Hi

I am new to this site following a search to find a group i could chat to about my dog.  Hopefully this will make it easier talking and maybe get some advice cause we are at our wits end and returning to a referral centre on Monday and worry what the next step is going to be.

To explain further about our dog I have to take you back to four weeks ago when we returned from cyprus.

A family member looked after our Foxy (a 2year old female german shepherd) for a week and we had a phone call to say she had a fall. When I picked her up she had limp and obvious issue with her left hind leg. I took her straight the the vets the next day and he diagnosed her with a partial tear of the Crushia (sp?) ligament in her knee and sent her away with Metacam for the pain and inflamation and we were told to rest her.

Over the next week she was unstready and weak on her back leg but her limp had gone probably due to it being easier to walk on while on the medication.   I had a call with the vet and he adviced to wait a bit longer for the knee to repair and keep her rested. We restricted her to downstairs and only walking to go to the toilet.  She was very unsteady on that side (wobbly), came across quite drunk looking and kept falling over still after a week. I was not happy at all and worrying as to why she was still like this.  She was off her food and came accross quite depressesed. She also was having more problems toileting.

The following Monday (23rd June) she did not want to get up at all and had no energy. When we stood her she just flopped down.  I knew there was something definately more wrong with her and took her to the vet.  He examined her and looked at her knee and he seemed to think that that this was better now as it was fixed and her problem was more neurological.  He was so worried about her he took her in stright away  put a drip in and carried out various tests the next day - bloods, x-rays etc. 

We got a phone call and he advised nothing had showed up in the bloods/x-rays etc and he definately thought she had a neurological problem.  He referred her to North Kent Referrals who have specialists in spinal and neuroscience and she was booked in for the next day.  He kept her in the vet surgery because she could not toilet and to keep her hydrated as she was not drinking or eating by that point.

The next day I took her to North Kent referrals and they ruled out any acute spinal/bone problems.  The Neurologist assessed her and confirmed that it was more like a neurological problem, maybe caused by disease or meningities and she should be admiitted to do further tests - Spinal tap/MRI etc. 

The next day she had the spinal tap and after lengthy testing of the fluids he diagnosedLymphatic Meningitis.  I was so relieved that they had diagnosed this and striaght away looked on the internet to get more info.  Paul, the Neurologist, said they would start the usual treatment straight away and I was very hopeful she would pull though.  The internet said that steriods can be used to treat dogs and they are very responsive to these.

Over the weekend we went into visit her and each day she made slight improvements.  Her neck was not so stiff and she was looking around and she had started to kick her legs when they gave her a bed bath.

However in Pauls eyes on the following Monday ''she should made more improvement by now''.  Dogs should show some good improvements within 72hrs of starting the imuno drugs. 

I had to go up Birmngham last tuesday and wednesday with work and was so stressed and worried by the situation but was in close contact with Paul at North Kent. 

They were sure by now that she had multiple areas of the central nervous system affected and ruled out any cancer or 'bug' that may of caused it.  A day or so later he said she had GME (Granulomatous meningoencephalomyelitis) which is more difficult to treat and not always responsive to treatment and the prognosis was not good. 

I must say she was very well in her self while in the referral centre.   Foxy is a very intelligent dog and was strong enough now to look around but she could not walk at all. Her back legs are were weak as she has lost muscle tone.  While there she was having Physio and also had a Catheta as she was incontinent.

Paul told me it would be best for her to come home so last wednesday (2nd July) when I returned from birmingham we brought her back.  The reason was that they had completed all the tests and was on treatment.  Just as long as we can nurse and look after her he thought that if she was going to make any significant improvement it would be at home in familiar surroundings and the encouragement from us. 

Since being at home she has just stayed the same really but not got worse though.  She is on Prednisolone (25mg), Clavaseptin (500mg) and finished a course of Cytotec (200mgs) on Friday.  She is also taking a liquid oral drug called Neoral Oral Solution which I believe is CYCLOSPORINE which she hates and smells like nail varnish but shortly after taking she seems to want to get up and on two occassions she got up and taken a few steps but then falls down. This drug I have heard s very strong and supposed to stimulate the dog to walk.  It seems to do something to the meningitis but I must say after trying to assist her walking a few times in the day she is so tired after and sleeps the rest of the day.

