Badges (1)

About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (7)

Dec 29, 2016 · Myasthenia Gravis in Autoimmune Diseases

,,,thank thee soooooooooooo much for your response, “kp” … think have finally figgered out a wee bit bout using this site! ????? MEBBE!
have to admit since i wrote …. mucho fatigue! still hootin with virus caught befo Cmas. aaaaaaargh! However …. have a wonderful N.P … my primary …. we have a plan. She feels we go on n get bwerk dun as planned with additonal tests added (She has one patient .. MUCH MUCH younger than I who has MG and multiple other things with which she struggles …. so young.) So Jenny is more familiar than most docs with this. After the bwerk ….. and in the meantime ….. she is scoping out Dr. i mentioned in Durham at UNC … acutally is head of Neurology there. And at this time that is about as pro active as i can be. She feels and i do concur that the PPS may present a roadblock to full diagnosis. Fatigue is a part of PPS also. Right now … tis so at play ….. hard to do more than jes this short paragraph! AND … we are both revisiting a year ago when was hospitalized with dble pnu moan y. MASSIVE STEROIDS put in play even after five days in hosp ….. i decide i jes didna wanna die that way so after a week … QUIT EM ALL! HO! took months to recover …….. only AFTER hosp and five weeks later did the culture from Pul Doc come back wtih positive fer MAC-K. am wondering if that could be at play now …. so hard when a virus that mimics something else is invading yer part uv th werld if tis that er “dem bugs”! n so we muddle along.
To EVERYBODY …. if you cannot find some HUMOR in yer sityashun …. find some one who can …. or stay connected to someone who IS funny.
AND ….. Lafftah helps clear our dem lungs! mah wee dawg Rosy an i have a sing fest evry single day … i howl n she howls an u know whut? we kin akshully Harmonize! B u t FULLL eee! later snoopy!

Dec 22, 2016 · Myasthenia Gravis in Autoimmune Diseases

I have posted earlier in the MAC group but have just this week been told i need to be tested for Myasthenia Gravis. aaaaaaaaargh!????
Eye Dr. thought it was necessary to git er dun now. Have appt for bloodwork on the 5th of Jan. … fasting …. but i have learned that it does not always show up in bloodwork. ????? The bloodwork will not be back when I see my primary care doc on the 10th. Have hip replacement surgery scheduled for the 23rd. A friend whose mother struggled with and finally died from this auto immune “thing” recommended a Dr. James Howard … neurologist at UNC in Chapel Hill. i live five hours away! I have put in place all that was suggested to me in the forum on MAC. Have a date with ID doc in winston on the 6th. Also deal with PPS .. post polio syndrome. I am 76 years old an got the Polio virus when i was 4 during the epidemic here inN.C. Spent 7months in the “camps” that have been called The Miracle of Hickory, N.C. Learned to walk again an my parents NEVER treated me as a victim of anything … ergo i have never percieved myself that way! Have always been VERY active and an activist! . I have been attributing things that are new and “not nermal” HO! fer me to PPS. Am not sure anymore what is the right question to ask! My friend said Dr. Howard invented the machine that can test for this “thing” that will not make you feel lak you b gittin electrocuted! I have had tests that feel just like THAT several times in the past. PPS being the answer. Here’s a question. Do you know someone in Winston Salem, perhaps, a neurologist who is closer? Am supposed to have hip replacement surgery on the 23rd Jan. 2017 after having had to cancel surgery the 19th of this month as i got sick! I am SO GREAT FULL for this site. Thank you for this site!!!!!!!!!!!!!!! Merry Merry evrybody!

Dec 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

nelisabeth again … gon werry thee to deaf! HO! HOW do i find out where Dr. David Priest at Novant in Winston Salem is
the doc fer me? I liked him but was too sick to make much sense of what he said. My niece was with me and she, too, had a hard time …… we came away thinking the “bugs” were dormant.???????? another question ….. nothin ever shows up on plain x ray …. only the CT/contrast. Is there a dormancy period? okay …. off and at em!

Dec 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

…have already begun and man oh man am gittin th runaround! there is, however, NOTHING lak an EMPOWAHED WOMAN! nelisabeth and DID git printed out …. safely and attached to mah new book of evry step i take!

Dec 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Yes ….. Nebraskanse …. sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan …. puter incompatible. nelisabeth. gittin on it TODAY! HO!

