angepugin
Status: Seem to be getting worse again after developing a tooth abscess. Chemo cancelled today because counts too low.
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- Hi AllJust wanted to quickly apologise for being out of touch and away from the site for so long.I have had a tough last 6 months and spent 5 of the 6 in hospital. In May I was admitted in crises. In the middle of my PLEX's My vascular graft they...
- Hi AllI started a post about a week ago asking you guys your experiences with colonoscopy. I got an email today from my Gastro saying he has decided that he wants me to have a procedure called CT Colonography instead of the Colonoscopy. I googled it...
- Hi All. I saw a gastro today for an abdominal bleed. He told me I need a gastroscope and colonoscope but stated that he is reluctant to do them because I am high risk with my diaphragmatic weakness. There are options of other non invasive tests but...
- Hi guys! I have been battling with very refractory MG for 16 years. The one question I have never got a satisfactory answer to - MG is auto-immune and so one would expect that with strong immune suppression the disease would be kicked in the butt??...
- Hi guys. I'm just feeling a bit worried about Cathi! Anyone been in touch recently? I know Cathi was having a terribly stressful time at the end of last year and am just worried that her silence means things are continuing to be rocky for her! Hugs...
- Hi Guys. Been away from the site recently because of severe crisis. I have been having alot of PLEX's over the last 5-10 years and have found recently that I am becoming very neutropenic about 2 weeks after a set of 4 exchanges. I know that the...
- Hi guys. I know that a while ago we had a discussion about simple tests of respiratory function and the SBCT was mentioned I think by B. Does anyone have the reference for the original article decribing how the test was validated? I have found...
- Hi all! Just wanted to ask those of you who are getting regular PLEX's whether any of you also experience severe anaemia which requires multiple blood transfusions? I get 4 PLEX everytime I go into crisis. I had 5 7 weeks ago and then another 4 2...
- First just wondering if any others are experiencing problems with the site? I haven't bee able to get on for the longest time!As you all know I have been having a really rough time for the past 12 years with my extremely refractory MG! Last year I...
- Hi everyone. I had cytoxan treatments once a month for a year about 5 years ago. My neuro has recently restarted the infusions but at a lower dose every second week. The strange thing is I am experiencing completely different side effects this time...
- Hi all! I'm back after a long abscence and great to be amongst friends again on the site. I have spent 8 months of this year in hospital with my MG and complications. It's been a nightmare and I have really feared for my life at times. Anyway here I...
- Hi All. I'm finally back home after spending another 2 months in hospital in crisis. It's been a hell of a year! Have found that recently although I am weak, taking the mestinon in my normal dose is making me worse. Anyone else ever experienced...
- Do any of you know if uncontrolled MG can be associated with frequent low grade fevers without infection. I know some other auto-immune conditions can be but was wondering if anyone else on this forum has experienced them like I do? I'm often not...
- Hi AllI've been reading a lot about prednisone here. Side effects and benefits. I know that in most cases prednisone is very effective in treating MG and can even effect remission in some cases. I however have severe refractory disease that is quite...
- Hi guys. Just need to vent! I am just out of hospital after another crisis. I have had 3 seperate crises one closely following the next and have spent 14 of the last 20 weeks in hospital, 7 of them in ICU. I can't help but lose sleep trying to...