rashad Posted December 21, 2022 Share Posted December 21, 2022 (edited) Hello all, I'm in a state of shock because a few days ago YouTube told me what my trusted vet has not diagnosed for many months - that my Jazzy has degenerative myelopathy (DM). It's my mistake that I confused "caring" with "competent" - and my poor dog is paying the price. Yes, it is a devastatingly incurable condition, but physio and some meds can slow the progress, or so I understand. Having lost trust in my current vet, I am now looking to change. And I think it makes sense for me to try and find a vet who has some familiarity with the breed. Are there any toller owners out there who can suggest a good vet? We are out east of Melbourne, in Vermont. But traveling a distance for proper care is a no-brainer. Thanks in advance (I have tried emailing a couple of breeders and the NSDTR club, but have had no response to my emails) PS: I should clarify my statements above: There are some very clear symptoms of DM, like decreasing strength in hind legs, paws dragging along the ground and folding backwards, inability to lift the tail in a normal "wag" position, legs crossing over when she walks or turns. all symptoms I pointed out to the vet. Jazz does have spinal arthritis, diagnosed in May, and the vet seems to have become fixated on the arthritis, insisting that the weakness was a reaction to her painkillers. Edited December 21, 2022 by rashad Link to comment Share on other sites More sharing options...
Mairead Posted December 21, 2022 Share Posted December 21, 2022 Disappointing you haven't had replies from breeders so far but good you finally have a diagnosis. USA text " The 5-Minute Veterinary Consult " (3rd edition 2004) says German Shepherds and German Shepherd mixes are the dogs most commonly affected, rare in some other breeds, ("collie and collie crosses", Labradors, Siberians, Chesapeakes, Kerry Blues and Welsh corgis. Tollers not mentioned, so that may explain why it wasn't on your vet's radar. The text has two pages of info with the then unproven treatment of exercise, vitamin supplements and epsilon aminocaproic acid "apparently slows the progression in 50% of patients". Maybe German Shepherd people or websites may provide info? If not, maybe try asking German Shepherd people at obedience trials etc for a German Shepherd vet recommendation. I know I was not well thought of by some breeders for mentioning potential problems " it will discourage people". Good luck. Link to comment Share on other sites More sharing options...
_PL_ Posted December 21, 2022 Share Posted December 21, 2022 Try the Duck Toller FB groups for vet leads, but I also wouldn't be diagnosing DM via Youtube! It's great in some ways to do your own research but Dr Google can send you down the rabbit hole of worst case scenario or just completely wrong. If you have a specialist hospital available I'd just skip straight to a neurologist consultation. 8 Link to comment Share on other sites More sharing options...
Mairead Posted December 21, 2022 Share Posted December 21, 2022 (edited) Oops, skipped over the YouTube reference. I was reading it as the vet had taken months to diagnose. I agree not a reliable source of info. I searched "degenerative myelopathy toller" and found some info "anecdotally known in tollers since 2009". I lean more to the .edu or .org websites and take the info and reference to the vet, same for my GP. Edited December 21, 2022 by Mairead Link to comment Share on other sites More sharing options...
persephone Posted December 21, 2022 Share Posted December 21, 2022 Book into a specialist for a proper diagnosis- youtube diagnosis may not be that reliable 2 Link to comment Share on other sites More sharing options...
rashad Posted December 21, 2022 Author Share Posted December 21, 2022 Ha ha, my bad for not elaborating. I asked for that... But let me also condition this argument: On midnight June 16th 2006 Dr Google saved my life. I was tempted to get to bed to sleep off my developing stroke symptoms and he (She?) said to me "Don't be an idiot, call an ambulance. NOW!" ... which is why I am not writing this posthumously, sixteen years on. And why my left hand still works.... Sort of. So while I know all the dangers of the advice that the Great Unwashed take from blindly following YT and its social media ilk, I also know that the Internet is a gigantic library resource in the sky that can be used (intelligently!) for more than learning Dua Lipa's latest dance moves. The night that Jazz was diagnosed with oral cancer, Google Scholar gave me eight journal papers on Canine oral cancer and mandibulectomy and its prognosis, that I read in between crying jags. I already have a neurologist appointment lined up for Jazz (Unfortunately, a baaad time of the year for making appointments with vets. Their Tesla Model Ys are on holiday recharge already ;) And an initial physio consult. On Christmas Eve. But.. I so wish you were right and that my g-diagnosis is wrong. If ever in my life I would like to be proven wrong, it is now, about this. I wish my vet would spend more time looking at the Internet and YouTube and not being dogmatic (rueful pun totally intended) Yes, I wish this vet was not describing Jazzy's past few months.. Thanks for your input and care, guys. It's comforting to have the discussion, because when I sit back and pause, the world turns dark and the walls close in. R Canine_-degenerative-myelopathy-Tollers-copy.pdf 3 Link to comment Share on other sites More sharing options...