Dec 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Oh Katherine, I cannot tell you how much this means to me! Have always been an advocate for others …. have tried to be for myself … but there is a terrible lack or lapse …. dunno .. of communication between doc to doc and computer at hospital being incompatible with other systems. aaaaaargh! so we all have been flying blind. It was already in my thinking to request a new
sputum test from the new Pulmonary doc here. I WILL DO THAT. My N.P. WILL cooperate. She is truly an advocate.
Thank you sooooooooooooooo much and yes, will see if kin figger out how to copy this off .. .if now will save. and forward to
docs. May i keep you posted? I do NOT believe i can any longer tolerate the steroids. At age 76 …. headin fer the big ol 77 ….
sometimes less is more. I so agree. Wish i could hug you in person!!!!!!!!!!!!!!!!!!! Peace …. me ol nelisabeth

Dec 11, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I don’t know if i am posting correctly! here goes. I am 76 year ol lady! Was hospitalized last Oct …. x-ray showed NADA. i do have COPD. For five days was treated with MASSIVE steroids. Hospitalist ordered CT/contrast …… sent me home on the Fri. after test saying it showed nothing and i was not getting welll there. So …. was sent home with MORE steroids. Could NOT function. AT follow up with MY N.P., she said the Ct showed
both lungs had pneumonia. She sent me to Pumonary Dr. He ordered a sputnum test. (they also did one in hospital but said nothing about it.)
Six weeks later, Dr. Pulmonary called me to come in …. told me i had Macobacterium Nebraskan….i do not remember how to spell it. His office staff left nothing to be desired … so when he made appointment with Infectious Disease doc at Novant in Winston Salem …. I live 34 mins away … I went myself to get discs, etc etc. Dr. Priest at Novant ….. even WITH directions from hospital could NOT pull up the CT himself. However he said the notes showed nothing signifigant. and dismissed me. I had of course by now on my own stopped the steroids. I was on Levaquin in hospital.
Now nausea was rendering me useless. On an intuition, saw ENT doc here in my hometown. He ran camera down my nose …. could not see any
infection but felt there was on and he put me on a hi powered antibody … Vantin? something like that. After prescribed time … no better. Still coughing up suds, pain … so went back to him. This time he did a sinus CT. showed very deep pervasive infection. Put me on rounds of 3 different antibiotics
with baby dose of steroid …. for six weeks. In the midst of the last round …. the nausea began to abate. and i DID get much much better … until ……….
began to experience upper respiratory symtoms again early November of this year. so bad on a weekend …. went to Urgent Care. would NOT inhale steroids ….. xray showed nothing … accepted Albuterol inhaler and Levaquan. sp? The following Monday kept a pre op apt at hospital for hip replacement the 19th of this month. I continued to get worse however. Was working with scheduler nurse at Orthopedic surgeons’s office …… followed through with next pre op appt. bloodwork slightly … very minor .. off …. everything else ok. no MRSA .. urine fine. When Lisa (wonderful woman
from Ortho) called me with results she could clearly hear i was not well. Intervened and got me into see MY N.P. She took one look and said OH MY! HO! told her i wished to go on with surgery but wasn’t sure i could and she and I are going to make decision together. She immediatly took me off
Levaquin .,.. put me on Arithro .. zpak and again … baby dose of steroid which i am tolerating. She had done a little research into the MAC i have
and finally said ….. NO … to surgery. So … it is postponed. I absolutely do NOT KNOW WHAT TO DO NEXT.
The Dr. i saw in winston salem at Novant, Dr. David Priest had given the go ahead for surgery. We now have a new Pulmonary Dr. here in Elkin where i live. My N.P. said she did not think a CT/wcontrast would telll if pneumonia or MAC and my bloodwork did not call for CT. BUT … she is now wondering if that is what i had a year ago. ??????????????????????? Having had paralytic polio when young …. was several years ago i learned about Post Polio Syndrome. Verified by docs and spinal fluid. Fatigue is a part of PPS …. as is pain, etc …… but i can cope with that. I meditate ….
exercise … have wonderful caring friends .. have been an activist all my life but no longer.
Any ideas folks? There has been a dreadful upper respiratory virus going round here ……. it is just so hard to figger out what is tit and what is tat!
I do MAKE myself MOVE. But the fatigue is awful. and i do hurt in right lung area with this. probably all the coffing!!!!!!!!!!! ??????????
One question i do have is …. can “dese bugs” migrate? Is that a sensible question? I quit the FLucotinase…sp? Zycam spray seems to help
much better. I was told that many people are walking around with this particular MAC and don’t even know it. The first doc who found it said i could have gotten it anywhere. I garden assiduously and he thot probably there ….. as am inclined to continue working if i get poked er scratched er whutevah! Have to work on my bum because legs are not strong enough anymore from PPS. whatta mess! HO!
I do know that without HUMOR ….. none of us could put up with whatever it tis that we deal with. That and meditation are my go to AND
i do exercises in the hot water of the BATHTUB!!!!!!!!! It CAN be DONE! hO! Thank you for taking the time to read this if i can figger out how
to get it to stick! nelisabeth