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Has Anyone Had Palliative Care For Your Amyloidosis? If So, Was It Helpful?
I Have a Palliative Care RN come to my home. She has been very informative and helping me deal with all facets of my amyloidosis. Stanford, there is no charge for Palliative Care.
Will Diflusinal Stop Misfolding Of Amyloids?
Probably not. It’s just like a NSAD. Ibuprofen. It was discontinued in the US
I Have Wild Type ATTR And Very Painful Toes At Night With No Relief Any Body Else? Tony England
We use 1:1 THC/ CBD indica cannabis tincture topically and orally. Works wonders for hubby's constant knee pain. Not sure if it's a available in England. CBD might work also? But in my experience… read more
Question About Chemo For Al
My husband has his 1st chemo next week. He would like to know how it is administered & how long it takes. Do you have to stay for a period of time?
Thank you Jim9, I will let you know how he does today. He is strong & stubborn so I expect him to do ok. Prayers for you!
Hi All Feeling Good But Feet Go Numb And Harder To Walk. Any Suggestions To
See your neurologist. Get a Nerve & Muscle conduction test! My results were abnormal and attributable to Amyloidosis.
Change Photo
I uploaded a picture that was taken of me and it doesn't show my face.
How do I delete it and upload a better one?
Thanks for any help.
I changed my picture
Touch two horizontal bars upper left
Touch settings
Select upload picture.
Be ready with replacement before the doing the above.
Can ATTRWT Sometimes Leave Deposits In Only One Place?
Mine started with carpal tunnel and popeye muscle, but heart is the main target.
Has Anyone With AL Been On Chemo, Achieved Complete Response And Then On Maintenance Chemo?
Every time I ask how long I have to keep doing the chemo it’s always for the foreseeable future. I’m on it every other week. It would be nice to be done with it. At least for a while. 😞
I guess I should just be grateful it’s working!
Yes I am grateful it is working. Hoping to take a break also.
Has Anyone With Cardiac Amyloidosis Ever Had Burning Mouth Syndrome?
I will let you know how it’s going Jenny. I take 100 mg 3x a day.
At the beginning I was treated the same way. They had no idea what to suggest. I had to find out everything on my own.
Again, I have… read more
I Have Attrwt As Of Jan. Biop. Nuc T St Show Not In Heart -It Is In Nervs In Hands ,can Attrwt Stay In Nerv Without Going To The Heart
I really don't know.😏. My husbands started in nerve endings and he had carpal tunnel . But now sadly is in the heart. Take the drugs recommended to you.
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