Rebanne Posted December 21, 2022 Share Posted December 21, 2022 so your dog has oral cancer and spinal arthritis? Is the oral cancer in the bone or the tissue?What meds is she on for these conditions? How old is Jazz? Link to comment Share on other sites More sharing options...
Deeds Posted December 21, 2022 Share Posted December 21, 2022 My 12 yr old Giant had oral cancer soft tissue. We went to our local vet who removed the lump and gave the dog 3 months to live. We then immediately proceeded to Small Animal Specialist Hospital where the dog was tested for her suitability to receive a special vaccine for Melanoma. Fortunately the cancer had not spread and with the vaccine she lived for another 4 years until she was over 16 and something entirely unrelated took her out. Link to comment Share on other sites More sharing options...
Amazetl Posted December 21, 2022 Share Posted December 21, 2022 It can be difficult to diagnose some things, sometimes vets probably do overlook or don’t listen too well to you. It can be good to try different vets if there’s an unresolved health issue. I know some vets can be very relaxed about some things and then other vets want to order tests that seem unrelated. I hope you find your answers. 1 Link to comment Share on other sites More sharing options...
Diva Posted December 21, 2022 Share Posted December 21, 2022 (edited) Can’t help with a Toller familiar vet but it’s good you have a neuro appt lined up. Lots of conditions have similar symptoms in the early stages, I have been told you can only be absolutely certain that is what it was by post-mortem. If I suspected it in a dog I had I would do the cheek swab for the SOD1 mutation (I do all mine anyway and know they are clear as I breed once in a blue moon). Of course at this time of year labs are closing for Christmas too so it may take a while. Orivet Australia have the test for around $70 but many other labs do too. If it came back as not at risk (either clear or carrier) I would look for other causes of the symptoms. If it comes back at risk it is good info for the vets and I would be telling the dog’s breeder also, if you know who they are. Actually contacting the dog’s breeder is a good idea even without the test result, i hope they aren’t one of the breeders you contacted who hasn’t responded. If they are testing now they should be able to tell you the prevalence in their lines, and they should be testing if they are still breeding. But I of course that assumes they are known. Edited December 21, 2022 by Diva 1 Link to comment Share on other sites More sharing options...
Dogsfevr Posted December 21, 2022 Share Posted December 21, 2022 Is this the dog that you where getting Cancer treatment on ?? A Toller vet is irrelevant your needing a vet savvy in potentially this area . It could be many issues . 1 Link to comment Share on other sites More sharing options...
rashad Posted December 21, 2022 Author Share Posted December 21, 2022 8 hours ago, Rebanne said: so your dog has oral cancer and spinal arthritis? Is the oral cancer in the bone or the tissue?What meds is she on for these conditions? How old is Jazz? You know Rebanne, I've had a blog about Jazzy's cancer on the drawing board for a couple of months. But things have moved so fast it's still "in the works". I want to publish it because when the diagnosis came in and I was told that she had to have the mandibulectomy, I went looking for information from owners about post-surgery experience and care... and found so very little online. Now, a couple of months in, I can understand the likely reason: exhaustion and worry, to the point of not wanting to think about it in the life-gaps. I was hoping to find advice from those who'd walked the road ahead of me. I still think it will help others, so I will do it - and now probably document Jazz's DM. Jazz turned ten on the 4th of December. On the whimsical notion that a dog year is seven human years, I have calculated that we will both be the same age around March of 2023. - Seventy two and change... Just my gathered and experiential knowledge below - and a lot of reading... I am merely an owner-layman whose dearest friend is in deep trouble, so I read and read and try to learn :- Canine oral cancer takes a few different forms. Again, an unfortunate predisposition amongst tollers to fibrosarcomas, which is what Jazz got. Or, more correctly, what got Jazz. Sigh. https://vcahospitals.com/know-your-pet/oral-tumors-in-dogs-fibrosarcoma The cancer manifested as a swelling of Jazzy's gum, but problematically, all along her lower left jaw, from canine to molar. It can be in smaller