Any experience with taking Kinsula?

@elm123 We are at this same crossroads. My husband has had the initial blood tests, and will be scheduled soon for the MRI. PET scan is booked for early June. Will the these blood tests/MRI/PET scan give a diagnosis, or can that only come from a doctor? I’m worried the diagnosis will depress him further (and he’s already down in the dumps, pretty much every day). Just want to know what to expect (as much as possible so I can prepare myself and help him.). Best to you and your husband! Thank you for writing!

@elm123 We are at this same crossroads. My husband has had the initial blood tests, and will be scheduled soon for the MRI. PET scan is booked for early June. Will the these blood tests/MRI/PET scan give a diagnosis, or can that only come from a doctor? I’m worried the diagnosis will depress him further (and he’s already down in the dumps, pretty much every day). Just want to know what to expect (as much as possible so I can prepare myself and help him.). Best to you and your husband! Thank you for writing!

@2me so it has been a very long, exhausting process the last eight months or so. We decided to switch neurologists and go to one affiliated with a medical school and also specifically working with dementia patients. This Dr. Ordered a lumbar puncture instead of a PET scan and a 3day infusion of thiamine (b1). So he had the blood test, an mri and a lumbar puncture which all showed Alzheimer’s. He also had the thiamine infusion and stopped drinking alcohol, after which he seemed to improve and has remained relatively good for the last three months. The neurologist recommended we wait 6 months for a better baseline due to his improving with the infusion and no alcohol. That is where we are today. Confused and anxious basically since I know the leqembi and kisunla drugs have to start early to be effective. I asked the neurologist and he said six months would not make a difference - so I need to place my trust in someone.

Sorry for such a long post. It’s so hard to know what to do! Thank you for reading this!

@2me We had the PET March 17 and it was to check the amount of amaloyd in the brain -provides another piece to the puzzle. Unfortunately we have many questions for the "infusion center" in order to decide but hope to see them in the next week. My wife also has the APOE4 and the ARMS2 genes, which further complicates the situation.
All the best to you and your husband.

@elm123 You are fortunate to have access to a neurologist affiliated with a medical school! “Confused and anxious” is very understandable. No alcohol is showing a difference for you! That is very interesting. My husband has a glass of wine most nights…maybe discontinuing that would help! And there is probably no way to know if that is making the difference for you, or if the infusion of b1 is…I hope you’ll update us here…Best wishes to you and your husband!