I am taking Foxy back to North Kent on Monday and am worried what Paul may say.  Its been over a week now since she has been on all the various drugs and she is not back up walking again.

She is not in any pain but like any dog owner don't want to prolong things too long. But also like any dogs owner we want to try everything to save her from this awlful condition. She deserves so much as she had such a bad start in life (we rescued her) and don't want to give up!!

I am crying as I write this because we had another German Shepherd dog called Jess who took Foxy under her wing a year ago when we rescued Foxy.  Jess was 8 years old and mothered Foxy who was mistreated by her previous owner who died.  Jess and Foxy we so mischievous together running off looking for rabbits together in the meadow behind were we live.  Jess used to boss Foxy around.  Then two months ago after having the two dogs for over a year Jess died suddenly.  It was so quite in the house!! 

Anyway, until we find out what has caused Foxy's GME we won't know if its related to Jess's illness but the vets seem to think its not.   Unfortuantely we did not have a post mortum of Jess cause we did not want her proded about but maybe we should of.  We are now awaiting some further test being done in the UK and America to see if they can pin point the cause of her GME but we may never know.

The reason for us willing Foxy to get better is because we have already lost Jess.  As I said Foxy had a bad start in life and only really started to become her own personality recently.  Its so weird I feel like I am nursing my own child and don't want to loose her!

Does anyone out the experience GME and know of any other successful treatments further to what we have had already.  Has your dog had/got GME and what do you know?  I know that Paul will be able to advise on other treatments for the next week or so but it would be good to hear some real life situations and maybe a success story to keep us positive!!  

We are really at last chance saloon and dont want to give up on our Foxy!!!

Regards,

Adam

I have no experience of this condition at all but just wanted to say how sorry I am that you and Foxy are going through such a dreadful time. Am keeping my fingers crossed for her and wishing you strength and courage during this difficult time.

I am really feeling for you and Foxy

I had a similar issue with my girl recently (if someone can link the thread?? or just search my posts)

Luckily we had meningitis discounted, and they think it was a spinal stroke from which my girl shows no symtoms at all now, but I think in the thread somebody mentioned GME - and I know the breeder of my girl had another dog which did have GME (it is not believed to be hereditary and the other dog was not directly linked to mine)

I'm sure someone will come along who has info, gentle hugs for your girl from me and Leah

:)

http://www.champdogsforum.co.uk/cgi-bin/board/topic_show.pl?pid=935371;hl=#pid935371

thanks for your thoughts Harley
adam x

dearlady
thanks. i actually read the thread regarding your little girl. advice from others was great but seems to be what Foxy is on at the moment. maybe someone has had experience of these drugs not working and thoughts of others like Leflunomide or Azathioprine which seem to be used when the Predisonsoline etc don't seem to be doing much.
thanks for your copy of the thread Lea.
kind regards
adam & Foxy

Hallo Adam. How sorry i was to read your post. I can tell you my girls storey which i hope may give you some hope.
My girl JRTxwestie, 7yrs old now. Ive had her 2 1/2 yrs now, but it seems most of that time she's been ill with one thing after another, to the point that im sure the vets thought i was an absolute nut. She'd shown abdominal pain so bad she was admitted for a week, and looked so bad they didn't think she'd make it. Then there was a time she was lame, very stiff and painful in her back/spine. Then plenty of times i knew ther was something wrong.  Never was a real diagnosis given. Then last June, she was sitting in the garden with me, on a bright sunny day, & i noticed her pupils were fully dilated & there was no reaction. I took her to vet the next day who confirmed she was blind. I was totally devestated. She was refered to Davies veterinary Specialists at Higham Gobion. After a spinal tap & MRI they said it was meningoencephalitis/myelytis.ie GME. She was started immediately on their protacol  for GME. That is high dose prednisolone, tailing off over about 7months. Plus subcutaneous injections of cytosine= 4 injections 12hourly for 2 days. It starts every 3wks x4, every 4wks x4, every 5wks x4, every 6wks x4 then stop. These are done by my own vet. She's now got only 2 more cycles to have. I can't believe it's nearly over. When they first said 16 mths of treatment i thought i couldn't do it. But here we are nearly finished. The vets can't say what will happen when the treatment stops but i pray she wont relapse. If she does she may have to stay on the cytosine. She wont regain her sight but is totally happy. She's now perky & bright . Is behaving the way a dog should & i now think some of her previous problems were related to the GME brewing.
I can not praise Davies's highly enough. They are all RCVS specialists & totally on the ball about all the latest treatments.
So Adam. This is our tale. I do hope it gives you some hope. GME used to be fatal but with these new treatments there is a future. I've done a lot of research about GME. I look at my girl now & i realise just how ill she was prior to all this.
I wish you all the best. Don't loose heart. Its serious but there is light at the end of the tunnel.
Let us know how Foxy goes.
Best Wishes

