My pleasure! Jos is a such fountain of knowledge, I’m so glad you were able to contact him. My fingers and toes are crossed for you. Please do update us!
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Quick update.
I have reached out to Dr. Reed at R & R, Dr. Johnson at NB and Dr. Aleman at UC Davis.
Haven’t heard back from Dr Reed yet.
Dr. Johnson did view the video but is so busy that she is no longer able to do out of state consults. A Dr. Colmer who works with her is supposed to contact me, hopefully next week.
I just reached out to Dr. Aleman today.
Apparently these are the only 3 neurologists in the U.S. I am just grateful to have been able to be connected to them. Hopefully I will have some direction soon.
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There are considerably more than 3 boarded veterinary neurologists in the US.
There are likely many fewer who are equine-exclusive, though.
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Good to know. The person who told me this was from New Bolton. She must have been referring to equine exclusive neurologists.
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I haven’t read the entire thread, but my EPM horse did dribble urine also. Keeping his hind legs clean was a chore. He was retired at 19 when I was undergoing cancer treatments, but he lived to 30. Hind legs weak. He relapsed 3 times.
While not a boarded neurologist, Dr Daniela Luethy at University of Florida is an internal medicine specialist who trained with Dr Johnson and worked at New Bolton for quite a few years before going to UF. She was invaluable helping me through a presumptive EDM diagnosis and is also a genuinely kind and caring human. If you are looking for another consult option, I’d guess she’s close to the next best thing if you can’t get Dr Johnson or Dr Reed (both of whom consulted on my horse’s case through Dr Luethy and the radiologist).
There’s also Dr Amy Polkes who is in private practice in Maryland, internal medicine boarded but I believe specializes in neurology. I’d imagine she also takes consults.
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OP - I could have sworn I sent you a message, but apparently never pushed “send”…there is no record of it, lol.
My horse that had polyneuritis Equi was at UF and the senior vet on the case was Dr Robert MacKay. He has done a lot of work on diseases with neuro components. My case was almost exactly 2 years ago, and the horse was there approximately a month (July 2020). It wouldn’t hurt to contact him. mackayr@ufl.edu.
How is Jasper doing? Any changes?
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I’ll second Dr. McKay at UF. He treated my horse for EPM years ago, and he has quite a good reputation for neurological problems. So you have two people you can reach out to at the University of Florida Vet School.
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Dr Nout-Lomas at CSU is boarded in internal medicine as well as emergency and critical care, but she does a lot of neuro related work and research/publication.
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Our most recent neuro mystery shipped to Dr. Johnson at New Bolton. Wonderful care.
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Thank you! I will reach out to Dr. Luethy as well.
Thank you!!!
Thank you! I will reach out to Dr MacKay.
I just got back from a trip. I saw Jasper today. He seemed indifferent to me. LOL. Guess he didn’t miss me too much. I was working and it is extremely hot here so I didn’t work with him. The barn manager said he was fine while I was gone. No issues.
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No, not yet. Hoping to hear from Dr Colmer at NBC next week. I have also reached out to Dr. Aleman at UC Davis and Dr Luethy at UF.
For those who are interested, I received several links to articles and videos from NBC related to EPM and EDM. This video lecture in particular was very interesting. Jasper has some of the characteristic signs of EDM - like the spookiness, dullness and no major signs of ataxia.
Dr. Johnson is an engaging speaker and teacher. I am excited to get to speak to Dr. Colmer (hopefully next week) who works with her.
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Great information in that video, thank you for sharing. I think that the horse mentioned in the video, Sheldon, was mentioned here in another thread by his owner? I think if you search EDM you might find it.
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They also send me a link to Sheldon’s story.
https://read.uberflip.com/i/1089065-march-11-18-2019/39?
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I have an update!
Veterinarian / Equine Specialist Response #1
I just received a response from Dr. Colmer at NBC. She works with Dr. Amy Johnson. Obviously she cannot recommend treatment or diagnose without actually seeing Jasper, but the following are some things she mentioned.
- A “neurologic bladder” is certainly the most common reason we see causing urine dribbling. EPM can cause this issue in some scenarios, as can polyneuritis equi.
- Urine dribbling / difficulty urinating etc is certainly not a hallmark of degenerative conditions like EDM/eNAD, but with many different neurologic diseases, the signs can be diverse.
- EDM/eNAD is often seen in the QH breed (among many others), and typically does present with concurrent “behavioral changes” that can range from dullness all the way to aggressive behavior, increased spookiness, unpredictable “outbursts” etc.
- Regarding EDM/eNAD, anecdotally, they have noticed some horses seen for ataxia and behavioral changes tend to drop their penis during their gait evaluations in scenarios where it would not be anticipated, and then go on to get diagnosed with EDM/eNAD later.
- The ejaculation videos were shared with the reproductive service, behavioral service and soft tissue surgery service.
- The “swishing” of the tail exhibited suggests some element of discomfort and it is possible that there is some sort of irritation or inflammation of the penis causing this.
- Other thoughts from the repro and behavioral departments are that the ejaculation could be secondary to buildup of urine leakage into a specific region of the penis (the seminal colliculus) which can potentially trigger contractions leading to ejaculation. They suspect this etiology in a case they’ve worked on in which the horse ended up having spinal neuromas impinging on the pelvic nerve roots that are responsible for the coordination of bladder neck and ejaculation coordination. The repro service has also seen horses with ejaculatory issues later go on to develop more overt neurologic signs down the road.
She went on to say that so many things could be causing Jasper’s issues and it is hard to say what to do next but a spinal tap would be a good consideration.
Although there is no simple answer I am extremely grateful for her response. At least it is confirmed that Jasper’s issues are real and likely have a physical root cause (it has been suggested by some that because he doesn’t do it in the pasture that it is just an evasion tactic that needs to be ridden through). 
I have expanded my quest and reached out to total of 10 different vets/equine professionals including a holistic practitioner and an osteopath. Trying to cover all the bases. This is the first and only response so far.
And I reached out to the the person I bought him from who was selling him for the owner who I never met (
). She kindly responded to my message and reviewed the video and assured me that he never had ANY issues with either of them. 
I did follow up with Dr. Reed’s admin yesterday since I haven’t heard back from R&R. I will see if anyone else responds and then try and decide what to do, but it sounds like a spinal would give me more info, but not necessarily answers, unless he is positive for EPM. I have to research the spinal more as I am not really sure of all the information it can provide. Or, I could assume EPM and just treat for it and see if it works.
Thank you all for your support.
Laura & Jasper
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So glad you got this response.
With this in hand, do you think your vet might do a steroid trial?
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