WHERE THERE IS A WILL, THERE IS A WAY: POLYSACCHARIDE STORAGE MYOPATHY

PSSM/EPSM

“What lies behind us & what lies before us are tiny matters compared to what lies within us.”- Ralph Waldo Emerson

Sails Catch Wind

It was an overcast mild Sunday morning in late Spring, and I was alone in the arena. I warmed up my horse Sage Brush Sail Her, moved my leg back, and asked for a lope. A flick of her ears and a few strides later, we were loping around the rail. I pulled her up after one full circle of the arena with my vision blurry from tears. It was a moment to remember and cherish. This horse who had felt so bad for so long, finally felt good.

It was June of 2001 when I first laid eyes on Sage, an un-broke (green) two year old filly with a kind eye, coat the color of spun gold, and silky, thick blonde mane. I was instantly smitten. Little did I know as I wrote out the deposit check that I was about to embark upon a decade long mystifying journey.

It began the day Sage arrived at the barn with a case of diarrhea which I attributed to her 90 minute trailer ride. It became a journey of more than ten years and thousands of dollars in diagnostics and veterinarian visits, multiple trials of various supplements, numerous visits from chiropractors, bodyworkers, saddle fitters, and even a few animal communicators. In addition, there were annual moves from boarding stables looking for the best place to house my sensitive, hurting horse.

Our big break came in 2010 after learning about a friend’s experience with her horse diagnosed with PSSM (Polysaccharide Storage Myopathy, or EPSM for draft horses – Equine Polysaccharide Storage Myopathy). Sage and I had recently moved back to the barn at which my friend’s horse was stabled. It was the same barn to which Sage had been delivered by her former owners ten years earlier. All this time we’d been gone, I had been searching for a diagnosis.

Sage at age 2, shortly after purchase

Mind Or Muscle?

My friend and I began mulling over the fact that some of her horse’s symptoms reminded us quite a bit of Sage’s symptoms. Years ago on one of my countless internet searches, I had stumbled across some information on the web about PSSM/EPSM. However, Sage didn’t seem to meet all the criteria which included episodes of tyeing up (my friend’s horse had tied up severely before she received her diagnosis). I understand now that it has always been more of a chronic issue with Sage versus an acute one. When I initially stumbled across the EPSM/PSSM info and asked my then-current vet if he thought Sage might have PSSM, he immediately dismissed the possibility (what I didn’t understand at the time was that he didn’t know enough about this disease; not many vets did, and still do not).

Over the years with Sage, more than one well-meaning person had an answer for my ongoing horse saga. I received lots of advice while trying to fix my chronically ailing horse, all from well-meaning horse folks but ultimately all too simplistic for what I was dealing with. “You’re losing your place in the herd” was at first a painful comment to hear. Then I reminded myself that I know my horse, and what was going on was not as convenient or simple as a leadership or behavior issue. As for the woman who said “I’d sell her and get a horse I could ride,” that was just not going to happen. I had decided from the start that I was not going to give up on my horse. She was not a commodity. Besides, I was more than a little attached to her, especially as time went on.

Sage’s symptoms included all of the following to varying degrees: diarrhea and frequent symptoms of colic (with one severe, life-threatening colic), extremely tight muscles which almost every practitioner commented on, an affinity to roll at every opportunity, sensitive skin when brushed, drank a lot of water (perhaps just a result of the diarrhea), sore/sensitive back especially over the loins but which progressed in severity over the years, spasms or “hitching” of the hindquarters on various days and times, intolerant to grain or too much fresh grass, and always, always worse when confined in a stall.

 

Getting Worse To Get Better

By April of 2011, Sage was about the worst I had ever experienced in our 10 years together. She had lost weight and muscle tone, and she presented with an exaggerated hind-end gait that alarmed me more than usual. Perhaps it was more prominent due to her muscle loss, I thought. In the back of my mind, PSSM was still just a remote possibility. I was alarmed enough by the strange gait that I had Sage examined by two veterinarians, a farrier, and a chiropractor in the space of less than 10 days.

The result was four differing views and diagnoses. While that was nothing new to me, still, it was frustrating. Sage was also exhibiting the symptoms of extremely sensitive skin and back soreness which came and went to varying degrees over the years. The first vet I called out said it looked like fibrotic myopathy. My trusted chiropractor who came out said that all this strangeness was stemming from her stifle. A second vet didn’t think it was fibrotic myopathy or stifle, but she didn’t have another answer. We decided to take x-rays of Sage’s hooves, a hock, and stifles. We were able to rule out everything except hoof soreness due to the thinness of her soles (a fact I was already aware of due to the lack of concavity in her hooves, especially the front hooves).

