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What Is Your Primary Hurdle To Overcome In Dealing With Amyloid?
What physical ailments does Amyloid present ?
I get fatigue , tired , problems being out of breath and exhausted. My normal day is to try to keep active, but some days its thee impossible . All so I suffer with insomnia , constipation , and loss… read more
Are There Any New Treatments For ATTR Transthyretin On The Horizon?
You are welcome! I'm certain that Columbia Amyloidosis Center is up-to-date date on all of the clinical trials for depleter drugs.
Is Anyone Having Swallowing Problems?
I have problems swallowing pills AB’s sometimes a bolus of food gets stuck in my throat. I found that a Gastric Reflux diet helps.
May I Ask, What Are The Treatments For The Localized Amyloidosis?
I can only answer for me. Mine is in my throat and nasal area. I was told the treatment is surgery to remove the tumors they can safely reach and then radiation for those they can not. Last move is… read more
I I Have Worn The Ziopatch Twice. It Came Back Bad, At Least In My View. Can Anyone Tell Me If They Have Had Similar Experiences??
Results said zero sinus rate and predominantly AFIB. I have ectopic beats. Slow ventricular response and high PVCs rate, above the limit where some action is required. Any experience with these problems? I would appreciate input.
No, sorry.
Hi All Does Anyone Have GI Tract Issues Since Having A Stem Cell Treatment?
I’m hoping this is a temporary issue (like IBS) I’m guessing it could be a result from the chemo used during the sct in April. I’m thinking I may need to change my diet? I appreciate any suggestions
Thank you 🙏
Janice! I am so happy for you! It hasn't been an easy journey for you with the SCT, but sounds like it was worth it! Wishing you continued improving health!!!
Breathlessness At Night
My husband has been doing pretty well. Can walk a mile and play golf. He is 80. Just diagnosed with wild attr. But sometimes when we go to bed he has very odd breathing with periods of regular breathing alternating with very deep involuntary, almost gasping breaths. This keeps him from sleeping and he has to get up and sit in a chair. Has anyone else experienced this? Does it get better with vyndamax? He had a mild case of COVID in March. His ejection fraction went from 59 in October to 45 in… read more
Will be 82 in November and was diagnosed this past January. Can’t sleep in bed have been in my recliner at night for several years. Also have neuropathy and type two diabetes. Going day to day.
What Does A Typical Day Look Like For You Living With Amyloidosis?
I solved my edema problem by water drinking an electrolyte drink. My beverage of choice is unsweetened coconut water. Apparently electrolytes help push out excess water.
New To This
Just joined. Have asked questions but no replies. Just received hugs and added to teams. I am not very good with technology so may be missing something. Is there any real help or feedback on this site?
Yes there is. Lots of information under Resources and shared experience from members. Perhaps a friend or family member can guide you the first few times? All three best to you!
Joel
Has Anyone With ATTR-C Had Any Bladder Issues?
Blood in urine? urge incontinence? slow flow? Have drs related it to ATTR, neuro involvement or just the aging process? What has been the treatment and does it resolve?
I still have to deal with it.
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