Hi
thanks for your reply 'Peanut'
foxy is on prednisoline but not Cytosine injections but other drugs as mention before.
i am going back to the referral centre tomorrow and feel a bit more positive following reading your story. and also cause today with encouragement, Foxy has been pushing on her front legs and taking a few steps but cause her back legs are so weak then falling down. we are both encourageing her and then praising with treats. Its only a few steps each time but hopefully as the week progresses she may get stronger.
am going to discuss with Paul why she is not on Cytosine injections and also mention the others I have found out to try if the usual steriods fail.  maybe the drugs are working but cause her back legs are weak (its over two weeks since she stopped walking)??
she seems to be getting stronger each day and god her appitite is back to normal. She really has come out of herself today and seems much brighter.
Not sure what he is going to say cause she moves her back legs but stronger on her left side.  is this ever going to come back or is this cause her muscles are weak and maybe with continuing the work we are doing - small steps each day she will be able to stand and walk again.
oh well, we'll see what happens tomorrow.
thanks
Adam & Foxy

oh, did your dog ever stop walking?
thanks
adam

Hi Adam. No my girl didn't stop walking. Hers is the optic & multi focal type. The prognosis for multi focal is not good, presumably thats why her treatment is for so long. She did however have front lamness & spinal pain some months back.
This is such a specialist disease i do believe it needs a neurologist that specialises in it. Its an immune mediated disease the cause of which is not really known. Its most prevelent in small middle aged terrier bitch types,  tho it can of course affect any breed. The standard treatment at the mo is prednisolone together with one of the chemotherapy drugs ie-cytarabine(cytosine), cyclosporine, etc etc. The idea is to put it into a state of remission, a bit like malignancy control. Some dogs relapse when the drugs stop, others remain in remision.
How did it go with your vet today?
Hope Foxy continues to improve. Do keep us posted how she goes. For me its good to have contact with someone in the same predicament as i am.
regards

PS= There's a top GME specialist in Boston USA. His name is Allen Sissons at the Angell Animal Medical Centre, Boston. You could e-mail him if you want. Apparently he's very responsive & helpful. asisson@mspca.org. Just a thought for you!
I didn't know North Kent Referrals had a neuologist. Thought "Paul" was an internal medicine specialist, but i may be wrong of course. You could look on their website.
Good Luck

My sentiments my Dax was referred to Davies absolutely marvelouse hospital,and so commited .cant praise them enough hope your dog is doing well now .My one is up and walking now ,and back to normal,which back in April we thought she wasn't going to walk again.Good luck Dachmad.

Has your vet suggested using a sling ,just a thought we used ,one on our dax just for toileting trips to the garden 2 or 3 times a day,after her disc operation.Good luck Gwen

no advise etc for you adam, just wanted to say i'm so sorry for what you and your girl are going through, hope she improves soon

Hi Adam, Any news on Foxy ?

Adam. Been watching for news of Foxy. Do hope alls ok. Let us know eh.