The veterinarian recommended shoes for her hind hooves, surmising that the strange hind end gait must be coming from sore hind hoof soles. I didn’t see how that would solve all of the multiple issues that were currently presenting themselves, but I had to do something. I had first shod her front feet the previous August after many years of trying to keep her barefoot. Years ago when she had been sore and unable to walk on concrete (especially after a particularly bad barefoot trim), her gait had appeared somewhat like the way she was presently walking. So, I was cautiously optimistic about proceeding down the path of shoeing. Still, sore hooves couldn’t account for all the symptoms all of these years. Maybe we were all seeking a miracle.

Two weeks later, shod on all four hooves, Sage was still exhibiting the strange, stiff gait (even on very soft footing) as well as the sore back, the same hitching/spasm, sensitive skin, and lack of energy.

 

If At First You Don’t Succeed…

Within the month, as I continued searching for an answer, I discovered a video on the forum moderated by Dr. Beth Valentine, DVM. It was of a draft horse with EPSM who was walking just like Sage. I contacted Dr. Valentine immediately. She suggested that I try the high fat diet and other specifics that she recommended for EPSM/PSSM horses. I began changing Sage’s diet the next day. I didn’t have anything to lose except a few bucks on some oil (which was negligible or at least comparable to most supplements that I had tried in the past). Oil and fat was just about the one remedy that I had not yet tried on my horse.

For guidance and reassurance, the correspondence with a research veterinarian like Dr. Valentine was invaluable. I was going to treat this like PSSM without an extreme episode of tyeing up to which I could point. I started Sage on the oil poured onto alfalfa pellets, added some rice bran, and by the time I moved her up to the recommended 2 cups per day of oil she was moving increasingly better each day (I saw improvement and progress starting at about one cup per day).

Multiple Symptoms Lead To Confusion

Looking back, I was thrown off course the whole time by focusing on Sage’s intermittent diarrhea, which almost always correlated with the strange hind end stiffness and muscle spasms, along with battling hoof care, diagnosed ulcers, and boarding issues. In retrospect, I see that diarrhea was perhaps just how her painful body reacted, as it was always present with the hind-end muscle spasms/hitching. When I came across that internet information years ago on EPSM and PSSM, I couldn’t put it together for my horse – there was no mention of diarrhea as a symptom, and she wasn’t yet showing the symptoms of sore back and sensitive skin. Those symptoms came a few years later. However, from the start, PSSM reared its ugly head the most in Sage’s hind end, where she would, on a bad day, start off very stiff with a sporadic and bizarre “hitch” in her hindquarters. It was sporadic but persistent. It was diagnosed as a stifle issue when she was three years old, but lots of trotting on her rare good days did nothing to make it go away.

I always felt that there was some primary malady lurking below the surface; over the years I thought I had found it several times, only to be disappointed. The one time in her life with me that she appeared to feel better consistently was when she was on a higher-fat senior feed while in training for about three months when she was six years old. She “crashed” and returned to her old symptomatic self when the trainer made an abrupt, overnight change in her feed to the high sugar performance feed the other horses were getting. That’s when I took her off all grain and sugar products, but I now know that was not enough. I and my veterinarian at the time just didn’t realize it was the higher fat, low sugar feed, combined with the exercise of a training regimen that had been making a difference.

Difficult To Diagnose

A critical lesson here is that this disease (like other diseases) appears to show itself with varying degrees of symptoms and can manifest itself somewhat differently in each horse. And if horses exhibit varying degrees of different symptoms, in a relatively newly discovered disease, then there is a high probability of it being misdiagnosed in many, many horses.

Additionally, there are two names for the disease; in draft horses it is called EPSM, and it is PSSM for the other breeds. We are still learning about it, so that means that we don’t know all there is to know about it or how it manifests itself in individual horses. From what I now know, there seems to me a spectrum of severity, from mild to severe, and I have also read that there is a progression of the disease if left untreated. That is exactly what I experienced with Sage. Years ago I had taken Sage off of grain and sugar, when I noticed that sugar seemed to make her more symptomatic. Her disease progression was slow, but she was getting worse in her own peculiar, sporadic way before I found the diagnosis.

I still see occasional re-emergence of symptoms, but at least now I understand what they are and know how to mitigate them as best I can. For the most part, Sage has become the horse I always wanted with some extra diligence to diet, exercise, and the right supplements in the correct amounts for her needs.

