Skip to content
My WebMD Sign In, Sign Up

Announcements

Have you had a kidney transplant or are waiting for one? Then visit the Organ Transplant Community and the Diabetes and Kidney Community to share your experiences with other community members!

Are you newly diagnosed? Use the WebMD search engine to read articles like Understanding Kidney Disease.
FSGS
avatar
hjbearclaw posted:
I have had FSGS since 1998 recently it has progressed to stage 4 it was stable and I was considered in remission for the past 3 years I did not go to the doctors for 3 years so I don't know at what point it went to stage 4. I have tried many herbal therapies and accupuncture, I started taking blood pressure meds again, I have no support at home no one understands what I am going through my partner thinks it is all in my head. I have been drinking cornsilk tea and eating a no carb, no fat diet which seems to help a lot, fasting and praying helps too as well as doing sweats. I just can't accept that there is nothing I can do about this but wait for my kidneys to fail and get a transplant. I don't have insurance and the doctors are not telling me everything, I have to get copies of my lab results to consult with someone about it that doesn't cost me 200 dollars a visit. I have been looking for a support group so I don't feel so alone I know others are going through the same things I am. Itching, tired, sleep for days and other days don't sleep at all, anxious, vit D is depleted, uric acid is really high, losing a lot of protein, cholesterol stays high, blood pressure stays high with out meds, hard to lose weight, and the pain in my body varies daily, sometimes I can't move because of gout and other days I feel great, can't play soccer any more, but I have to do some kind of exercise. I just want to find a cure!!! Going on a kidney cleanse with cornsilk, turmeric, parsley, artichoke, and cherry, amoung other stuff fresh carrot/beet juice and good water and good tea and consume no grains/sugars and eat lots of fresh vegies and certain fruits. The dysbiosis diet has been working very well too from my accupuncturist. Thanks for listening.
Reply
 
avatar
jpclark responded:
hjbearclaw, Hi I have FSGS too, found out about this time in 2010. It has been a battle for sure but their is hope. I am doing really well now due to some great doctors and a very determined, diligent husband. I am more than happy to share
the names of the medication that I am on and the vitamins that
I take to help with the fatigue and other symptoms.
 
avatar
hjbearclaw replied to jpclark's response:
hi jpclark thanks for the response I am looking for someone to talk to that understands my situation, I would be interested in exchanging stories with you as a support kind of thing not sure if we can post our emails on here but I would be willing to contact you if you leave me your email or vice versa. I want to be able to email you on a regular basis if you want to be my pen pal.hjbearclaw


Spotlight: Member Stories

I was diagnosed with type 1 diabetes in 1966. In the 70s I was told I had protein in my urine and that I would be on dialysis soon. I eventually did e...More

Helpful Tips

Nephrotic Syndrome
My daughter,13 years old, was diagnosed this May with Nephrotic Syndrome. She never had any problems then all the sudden, her ankle swelled ... More
Was this Helpful?
15 of 26 found this helpful

Related News

Report Problems to the
Food and Drug Administration

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.