Hi All,

thanks for all the messages and advice. its been a very hectic week and have not had anytime to post anything until now.  we are both back at work and our little Foxy has stayed at our dog walkers during the day. she has been fantastic.  she knows so much about dogs and has been so energetic like us to get Foxy on the right track to recovery. Luckily she does not work and has been carrying on our hard work with exercises - standing ,sitting and helping her to try to walk and giving her her meds each day. we are so lucky to have someone to have her while we are at work as we are both unable to take anymore time off. Its quite stressful, glad its the weekend now, early starts to get Foxy to her house and then drive into London where we work. We live in Kent so its an hour drive into London so as you can expect its been quite a tiring time.

Monday - well we went back to North Kent to see Paul.  Well I think I have been wrong in calling him a Neorologist.  I think I got confused because he he kept talking to us saying GME was a neurological problem.  I think in fact (like Dachmand said) he is experienced in internal medicine.  He has come across GME before though and know his stuff so we are more than happy with everything he has done so far.  I will however contact that guy in the US to see that we are on the right course.

I updated Paul on how she was doing.  Up to Monday like I posted before she was getting better each day. She seemed to recognize when she was going to the toilet on her bed and pushing herself away from it.  She had become a lot stronger on her front legs especially left side but her right hind leg is quite week.  Paul said this was muscle atrophy and nerve damage. with the exercises we are doing - standing, sitting etc the muscle strength should come back but we will have to see if her nerves repair but he is hopeful as this does happen. He confirmed (not sure if I had mentioned before) that she was still blind in her right eye. He said she has generalize GME but also cause it has affected her right eye is was Oricular as well.  We agreed to continue her on the Prednisoline and also the Neoral Solution (Cyclosporin) as she, even though slow, is making improvements. We are now giving her a sligher lower does of prednisoline and we may do the same with the Cyclosporin if she improves more. He did say however when we go back in two weeks if she has not made any significant improvement i.e not back up and walking, then we may alter her treatment and even try another drug as here are many others.   We are though going to go to Hydrotherapy which will help with strengthen her muscles.  We must remember the drugs are working on the GME but cause she has not walked for so long her muscles were very week when she returned home.

Since going back for the apointment on Monday she has improved even more.  Not back up and walking yet but when she is lying down and you say 'come on - lets go' like as to go for a walk she pushes up on her hind legs if you position them for her and stands. If you get there and support her a little she stands for quite a while.  Day by day she is standing longer so the persistance is working.  If assisted (with or without harness) she even now takes a few steps.  As said before she is stronger on her left side so moves her front left leg forward and hind left leg forward very easily but the issue is she drags her right limbs. But dragging at the moment is a fast improvement cause before she just flopped down when any weight went through her right side.   I am hoping the nerves are repairing and the small movements we are now getting are evidence of that!!!.   Remember when she came out of the referral centre she could not even stand on her hind legs let alone move them which she is doing now.  Each day she has her food and meds and at various times we practise her standing, sitting and try walking with assistance.  You can see her look up with excitement while you encourage her to do it.  She is a very inteligent german shephard and I think she knows whats going on.  In this respect its very easy for her to get down with this and you can see her sometimes getting a bit depressed so we are always giving her lots of attention and praise.

Foxy has also become much more responsive, she is very happy and you don't even notice she has any problems when she is lying there. We have made a special bed for her out of foam with a baby plastic (incontinence) cover over the top.  We kept getting through so many puppy pads each day its so much easier.

She does get very fustrated though cause you can see her little face looking up a you when we try walking and then she looks at her back right leg and thinks ''why is my right leg not moving as much?''

Anyway,  will keep you posted on her progress. we are so lucky that we have been able to put the time in. like Paul has said a lot of people in this situation would of chose Euthanasia for this rare condition but we are so glad that we doing this even though its hard work.