areas, in which case the surgery would have been less drastic. My desperate wish that she could at least retain both lower canines so she could hold a ball in her mouth went unanswered. It looked pretty innocuous, like a swollen gum from a decayed tooth. A few weeks of X-rays, CT scans and oncologist appointments later, it was a fibrosarcoma. These are characterised as what they call biologically-aggressive, histologically-passive. In our language, it means that it invades the jawbone locally, but is slow to metastasize to other parts of the body. Small mercy, the latter - but the former made it a given that removing the cancer would require removing half her lower jawbone with gum and teeth. But the biologically-aggressive is what says that it will return, like General MacArthur... Even at that point it could have been a benign tumour, but the biopsy on the removed section showed that it was a malignant cancer. With the high likelihood that it will recur locally (in her jaw). The routine recommendation is that post-surgery, she undergo radiation to kill any remaining cancer cells and then ongoing chemo. I decided against the radiation. Might have been different if it were available in Melbourne and guaranteed to eradicate the cancer, but the sum total of putting her through the drive up to Sydney, strange accommodation, a week of radiation with the pretty painful after-effects of nuking her mouth - and about $17K in total... I balked at it and passed on radiation, went straight to chemo. So, to arrive at answering your question about Jazzy's meds: - Post-surgery - and for her background arthritis, she is on a painkiller (Gabapentin) and an anti-inflammatory (Meloxicam) - Chemotherapy: It's called metronomic therapy, which is low doses of medication, every alternate day, ongoing: 1 capsule of Cyclophosphamide, used in human chemo too, with two supporting meds on the same day: Fruseamide, a diuretic and Meloxicam, the anti-inflammatory she is on anyway. Ref here: https://www.thepetoncologist.com/blog/faqs-metronomic-chemotherapy-in-pets Apologies, I do have a tendency to rabbit on. I better stop. (And that was just about the cancer ) Thanks for your interest. R 2 Link to comment Share on other sites More sharing options...
rashad Posted December 21, 2022 Author Share Posted December 21, 2022 6 hours ago, Diva said: Actually contacting the dog’s breeder is a good idea even without the test result, i hope they aren’t one of the breeders you contacted who hasn’t responded. I have contacted the breeder, but only to ask about a vet and bring her up to date with Jazzy's problems. We don't correspond much but she is more friend than just someone I bought Jazzy from. And yes, all the breed tests were done at the time, including whatever the genetic testing was available in 2012. The problem, Diva, is that Nature is not binary. And statistical anomalies - or variances - are a part of Life. It would be nice to say, "Hey, the SOD1 gene test was fine so it can't be DM! Great!" - but if you look at the literature, like the paper I posted earlier, I don't think it makes a huge difference whether it is DM or a spinal degenerative disease of the same ALS/MND family. Which could be the case, given its progression has been slower than DM is "typically". Tomaito - Tomahto ... Different roads, same unfortunate endpoint. Happening before my eyes and it is hard viewing. 2 Link to comment Share on other sites More sharing options...
tdierikx Posted December 21, 2022 Share Posted December 21, 2022 I found a page on DM at Fitzpatrick Referrals (the Supervet)... it mentions Tollers in the list of affected breeds... but also states that there are other issues that can mimic the symptoms of DM - spinal arthritis being one... https://www.fitzpatrickreferrals.co.uk/neurology/canine-degenerative-myelopathy/ Good advice from @Divare the genetic test for the mutation that can cause DM... I'd definitely be following up on that option ASAP... if only to rule DM positively in or out. Spinal arthritis can manifest many symptoms that may look like DM - it depends exactly where the arthritis is, how far it has progressed, and whether it is impacting the spinal cord directly. Just out of interest, how long ago was the spinal arthritis diagnosis made, and how long ago was the cancer diagnosis/treatment started? Is there any correlation there maybe? Did the DM symptomology increase once the treatment for the cancer started? Are the cancer meds the only meds Jazzy is on? Is she being given any other supplements or medications for any other issue? T. Link to comment Share on other sites More sharing options...
