Team alpha!!!!

[KLCTJC]

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!! No active disease! Stable and improved!!!! Clearly medication has helped!!! I squealed and cried at the same time!!! Will see what neurologist says Monday but can’t see how they will not be happy! Thank y’all for all of your support!!! I appreciate all the positive well wishes. God blessed me and my family today!!!

[Spanelmad]

Glad the big girl pants worked!!!IIs it a happy accident that it's working on the MS or do they use it for this? Whatever it's fantastic news ,hope your celebrating over the weekend.

[KLCTJC in reply to Spanelmad]

Kind of a happy accident…..we use alpha they use beta. Beta and alpha are super close in action. Studies from the 90’s showed potential with alpha for MS but beta is safer and of course they now have a thousand other drugs. An educated experiment on my part. Convinced everyone to let me try it and see. So far seems like positive results. Will ride this wave as long as I can. Thanks for all the support!! Definitely celebrating!!!

[PhysAssist]

TOO COOL FOR SCHOOL!!!

Big Props and Kudos!

I knew you'd do well if you studied up for your big exam!

I'm so happy for you!

Just super awesome!

[PhysAssist in reply to PhysAssist]

It would only let me post 1 graphic so here's the other one[s] I have for you...

rock

[PhysAssist in reply to PhysAssist]

That was lame- it's supposed to be an animated Giffy that has scintillating colors...

Maybe this is better...

rock

[KLCTJC in reply to PhysAssist]

They are all great!!! Thanks for all your support! It is so appreciated

[hunter5582]

GREAT NEWS!!!!!!!!!😀

[Meatloaf9]

Excellent, long may it continue. Best always

[EPguy]

" had a new one and it has shown improvement" This is your MS lesion improvement since starting Bes, is that right?

I assume the lesions get better only by treatment, not spontaneously. Quite thrilling. IFN-a has been proposed for Sjogren's but that angle has been long dormant. Since it was a cause for me it's of course contra indicated.

I've posted before that the choice of IFN alpha over beta for MPN was long ago and not especially informed. The thought is the safer qualities you note for beta might have been enjoyed by MPNs if the early MPN docs had selected it as equiv but safer as they did for MS.

It's reassuring there are many options for MS should a need arise.

[KLCTJC in reply to EPguy]

Yes, that lesion came between diagnosis and the start of Besremi. And showed improvement today and no new lesions. I often wonder if I was able to start one medication before I knew the other existed if I would have ever known the other issue existed. I told MDA doc I was starting either beta or alpha. Got alpha faster. So will keep hoping this works. Keep hoping you find something similar. Thanks for checking on me. And will keep you posted! I think they should try beta again for MpNs. Would be worth a try!

[EPguy in reply to KLCTJC]

You were a candidate for a case study of beta, and quite possibly could have been a subject for a research paper. But it makes sense you used the readily avail Bes.

This report is relevant, I've posted on it before i think but with my new perspective I'll do a detailed post inspired by your journey.

ncbi.nlm.nih.gov/pmc/articl...

Sjo has zip right now but it's about to change.

[KLCTJC in reply to EPguy]

You sent me similar articles and it helped me so much! 100% I think they should revisit beta. Guess if this quits working I could try beta. I am good at being a guinea pig! Will be praying for something for you! Your story has helped so many! I always appreciate your input and advice. I am so grateful for this site and people like you!

[brightlys]

Ahh, so glad to hear it!

[Anag]

I am thrilled for you! Keep learning! Eat super clean, live super clean and your body will thank you over and over! You’re young and you will have many good years.

Friends of mine are having great success with MS and the Coimbra Protocol. My daughter too. You need a doctor who can steer you right. There are details to the treatment that must be followed. Costs next to nothing. 😃

[KLCTJC in reply to Anag]

Interesting you bring that up. I have been on vitamin D for over a year. And just on my own made different decisions little things like during the work week I eat super clean for breakfast and lunch, hard at night because of my husband and my kiddo. Hubby is a meat and potatoes guy! And I ride my peloton bike 6 days a week with one day off. I never had bad cholesterol but lowered it even further. Cut down on alcohol too. Hard to explain but yesterday I was playing with my daughter and I felt more alive than I have in a while. And my faith is stronger now than ever. I appreciate the advice and all the support! Prayers for good news for everyone!!!

[Anag in reply to KLCTJC]

I take 60,000IEs of Vit D per month. You should be in the upper range of the acceptablr zone (not middle or lower!). Thats deficite.evening and night eating is hard on the body. The more veggies you sneak into their foods, the more theyll be wanting it. Add lots of olive oil while cooking or after.

I have had moderate high cholesterol for te last 30 years (220-250). My arteries are beautifully clean. important is the ration: under 3. Low cholesterol is not good. our brain in made of it. If youre too low, you brain will be hungry. Careful. I take my hat off to you, that you exercise! Yay! But never stress too far. That will work counterproductive for MPNs and could raise thrombocytes, etc. The covid vaccine ruined my leg veins and my brain was increasingly dement, I spent almost €1500 at a bioresonance doctor, who was able to step-by-step remove the spike proteins. my brain is back again and so is my energy. in the meantime I have been doing a lot of homeopathic and nutritional changes to support my leg veins and heart valve which has been damaged d after taking Anagrelide for so long. Im on Besremi now, d which is causing a lot of pain and numbness in my hands and feet and neck. sometimes it is completely debilitating. I stop in between for a while and then restart at lower amounts. I don't know how long this will continue. platelets remain around 550 which is very acceptable. there's no other alternative for me since HU causes horrific neurological symptoms and anagrelide is damaging my heart.

I am PN specialist says that there are new drugs coming in the next few years which are promising for ET Calreticulin.

it's so wonderful to hear that you are a believer. so am I and it has made life so fulfilling in so many ways. I have courage and strength and there's always a positive outlook no matter what happens. I don't think I have ever been able to enjoy my life as much as I do now just haven't turned 59.

God bless you and your family! ANAG

[KLCTJC in reply to Anag]

God bless you too!!!❤️

[Gaithersburg]

Excellent news

[Minify]

wonderful news! I am happy for you!

[dbus1417]

boom 💥👌🏽

[KLCTJC in reply to dbus1417]

Love it! Have a great weekend

[Cja1956]

Wonderful news!

[GardNerd]

This is so great to see!!! Excellent news!

[Mostew]

Great to hear your positive news. Best wishes to you x