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Posts (30)

Jan 8, 2018 · Huntington's Disease in Brain & Nervous System

My husband’s cousin died from this horrific disease. Everyone thought he was using drugs or alcohol with his slurring, behavior etc. It was too late. It progressed rapidly. He got violent at 2 nursing homes and was ‘kicked’ out. He was in his 50’s. There can be a carrier of the gene in the family. No one else has seemed to have this but some of his siblings were tested and their dad was a carrier. Also he has a young adult daughter but she doesn’t want to know if she carries the gene. I am so sorry. I hope you can find a support group. We do have a few around this area. It was an awful way to watch a loved one. But yet so many are….

Oct 13, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

Not a repeat….I am laughing with you only because I have literally TRIED most everything for constipation with the iron and calcium I need (my body doesn’t store iron)…My doctor doesn’t approve of laxatives….nor do I but I go from this to that and never find anything that works long term. I am doing stool softener with gentle laxative now. Tried dried figs (prunes, black licorice, oil, probiotic….don’t do a thing for me)

Oct 13, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

My 1st fracture was my T9 vertebrae in my back. I was playing volleyball and raised my arms above my head. I didn’t jump, fall…nothing. I was 35. After going to PT from July 4th(date of incident) to Sept 10th(date of diagnosis of fracture)…I was given a DEXA scan. My numbers were -4.7 for hip and -3.8 for spine. PRE-menopausal too. My clavicle was from grabbing the phone quickly as to not wake my husband who had had surgery. It was 3am. My ribs were random coughing, sneezing..and lastly my pelvis was falling (fainting). Between those times I had been on meds for the osteoporosis and then diagnosed with System Mastocytosis in 2003. Because I had 35% extra mast cells in marrow(by bone marrow biopsy) they are not as strong as they should be for age etc. I was on a ‘drug holiday’ at the time of the pelvis fractures because I had started so young on meds the doctor thought I needed a break(pardon the pun). I then was put on Prolia. Hopefully in Dec I will have the DEXA to tell me what that has done for me the last 3 years. My endocrinologist suggested I may go back to Forteo as it worked very very well for me.

Oct 12, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

I used Forteo for the 2 years recommended and had no side effects and fabulous bone building results. I’m 61 have fractured T9, pelvis, clavicle, ribs, breast bone.

Oct 11, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

I didn’t remember Forteo had to be refrigerated. I know my Interferon did and it was very hard when we traveled to Ireland for 10 days. They didn’t have good refrigeration and none in our rooms then. 2007. I had no problems giving myself shots….and had fabulous results with Forteo.

Oct 11, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

at 35 I was on Fosamax daily (for about 4 years), switched to Forteo injections for 2 years, back to Fosamax weekly. Then drug holiday….. pelvic fracture(5 of them), then Prolia (now completed Dec 2017 3rd year.) Hope to have DEXA scan in Dec and see what it says…doctor may switch me to Forteo again. I had great results.

Oct 2, 2017 · Treating Osteoporosis in Bones, Joints & Muscles

Age has little to do with it. I fractured my T9 vertebrae lifting my arms over my head. I was 35. You should get a borderline DEXA scan. I totally understand. I broke my clavicle reaching quickly for the phone, broke 2 ribs sneezing.

Sep 8, 2017 · Mast Cell Activation in Blood Cancers & Disorders

Welcome to this blog and besides the health issues you have I DO UNDERSTAND how frustrating health, mental or physical, can be. Trying to get someone to understand, to find something, to give you answers…And wanting to give up. I have waves of that. Tired of the medication, tired of doctors, tired of issues…But I talk to someone. Parish nurse, doctor, counselor… Keep fighting. We have to be our own advocates. I’ve learned that. Getting a referral to Mayo helps. I have systemic mastocytosis. I was diagnosed 14 years ago. It’s rare, incurable but treatable and am lucky to be indolent at this time. Please keep fighting for YOU….You are worth it. Prayers…