@sheeva888, @ingritamoreno, @johnbishop, and all...Well, you are wonderful! As always, the dear folks on the Mayo Connect site always hear you and reach out with caring and great information and support. Thanks to you...

Since I sent my message asking for help, my son has received a report from his new neurologist, a wonderful doctor who first diagnosed and treated him 10 years ago, after 10 years of horrible medical treatment with no diagnosis and no treatment other than opioids and accusations of drug shopping. Those days left a deep mark on him and he has trouble discussing with doctors openly about his real levels of pain, various symptoms, and emotional issues. He has severe trust issues with the medical field after so many hellish years with no help or apparent caring. He's now back with the original neurologist who's very much up on developments in brain health and treatment. Including possible infusions!!!

The report indicates strong suspicion of Stiff Person Syndrome, with underlying Dystonia and other autoimmune involvement. It all makes sense now. I have several autoimmune diseases that have hit me hard and been challenging...first one is Sarcoidosis at age 40! His Dystonia hit him at age 35! Wow...what a bit of historical insight.

He has ordered a list of bloodwork testing including the ones you've mentioned and others. I've ordered all hospital and doctor records from the past several years and the imaging unencrypted to send to this doctor.
They are advising him to increase gentle activity which was impossible until this month since I helped him taper off Tizanidine and onto Baclofen. What a job, but what an improvement in his movement ability, reduction of pain, control of muscles...and naturally his mental state. Currently, he's on Seroquel for sleep and anxiety, but you are taking diazepam...are you finding it helpful?

His sleep is quite a mess, for many years he woke up screaming with terrifying night terrors and had few nights with peace. Now, with Seroquel and the changes in other meds during the day, he gets several hours of good, restful sleep every night. Also, he has a precious Havanese dog, only 8 pounds, who is his best and only friend. She is truly a therapy dog, helps him relax, and feel loved and they have a friendship, and partnership that works miracles. I'm applying for a therapy dog certificate to make it official and help him take her wherever needed.

He is now walking the dog more often, actually going into our pool now for the first time! After I shared some things I learned from the PT in my therapy pool sessions, he's finding the water and heat a great help. He was attempting to swim in deep water, causing increased electrical currents throughout his body. By holding on with his one usable hand/arm in the shallow end, standing with good balance, he simply walks in place allowing the water to move around his body massaging and doing its thing, and his legs are getting a good workout. He mentioned last night he's feeling stronger, his legs and calves are stronger. It's another miracle...

He's lost 10 pounds, intentionally, in the last 2 months, by improving his eating of course although he eats a well-rounded diet, drinking less caffeine sodas!!!, increased exercise, more general movement even standing and moving while listening to music or watching tv. He's now able to do these things with the med changes!!!

This doctor also addressed my son's several vitamin and mineral deficiencies. His body doesn't absorb B12, B6 is low, D is low, very low Testosterone, low magnesium, and others. He may have some infusions to help with some of the deficiencies and also possible inflammation in the brain. He takes Cerefolin, a superb prescription supplement for low B12 and it addresses other brain issues. It's one of a kind, difficult to get, and quite expensive not covered by insurance...$250 for 90 day supply. We just found the manufacturer and get it for $199. directly from them. Only took a decade...but, who am I to scoff at another miracle. They seem to be flowing into both our lives for several months in multiple areas. I'll be in touch soon after learning more...

Gratitude is overflowing in our lives right now!!!! For you and his new doctors and my doctors and help with his life for the future. I'm so thankful to my God for guiding us to the angels in our lives, helping us so much.
Blessings to you all...Elizabeth