Worth It All

All along, I knew that no amount of round penning, special sticks, gadgets or training methods were ever going to get my horse to do what she was not physically able to do. Neither would selling her. Her mind and heart were willing; it was her body that was not. Fortunately, I understood that about her from the very beginning, so I was determined to stick it out with her. Perhaps it was empathy: I had lived for years with my own debilitating muscle disease, also misdiagnosed for a decade. Usually it was I alone who could see that Sage felt bad whereas others thought she was being bad. Perhaps it was hope: I had overcome most of the challenges and verdicts of my own illness, so I lived with the faith that nothing was impossible.

Even more than that, I knew that learning from Sage’s health issues – all of the alternative and holistic ideas I had come across while trying to heal her – was a driving force behind my own recovery. When I first met her, I was a pharmaceutical rep for one of the largest drug companies in the world, and deep in the throes of my own illness. Through my years of searching for a cure for my horse, I became healthier myself. Ultimately, I could do no less than stick by her. I had looked within her the day I first laid eyes upon her as a two year old. And I just knew somehow she was worth it.

Worth it all.

 

12/29/11 Update: I had not been able to get Sage consistently feeling well on oil alone, so about 4 weeks ago I started adding acetyl l-carnitine to her diet (known as ALCAR) and she is vastly improved and more consistent. I will post updates and information links on this site in the weeks to come.

UPDATE: AS OF FALL 2012 I BEGAN BACKING OFF THE OIL. I HAVE SINCE WEANED HER OFF ALL OIL. SHE IS ON 1TBSP PER DAY OF ALCAR, A LOW CARB PELLET TO MIX IN VITA/MINERAL SUPPLEMENT, FLAX SEEDS GROUND FRESH (WILL BE CHANGING TO CHIA SEEDS). I AM AT A BOARDING FACILITY WHO IS WILLING TO SOAK HER HAY TO GET THE SUGAR OUT OF IT SO WE ARE DOING THAT AS WELL. I HAVE ALSO FOUND A FABULOUS BAREFOOT TRIMMER SO SHE IS PAIN FREE ON HER HOOVES AS WELL.

Update March 2017: Sage is doing really well with exercise (movement is critical), supplements, and the routine I have in place for her. She is currently on 8 ounces of a coconut/soybean/flax oil blend daily (she doesn’t need the two cups I first started her on – maybe because of the added acetyl l-carnitine, Mg, E – but 8 ounces seems to be the sweet spot for her). She also gets a half cup of fresh ground flax seeds daily, a tbsp of acetyl l-carnitine (ALCAR), and 3-4 scoops daily of Arthur Andrews probiotics (her guts have never been better), 200-300 mg hyaluronic acid, 1 scoop Uckele’s LaminOx for hoof care (as her hooves continue to grow out the founder), about 8,000 mg supplemental magnesium (as magnesium glycinate), 800 IU added vitamin E, 5000 mg glucosamine sulfate, and 1 scoop twice daily of California Trace supplement mixed into a pelleted feed mix of timothy hay and beet pulp. She is on a mix of Eastern Oregon orchard grass and local hay, and all hay is soaked prior to feeding to remove the excess sugar. I buy the ALCAR, hyaluronic acid, glucosamine, and magnesium from a bulk supplier such as Pure Bulk for the cost savings (and they are human grade). She’ll be 18 this May, and I have found that with age and with her movement issues affecting her joints, the hyaluronic acid and glucosamine combo seems to really help her stay comfortable.

PLEASE NOTE: what I have learned from forums and trial and error with Sage is that all horses are unique and need different levels of fat and other supplements. Keep trying until you get the right combination!

 

“Healing is a matter of time, but it is sometimes also a matter of opportunity” ~ Hippocrates

Links to the researchers’ sites for more info on PSSM/EPSM:

Dr. Stephanie Valberg, PhD, DVM

Dr. Beth Valentine, DVM

Have a draft or draft cross? Check out Dr. Valentine’s book; you can purchase “Draft Horses, An Owner’s Manual” from the Rural Heritage Bookstore or from my Amazon Bookstore (where I have put a lot of my favorites and recommended titles).

Advice on diet for EPSM/PSSM horses:

diet as recommended by Dr. Valentine

diet as recommended by Dr. Valberg & Equine Center of University of Minnesota

Two more cases I found interesting & helpful:

A Horse Named Doc

Could My Horse Have PSSM?