Royal Canin G1 1.5kcal) which goes through her tube 4 times a day with water for hydration through the tube between the meals. We check her breathing through the day to be sure there is no sign of aspiration pneumonia.   She is feeling a bit sorry for herself (understandably) but that's because she doesn't like being fussed with.  Apart from that she seems perfectly normal.  We aren't sure if we are on the way to her being fully recovered yet (there are still no real tongue movements) but she isn't getting worse and she's getting all the treatment they can think of.  Fingers crossed.  She'll be getting checked by our local vet on MOnday and then back to Edinburgh Vet Hospital on Thursday to see how things are progressing.  We'll keep you updated because someone might benefit from our experiences.  Good luck to all the dogs whose owners are worrying. 

[Jo CIMDA]

Hi

That is good news.   I bet Fudge is so happy to be back home.

Thank you for sharing this with us because as you say it may be useful to others. 

I do hope Fudge continues to feel well and hopefully this problem will soon resolve.

Jo

[FudgeKelly]

It's been a month now since Fudge came home.  I can't deny it's been hard work coping with 3 liquid feeds through the throat tube every day plus water through the tube in between feeds.  There have been just a couple of hours between syringe sessions so really it's been a full time job between 8am and 10pm.  So folk can understand the commitment if they are unlucky enough to face this, the total cost has been about £6000 but we've been lucky enough to have been able to do that.  Throughout it we have had fabulous support from the Dick Veterinary Hospital in Edinburgh and our local vet.  We were beginning to lose hope to be honest because however much liquid food she got, Fudge was still losing/not gaining weight.  It seemed tragic because in absolutely every other respect she was fine: just the tongue wouldn't work and she was acting like a starving dog.  To try to alleviate her boredom and encourage her to use her mouth we gave her a rawhide chew and she was gnawing away on it very happily.  She was doing lots of drooling (she couldn't swallow) but we realised that somehow the chew was disappearing.  We kept a very close eye on her breathing to check she wasn't inhaling any of it.  All seemed good.  Just over a week ago we spotted her eating rabbit droppings in the garden (charming Sprocker that she is!) and realised she had somehow learned to pick up pellets without her tongue.  We then gave her a very small amount of kibble and blow me she scoffed the lot.  We went back to the Dick Hospital for the planned review and they were a bit amazed, slightly sceptical but also, like us, delighted that progress might be coming.  They checked her lungs and all the 'vitals' and took her away for an hour to test it for themselves with some chunky biscuits.  Again she scoffed the lot!!.  So this last week Fudge has been on the liquid food with 3 small meals of kibble and chicken as dessert and has been dancing with joy.  From today she is on solid food only and on Tuesday the tube comes out.  Amazing, incredible and fabulous.  The steroids and cyclavance and antibiotics are now being given hidden in the chicken bits and because she's a typical greedy spaniel they go down the hatch without a second thought.  She is slurping from the water bowl and has learned to drink by having a water bottle dribbled into her mouth.  Today for the first time since January she stuck her tongue out and licked her nose after having scrounged a piece of toast.  So it seems our troubles might be coming to an end.  I'm sure the drugs have helped but I also think that she has learned to work round her 'disability' in her quest for food because she doesn't eat or drink exactly like a normal dog but she is still finding a way to do it.  The vets are saying that, even at a neurology conference in Edinburgh, nobody had any ideas as to how to diagnose EXACTLY why or how her tongue was so specifically affected because none of them had seen or heard of it before and the vets are equally amazed that she seems to have started recovering as mysteriously as she became 'ill'.  The important thing is that progress is being made at a good rate of knots.  We expect she will stay on the medication for another couple of months including any weaning period to get her drug free.  I'll update the forum in a few weeks when we expect she'll be back to normal in almost every respect (not counting our chickens fully yet however!!).  It's been difficult so far and not everyone is lucky enough to be able to do what we (my wife mostly) has been able to do but I just want people to know that however hopeless it might seem (and believe me there were days when we thought there was no hope), recovery is possible as far as we can see.  I will happily answer any questions on our experience to help others who might be having worries or problems in facing up to this.  In the meantime my heart and best wishes go out to anyone and any animal having a hard time and I'm rooting for you all just as we are rooting for our bouncy little Fudge. 

[Jo CIMDA]

Hi

This is wonderful news. Fudge must be a real toughie to have come through this, and not only has she coped with all that is wrong but things seem to have turned a corner.  Well done to you too,  and Edinburgh Vet College. 

The story of Fudge is truly amazing and I have never heard of this either.  Can you please tell me what other body systems, if any, are involved and although the vets have not definitively diagnosed it, what are their suspicions?  Is it just her tongue that is, or rather was, paralysed or was/is her oesophagus also affected?  The other amazing fact is it seems this problem is being reversed and I don't think anyone could have expected that.

Please forgive all the questions but I would love to learn more about Fudge and her condition too.

Perhaps you could post her story in a separate section for all who search about myositis/neurological and other related AI diseases to read.

Thank you so much for this update.  It is so encouraging for others who may find themselves in a similar situation.

Tuesday will be a milestone.

Jo

[FudgeKelly]

Hi Jo

First off I'd be only too happy to post details in another section.  I'm not a social media/forum user type of person so forgive me but any suggestions on which section to post on?

To answer your specific questions, although initially they thought her oesophagus was affected they couldn't actually see how because she had a sort of clumsy gag reflex.  They just drew the assumption that it was probably the whole throat to minimise the risk of her inhaling food.  So the end result is pretty much only her tongue (and principally the front part) is/was affected.  Initially she had mysterious bumps appear on her hip, then cheek and then nose almost like something was travelling up her body but again that was never explicable.  After all the tests and scans the vets (who incidentally were utterly fabulous with us) concluded it was probably Cranial nerves 9 and 12 but there were no glaringly obvious signs of infection on the scans and that it was an immune mediated illness.  There have been minor and inconclusive test results on all sorts of factors including marginally increased white blood cell counts, slightly high temperature (103 deg F) and a trace of infection from Toxoplasma or Neospora but the readings were apparently inconclusive to the extent that the team couldn't quite agree.  So all in all a bit of a mystery.  We always thought she was a special little girl (doesn't every owner?) but we didn't quite realise that any potential ailments would also be uniquely special!!! 
When I write up the full story I'll include all the medical stuff (gobbledegook to me!) just in case it's useful to you or someone else.  All I know is that we are delighted that Fudge is on the mend for now and fingers crossed she continues like that until she's back racing after rabbits and birds in the woods. 
Tony

[Jo CIMDA]

Hi Tony

You may find this link very interesting:

http://journals.sagepub.com/doi/pdf/10.1177/104063871002200605   

The Paper is entitled:  Inflammatory myopathy with severe tongue atrophy in
Pembroke Welsh Corgi dogs

I have made a specific section for Neurological and neuromuscular immune mediated disease. 

If you go to the front page and click on:
Systemic / Inflammatory (AIHA, IMTP, Evans, SLE, IMPA, SRMA)

You will see 'Neurological and neuromuscular immune mediated disease' 

Click on that and you can reply to the post I have just made.  Alternatively you can make up your own heading on the front page.  If you look to the top of the page you can see 'New Topic'.

Many thanks 

Jo