Regards,

Adam

well done for sticking at it. i'm glad you've got so much support from your dog walker and your vet team. best of luck and hope that she keeps improving, gentle hugs for foxy

i have emailed Allen Sissons (US) who is an expert to see if there is anything else we could be doing.
Foxy is totally crashed - the physion and meds are totally wacking her out but she has done so well today. i have managed to get her standing with help, let go and she stays standing for about 40 seconds now.  We have to distract her infront getting her to take her mind of it but she carrys on standing - we will keep on persisting.  i knew my experience of working with children with brain injury would come in handy some day......
regards,
adam

I am so glad things are improving I know my Daxis back problem was a little different to foxies problems but seems the recovery regime is simular ,all I can say is keep up the physio ,and slowly but surely she will make it,every time I did her physio I was willing her please get up and walk again.I had a good sitter too, who did all her physio when I had to go to workTilly had her op 18 April and I can say that its probably 2 weeks ago that I could see she was back to normal.Its been a long haul but we made it.I wish you and Foxy good luck and Foxy you can do it.We also have a GSD.Sending positive thoughts.Gwen

thanks gwen
its a beutiful day today which makes things easlier.
am encouraged that you came out the other side with Daxis. am slightly worried about her right side as her left side is a lot stronger.  as you say we hope to get there in the end but may take a few months.
regards,
adam

Hi Adam. I'm so pleased Foxy seems to be doing well. It's hard work, i know from experience with my girl, but well worth it. How long is Foxy's treatment for? It's so interesting for me hearing of anothers occular & multifocal GME & to read of their treatment. Multifocal has a fair to guarded prognosis but here's my girl over a year on. I do presume when you said she had generalised GME it was the multifocal ?
Also please let me know if Allan Sisson does reply & what he advises. It might help my girl too.
Very best wishes. Keep up the good work.
Su

Hallo Adam. Any news then? Another week over & i expect you're grateful for the weekend. Hows Foxy doing & did Allen Sissons reply to your contact?
I hope all is well !

Su
Oh yes I am so glad for the weekend.  I am so busy at work at the moment and taking Foxy to our friends during the day means an even earlier start that usual.
Foxy has done very well this week.  Getting stronger and stronger.
She can stand up on her own (before we had position her back legs for her and pull her up).  Over the course of this week she has been taking more and more steps. A week or so ago I was still very concern that she would not walk again cause of her back legs failing but we are so encouraged by what she has done this week.
Also.....on thursday our dog walker showed us something.  When we picked her up she said she had been spraying Foxy with a bit of water and Foxy has been getting up and walking quickly away.  Her legs eventually give way cause they still need to get stronger but it was amazing to see.  All three of us laughed cause we think that the past week or so she can actually do more than we think and has been 'pulling the wool over our eyes'. Dogs are very funning animals and a GSH very intelligent.  We think, even though she has been very unwell, she has been playing on it slightly and she has always been a bit of a lazy dog.  With trying the water (which she hates) she gets up and runs away - we could not believe it.  My partner has been telling her to get up all the time in the garden and getting her to walk all of yesterday and I have been doing the same today.  She needs so much encrouragement as she used to be a nervous dog but she is very lazy!!  So....all in all things are very encouraging - she can get up on her own, stand for a long while and walk much better than before. Remember two weeks ago when we went back to North Kent Referrals she was stetchered in.  On Monday she will be able to walk in herself eventhough a bit wobbly! 
Oh, yes, I did email Allen Sissons and after providing him some further info on her weight, drugs, spinal fluid analysis results etc he came back with some advice and also a paper he had written.  Basically he commented that our doctors were using good treatments-better than most. He had a few suggestions on further drugs but to be honest as she is doing really well now (at the time of writing to him I was at my wits end with worry that she would not be able to walk again) and also our consultant did mention the other drugs he mentions but its all about cost at the end of the day.  He says that going on 5 different drugs is the best approach but I feel this is pretty impracticle if you have already reached your limit on Pet Insurance.
I am so glad too that I have someone else to talk about this with who has a dog with the same condition.
By the way Foxy has multi-focul and is blind in her right eye.  The GME has effected various areas of the CNS not just one.
By the way aswell as the Prednisolin and Cyclosporin we have also been giving her Vit C & E and also Antioxidents (Vitamin Q10) which our consultant said would be an added extra. We have also been giving her a muscle builder (Creatine) which he also said will build her muscles quicker while doing the physion and hydro.
We are off to Hydrotherpy in 15mins so I will let you know how she gets on.  This is to build her muscles in her hind legs because she had not walk for some time.
let me know your email address - mine is adamroberts2005@hotmail.co.uk and I will email his reply and report.
best regards,
adam

lol what a cheeky little madam! glad you've seen so many improvements (despite her mucking you about!), clearly she likes getting looked after, hope the improvements keep up