Diva Posted December 21, 2022 Share Posted December 21, 2022 (edited) 7 hours ago, rashad said: I have contacted the breeder, but only to ask about a vet and bring her up to date with Jazzy's problems. We don't correspond much but she is more friend than just someone I bought Jazzy from. And yes, all the breed tests were done at the time, including whatever the genetic testing was available in 2012. The problem, Diva, is that Nature is not binary. And statistical anomalies - or variances - are a part of Life. If they are your friend I’d just ask for the DM test results on the parents of your dog. It’s good to be able to rule something out and this sounds easily done- DM testing was well and truly around in 2012. Anomalies may occur but that doesn’t make using best available science not useful, especially when the test is cheap, easy and readily available. But different strokes and all that, good luck. Edited December 21, 2022 by Diva 2 Link to comment Share on other sites More sharing options...
rashad Posted December 22, 2022 Author Share Posted December 22, 2022 5 hours ago, tdierikx said: I found a page on DM at Fitzpatrick Referrals (the Supervet)... it mentions Tollers in the list of affected breeds... but also states that there are other issues that can mimic the symptoms of DM - spinal arthritis being one... https://www.fitzpatrickreferrals.co.uk/neurology/canine-degenerative-myelopathy/ Good advice from @Divare the genetic test for the mutation that can cause DM... I'd definitely be following up on that option ASAP... if only to rule DM positively in or out. Spinal arthritis can manifest many symptoms that may look like DM - it depends exactly where the arthritis is, how far it has progressed, and whether it is impacting the spinal cord directly. Just out of interest, how long ago was the spinal arthritis diagnosis made, and how long ago was the cancer diagnosis/treatment started? Is there any correlation there maybe? Did the DM symptomology increase once the treatment for the cancer started? Are the cancer meds the only meds Jazzy is on? Is she being given any other supplements or medications for any other issue? T. Thanks, T, all questions that are on high rotation through my head. The key differentiator from the spinal arthritis is that there's no pain in what we're seeing, the paw scraping/folding, lowered tail wag, the unsteady "sailor" gait, legs crossing over when she turns, and so on. It's every box ticked on the DM checklist. Sure, people will jump up and say "But dogs mask their pain really well" etc. This is different, I know that (thankfully) there isn't pain associated with her movement.' You live in a close-proximity, close-emotion relationship with someone - whatever species - for ten years, and if you cannot tell when they are in pain, you have the perceptive ability of a doorknob, or you are are an egomaniacal idiot, ha ha Not guilty on both charges. I'm convinced in myself that it is DM, but then as I always say: Married thirty years, divorced for twenty, one daughter: I'm probably a world expert on being wrong... So I'll let the neuros decide. But whether it is DM or another MND or whatever, the (metaphorical) walk looks the same. (The actual walk too) Re genetic test: I'm not sure that it is too relevant now. To me and Jazz anyway. Look at the studies and literature: They say, yes, genetic testing can tell you whether there is a likelihood of a dog developing DM. But.. if the test is clear, it does not rule out DM completely. Sometimes I think Jazz and I have spent too much time together... I suffer from something called trigeminal neuralgia, which is - like DM - a darned condition of exclusion. When they run out of tests, they shake their heads and say "ok, it must be TN". Doesn't really matter what they call it, especially when you're holding you head in agony in a darkened room listening to Spiegel Im Spiegel to try and quell the pain. Timeline? Spinal arthritis diagnosis was in May Cancer indication first detected late August, first biopsy early September, detailed CT and biopsy followed, mandibulectomy on 19th September. Resected jawbone biopsy confirmed the malignancy of the sarcoma, no metastasis. Metronomic chemo started November after the slow and painful recovery from the surgery. Meds: She has been on painkillers (Gabapentin) and antiinflammatory (Meloxicam) for the spinal arthritis since it was identified in May. Which has melded well with her Chemo regime: Cyclophosphamide, frusemide and meloxicam. No other meds, which I'm happy about. As stroke survivor I take 12 tablets every day and the constant concern about interactions is tiring. Glad I'm spared that with Jazz. And lastly, no. No discernible change in her DM symptoms with the chemo. If anything, the progression of the symptoms slowed a bit - but that is my very rough observational skills - and because it has been a gentle but clear degradation anyway, hard to judge. Thanks, R Link to comment Share on other sites More sharing options...
