I can't tell if pictures came through of my email or not
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Mon, May 13 7:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
I can't tell if pictures came through of my email or not
Mon, May 13 7:12am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
@windwalker , Thank you for getting back to me so quickly. The DNA Test is an at home one that is from mayo clinic and then sourced out. It was heavily advertised around last Christmas and again at Mother's Day. It was sent directly to my e-mail hence my resent curiosity of the test. It is not something the doctor would order you just buy it at the mayo clinic website for 149.00. I would do it if anyone else had good information from it. I have so many diseases that I'm surprised I don't syndrome after my name. I would welcome any new information thru reliable testing. So I am asking the group if anyone has used this and had received helpful information from it. Thank you so much for your tireless devotion to our group. You really stepped up after we lost our group leader. You are loved and appreciated ♡♡♡
Thu, May 9 5:57am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
It has been a awhile since I posted anything but still reading all the emails from the sidelines. Wondering if anyone has used the mayo clinics genetic testing and was it helpful. I am thinking about getting one.
But Money is tight.
Thank you @suzie2017 and @windwalker. Thanks for your kind words. I first thought she was having mini strokes and having hearing issues . The hearing aids helped alots but there was still something wrong. Moms has been in a nursing home about 6 years and on hospice since January. Me and my step dad took care of her for a year before she went to the home. My anxiety is winning the battle most of the time with fidgeting and hand clenching and pill rolling (where my forefinger and thumb keep making a motion like there is something beween them that I'm rolling into a ball) not being able to complete a task. ( I am unable to make or answer the phone calls and its hard to explain it because I don't understand it myself) . My slow speech and stutter are apparent signs. Now my fingers and toes are twiching and have a mind of their own all day and at night too. Recently i have been tripping over nothing and falling into walls and furniture. Mom had hulusinations and she only told me about them after her diagnosis.
She said she knew they weren't real. I thought HD was a rare disease, but just like ntm, people dont talk about them enough. Sights like these can do wonders so people dont feel alone even with an isolating disease. Well thanks to everyone for keeping the conversation going. Katemn would be proud and is always looking out for us.
@tutti, hope you are doing ok like most of us just hanging out in the background of this sight and soaking up the information when we can. I have been on disability and medicare for 14 years. I had a back injury while doing private duty nursing trying to help a patient get out of bed. I had a failed back surgery after trying everything else. I tried different nursing jobs but could not continue working and taking medication. I was denied disability the first time and appealed on my own and was approved the second time around. I have heard they almost always say no the first try so keep appealing until you are get your benefits. MedIcare is a benefit that come along with my disability so if you are not getting it you should contact your social security office. They deduct the premiums from my checks. It's a secondary insurance to my husbands for me. I have treatment resistant deppression, anxiety and had a hard time concentrating and finding my words sometimes. I sought many opinions from many specialist and was taking mother with me to many of my appointments. A neurologist notice symptoms of Huntingtons chorea in my mother at my visit. We both were tested and have the defective gene and will develop debilitating symptoms as our brain cells die. Recently I had a knee and foot injury just doing chores at home i started loosing my balance and tripping over my own feet. My physical therapist is helping me and my walker is a necessity now. I love everyone in this community . Im trying to keep up to date on this sight but its very hard and sometimes i have to force myself to delete messages. I saved some messages for reviewing at a later date. I hope everyone's memorial day was a good one. If you cannot work you should get disability and Medicare through the social security office that you have already paid for. Take care and stay strong!
@windwalker, I believe it was called vascular and interventional radiology. Where they cauturize, burn, the blood vessels from inside to get the bleeding under control in the lungs. Hope you are staying well an staying strong!
@lainey, hello to all in the group and I hope everyone is staying strong. I know it is very hard to drink something your body is rejecting. Our gag reflex is automatic and mine is extra sensitive. So I add some juice to my water to flavor it and using a straw might help to get past the gag reflex while drinking thickens liquids. Best of luck and good health!
@hopeful33250 , @dolan, @oldkarl , and others on the Huntingtons and brain disorder group, I live near St. Louis, missouri. Where are you finding good care? What hospital or doctors are you getting care from and in what location? I am reading your post and researching recommended resources. You guys are so helpful to me and to others. I am so thankful to have others tell their experiences that way you don’t feel so alone. If i cant reply it is not because you are not being heard. I will be listening!