Hi Adam. So pleased to hear things are going so well. Im real chuffed to know that Foxy is improving at such a rate. I know when Cas was first diagnosed i felt so isolated cause no one ever seemed to have heard of this disease & the web sites i found in the begining were all doom & gloom. Im afraid the specialist that diagnosed her was far from imformative & initally told me her chemo would be every 4wks for 4 months. They kept her in so treatment could start a s a p & when i picked her up the 4 mths had expanded to 16 ! You can imagine how i felt-didn't think i could cope with it. My vet thought it unrealistic. I actually asked him what he would do if it was his dog, reply was he wouldn't. !
During this past year we've had a few ups & downs but on the whole im so glad i went ahead with the full number of cycles, even if she relapses when treatment finishes, I've had time with her that i wouldn't have had. As you no doubt gather i adore her & she has me wrapped round her paw !
Do you know how long Foxy's treatment is for?
Glad you heard from Allen Sissons. I'll email you & will be so interested to read his paper & advise. I may well e-mail him myself now. I've been too scared to do it in case he told me something that would end my hopes.
Im interested in the vits & antioxidents you're giving. Did your specialist advise them ?
Hope the hydrotherapy went well. I took Cas to an aquatic treadmill for a while, but at £35 a time, & with the recommendation she should go at least twice a week, im afraid it was cost prohibitive.
All the best. Hugs to Foxy
Sue

Su
sent you an email with the contacts in the US. Unfortunately they did not give me names but Universities. Maybe you can find something on the web but atleast Allen Sissens has replied to you with good advice.
Foxy has had another good week. She has put on another 1kg while away at Hydro and is now 25kg. She went from 30kg to 22kg will she was ill. She has has two intensive courses of Hydro now. Hydro normally costs £18 per hour session where we go (£35 quid you paid was a bit steep??)  But like you once a week was not going to be enough with the muscle she needed to build back up, however they were aware that we could not afford to come more often and it was inpracticle with work.  We were very lucky cause the hydrotherpist (Alison at CherryTree Canine Hydrotherapy in Eastchurch, Kent - recommendation!!!!)  fell in love with Foxy and said she would only charge us £10 per day (what we pay our dog walker for an hour!!) and she would look after her overnight at hers. Now each week she goes to Alisons on Tuesday night and we pick her up at on Friday night.  We provide food and give her the medication and she really looks after her.  She is spoilt as she has three dobamens who love her and play with her each day.
Each day, between other patients, she has a swim and also a treadmill. Normally twice but sometimes three times a day.  This along with all the food we give her she is putting on weight and muscle.  She can now swim unassisted.  We have been told to give her all the foods you should not give a dog so she can put on weight. High in protein foods as well like eggs, cheese, ham etc.  Unforuantely cause of the chemo drug she is on (Cyclosporin) her taste buds have gone a little so she likes anything smelly but she is a bit fickle and likes something one day and then not the next.
She is being tapered off the Prednisolin now and only takes the Cyclosporin each day. Unfortunately she got a Urine infection two weeks ago so is on a course of Antibiotics poor thigs.
The Antioxidents are Vitamin Q10 - they sell in Holland and Barrett at special offer of £8.99 now. We also give her Vit C & E tablets and also Creatine tablets before and after exercise (body builders take these).  All these are Human drugs but the vets said thats OK just aslong as we don't esceed the normal dose for an adult.  I would not worry about the Creatine tablets as your dog does not need to build muscle.
Its nearly been a month since she came home from the referral centre and now see her getting up on her own and walking is fantastic.  She still need strengthening at the rear but more hydro will help with this.  She is a totally different dog now and has come out stronger for it.
We manage to walk her to the park now and she enjoys socailizing with the other dogs again. Hopefully she will be back running soon - we'll see....
Best regards,
Adam x

So sorry to hear about your girl.  I am shocked at how quickly this took hold.  I had heard of this before but never knew a case personally.

Hope she continues to improve it sounds as if you are doing all you can.

Emma