Hey Ya'll. Seth here. Since our last entry, a lot has happened. We believe the Lord is most able to direct those who are seeking His will WHILE actively moving forward, For us, this this has meant continuing to approach The Project in two ways: A) researching/pursuing ALS trials like the Israel trial; and, B) continuing to search for alternative explanations/causes for my symptoms...It's been a bit of a horse race at times and it's been interesting to feel Divine direction and intervention on both fronts.
Horse #1: While actively preparing to move the family to Israel to seek to join the stem cell trial (listing/showing our house, gathering passports, applying to schools, apartment hunting, etc.), we received the following email from those running the trial:
Dear Mr ChristensenWe have now finished the first part of our clinical trial-the safety one and we are waiting for the approvals from the ministry of health in order to start the second part with a higher dose of cells.We still do NOT have the approval and we unfortunately do not know when! But at the moment will have it be sure that will discuss your case among the others with the committeeSincerelyPanayiota
This email, along with the recent unrest in the region, led use to delay our move plans...meanwhile horse two comes striding from behind...:)
Horse #2: With the help of some incredible doctors, I have undertaken a testing regimen beyond that typically used for ALS to explore other potential diagnoses. This regimen has included blood, urine, and fecal analysis; imaging including ultrasound and MRI; gastrointestinal workup; ophthalmology workup; muscle biopsy; and genetic testing.
Results appear to show evidence of treatable autoimmune issues known to cause neurological issues, but not known to be linked to ALS. Because the ALS / neurology community is fairly unfamiliar with these autoimmune indicators, and because the rheumatology community is fairly unfamiar with ALS, the path forward requires a team effort where no standard team has existed. For those with medical training, findings include:
- positive antiphospholipid antibodies both by ELISA (antiphosphatidylethanolamine) and by lupusanticoagulant (by dilute Russell vipervenom time);
- positive ANA,
- persistently positive anti-double-stranded DNA;
- high-titerrheumatoid factor.
- CPK is in the 600s.
- MRI of the LUE showed patchy edema of all muscles, consistent with myositis.
- Biopsy was negative for myositis
- slightly elevated porphiryns
My Boston Doctors met on Monday to discuss how/whether to treat me for these autoimmune indicators--there is literally one documented case ever (2008, Iran) of an individual with a similar medical condition. I post this entry from the Seattle airport as Amy and I await our flight to bean-town to take action on whatever outcome we're presented with.
We're moving forward in faith that we'll be guided. Thanks for your faith and continued prayers.
Seth and Amy