tdierikx Posted December 22, 2022 Share Posted December 22, 2022 Thanks for the detailed reply @rashad... you are definitely on top of everything in that respect... lucky Jazzy to have you as her mum. I wouldn't rule out the genetic testing, as it may come up positive, and then you might be able to rule DM definitely in - and also then let the breeder know that they might need to check on other owners of pups from those parent dogs... I wouldn't rule out the arthritis as being still a possibility for the symptomology. Apart from the fact she's on painkillers and anti-inflammatories that will mask a fair amount of any pain, some nerve damage could result in neuropathy that is painless... I know that my own spinal problem had a stage of no pain but also resulted in issues with one of my legs. A spine CT may give an indication of how much of her problem is related to the arthritis, and how much may be attributed to DM... there is a possibility that she may have both conditions... which sucks, but is well worth knowing if that is the case, yes? I'd expect a decent neurologist to at least consider such tests... One last thing... can you please give Jazzy a cuddle from me and tell her that she has a secret admirer? *grin* T. 1 Link to comment Share on other sites More sharing options...
rashad Posted December 22, 2022 Author Share Posted December 22, 2022 4 hours ago, tdierikx said: Thanks for the detailed reply @rashad... you are definitely on top of everything in that respect... lucky Jazzy to have you as her mum. I wouldn't rule out the genetic testing, as it may come up positive, and then you might be able to rule DM definitely in - and also then let the breeder know that they might need to check on other owners of pups from those parent dogs... I wouldn't rule out the arthritis as being still a possibility for the symptomology. Apart from the fact she's on painkillers and anti-inflammatories that will mask a fair amount of any pain, some nerve damage could result in neuropathy that is painless... I know that my own spinal problem had a stage of no pain but also resulted in issues with one of my legs. A spine CT may give an indication of how much of her problem is related to the arthritis, and how much may be attributed to DM... there is a possibility that she may have both conditions... which sucks, but is well worth knowing if that is the case, yes? I'd expect a decent neurologist to at least consider such tests... One last thing... can you please give Jazzy a cuddle from me and tell her that she has a secret admirer? *grin* T. The "one last thing" done first, (no excuse required for a jazz-cuddle - which sounds like a dance step from the roaring twenties) - but she had probably already picked up on my mood: upbeat from your kind words. The neurologist will have a heap of data to work with. She's been CT'ed multiple times in the past few months (I mean Jazz, not the neurologist ;) While the first was of her head/jaw region, the last one was to assess if the cancer had metastasized, so was of the body But the neurologist may well need to buy a bottle or two of Grange for the New Year, so doubtless we will do another CT (and I gather they have a sparkly new MRI machine as well... gulp!) It's okay, I achieved a state of comfortable numbness when we passed $10,000... a few months ago. I'm a shining example of the principle that the less money you have, the easier it is to spend it (on the important things) When I build Utopia, first order of the day will be Medicare for Animals: They laugh, they love, they teach. they don't complain. What the heck more can you ask of a citizen... ? Take care, R 2 1 Link to comment Share on other sites More sharing options...
tdierikx Posted December 22, 2022 Share Posted December 22, 2022 Medicare for animals has already been put forward in Victoria, and I'm tipping that it will also come up in NSW parliament possibly next year... not that it will actually get off the ground and be implemented, but maybe we will see some legislation changes that see a move in that direction for people struggling with vet costs. It's not that vets just charge huge fees because they can. There are so many background costs that are required to run a vet clinic, and the staff also need to be compensated for their training and experience - and contrary to popular belief vets don't actually get paid all that well generally when you compare with human medicine doctors (vet nurses also get basically minimum wage). Jazzy is so lucky to have you in her corner... I have no doubt she knows how much she is loved... and you are doing everything you can to make her life so much more comfortable in her time of need. I take my hat off to you... you are a good mum. Hugs to you and Jazzy... T. 3 Link to comment Share on other sites More sharing options...
asal Posted December 22, 2022 Share Posted December 22, 2022 re your " trigeminal neuralgia," Know what you mean. I have been incredibly lucky, was suggested I try Chinese massage and acqupuncture by a friend who knows a chap with a Masters Degree in pain relief, (he did the standard course at Sydney Uni, then went to China for the Masters Degree. He warned my I had a 50% chance it may or not work for me. I have been so fortunate in my case, it switches it off completely for months, although have to go to fortnightly sessions until it completely disappears. Thanks to covid I didnt go for over 6 months before it came back. Presently completely gone again. huge alternative to what the neurosurgeon wanted to do. go into my brain and sever it completely, for the entire left side of my face. said it would leave me with that side totally paralysed as if I had a stroke? He did not seem to feel like telling me the percentages of the nerve re-joining itself, he was so keen to do the op. I knew though. 1 Link to comment Share on other sites More sharing options...
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