Saskatchewan residents who seek an unproven treatment for multiple sclerosis abroad have to be prepared for a frustrating time seeking followup care at home.

That's been the case, at least, for Watson McGregor and his wife Alisa, of Rosetown. They've travelled out of the country three times for Watson to have procedures related to the "liberation treatment."

"It's been a roller coaster, and frustrating, and it would be nice to just go to our doctor and say, 'Can you take a look at this, and do something' " said Alisa.

The treatment they pursued was first publicized by Italian Dr. Paolo Zamboni, who proposed MS is linked to narrowed veins in the neck that restrict blood flow away from the brain. He coined the term chronic cerebrospinal venous insufficiency (CCSVI) to describe the condition and proposed that widening the veins using a venous angioplasty -inserting a small balloon into the vein, inflating it and withdrawing it -would alleviate MS symptoms.

MS is considered a neurological disease of unknown cause, where immune cells wrongly attack nerve fibres in the brain and spinal cord, resulting in chronic, increasingly debilitating conditions such as blindness and paralysis. Canada has among the highest rates of MS in the world and Saskatchewan has the highest rate in the country.

Watson McGregor has primary progressive MS -the less common variant where the disease progresses rapidly after its first onset. Early research into CCSVI and MS has shown venous angioplasty to be less effective for those with primary progressive MS, but the McGregors still wanted to give the procedure a try.

Watson, 53, had his first venous angioplasties in June in Bulgaria. For six weeks afterward, his symptoms improved dramatically, Alisa said. His energy returned and he could speak clearly: "It was just like somebody snapped their fingers and he was back," she told The StarPhoenix in August.

His condition declined, however, and they decided to go back to Bulgaria in September, where doctors inserted two stents in his veins in the hope the veins would stay open rather than re-collapsing, which is what they believed had happened.

Stents are wire mesh tubes inserted and left in the veins, to hold them open. Stenting is a less common treatment for veins, as it carries much higher risks than balloon angioplasties.

Early on in CCSVI research at Stanford University, in November 2009, a patient required open heart surgery after a stent became dislodged and migrated through the vein to the heart.

And last year, in October, a Canadian man with MS died after having a stent put in. He had travelled to Costa Rica for the procedure. After he returned home, a blood clot formed around the stent. He sought treatment at home, but was refused, so he went back to Costa Rica, where he died after doctors tried to dissolve the blood clot.

The McGregors believe a clot has also formed around the stent in Watson's left jugular. Unable to get confirmation at home, they looked abroad, again.

This time, their journey took the McGregors to southern California, to Pacific Interventionalists -a private clinic of vascular specialists that has been treating MS patients.

They examined Watson on Jan. 14.

"When I sent all the CDs (with Watson's information) to the doctor in California, he phoned back and said it was a blood clot, likely blocking the stent," Alisa said. "When we went there, they couldn't even get the scope through the stent, and the blood clot's on top of it, so they chose to leave it there. . . . They said it was probably safer just to leave it."

The doctors also said Watson should be taken to an emergency room at home to be properly checked out and treated. He had an appointment with a family doctor in Rosetown on Tuesday, who tried to refer him to a vascular specialist that same day.

"The vascular on-call doctor at Royal University Hospital said they wouldn't treat us, that we need to go to the MS clinic or see an MS doctor," said Alisa.

Instead, they were referred to a neurologist, she said.

"They wouldn't even check the jugular veins because they believe veins really don't even have anything to do with MS. . . . Really, I just want Watson's jugulars checked for clots. I just can't see that that's such a huge issue. And probably they would if he hadn't had this treatment. That's what really (upsets me)."

The StarPhoenix contacted both the College of Physicians and Surgeons of Saskatchewan and the Saskatoon Health Region to inquire about followup care for MS patients who have travelled abroad for vascular procedures. They both had the same message: Urgent medical care will not be denied to anyone, but at the same time, patients can't demand certain tests or procedures.

"One thing I really want to make clear from the college of physicians and surgeons is we do expect physicians to respond to patients who are in need of medical care, regardless of what previous treatment they may have had here or elsewhere," said Dr. Dennis Kendel, the college's registrar. "It's a different matter for a patient to say, 'I want a certain test done.' "

Like other physicians in Canada, those in Saskatchewan are waiting for the results of clinical research into CCSVI and MS, which will take years to complete. There are a number of trials in Canada looking specifically at the occurrence of CCSVI, but not at its treatment.

The Saskatchewan Party government has committed $5 million to clinical trials and in December, the Saskatchewan Health Research Foundation put out a call for proposals for research into the liberation treatment. The proposals are due March 28, with funding decisions expected in mid-April.