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Posts (10)

Mar 4, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you, Katherine. I saw it and will discuss with pulmonologist.

Mar 4, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi there — I missed the connection on the postings. Will you please tell me what the lung exerciser is? Thanks, Anne

Feb 27, 2017 · fibromyalgia pain in Chronic Pain

So kind of you to care for your BF. Don’t forget yourself. I’m sorry you have to put up with someone who is taking the heart out you. I’ll pray for you.

Jan 30, 2017 · fibromyalgia pain in Chronic Pain

Thank you for thinking of me. The MRI’s showed no significant stenosis. We’re thinking now that it is sacrililiosis (sp?) because of butt pain and leg pain and weakness. Anti inflammatories seem to be the best bet for me right now. I also see a chiro regularly. I had extensive back fusion some time ago (L2-S1) with rods so it’s a mixed problem. I’m not sure anymore, specifically. I still find Gababentin very helpful along with moist heat. I also find it comforting to know that I’m not alone and that its significance pales compared to the extreme suffering of others. Take care.

Jan 29, 2017 · fibromyalgia pain in Chronic Pain

Thank you for reminding me what at times has helped! Sometimes I can’t remember all that I’ve tried.

Nov 4, 2016 · regarding chronic polymyositis treatment in Autoimmune Diseases

Rama, you might take a look at the website myositis.org. It offers many different directions from up-to-date information, group talk, latest clinical trials. They also sponsor web programs that you can signup for. Research papers that are referenced can offer further reading. Give it a try, Rama, if you haven’t already.

Nov 4, 2016 · regarding chronic polymyositis treatment in Autoimmune Diseases

Hello Rama, as I understand current/recent treatments your age is certainly a plus for you. It seems that my brother had this disease well before it was recognized — perhaps 2 decades or more. Just a very slow weakening that his doctor felt was due to poor physical fitness. So, good for you that you have some treatment ideas at your young age. I’m sure you must be frightened by the illness and probably have read enough to put you in a dark place. However, unlike by brother who did not reach out to even as much as talk about himself, you have done yourself well by contacting others. This is a very strong asset for coping. Of course there are dark issues threatening, but I can tell you that my brother lived a long life before he was incapacitated — fully participated in raising his 2 children; worked full time until he was 60y/o; enjoyed his life despite circumstances. He was also hopeful that “any day” there would be better research done on myositis and that some help/breakthrough would be around the next corner. Hopefulness. I admire your strength and your ability to advocate for yourself.

Nov 1, 2016 · fibromyalgia pain in Chronic Pain

Thank you for your thoughtfulness. I am hopeful for a cure too.