Recent content by wellington

Toto - thanks for your good wishes. You are right, about the tips and helpful hints. Some have already come in handy! Ideally, I won't need any more, but it looks like I might. I see that I was 'almost' the lucky recipient of your one-thousandth post! Notme - I too hope he's wrong, and...

Hi folks Some time has gone by since my last post, and I have seen my neuro this week, so thought I'd provide an update. My neuro is increasingly certain that I have MSA (Multiple System Atrophy), but I don't have that diagnosis yet, so .... I'm hoping he's wrong. My symptoms (to save people...

Hi Filmmaker. Oh my goodness! What amazing news! And - while CIDP is no picnic I'm certain - how wonderful that you are no longer facing a limited future. I am just very sad that you have had to walk around in recent months with the knowledge of an ALS diagnosis and all it brings. I am so happy...

AKmom, you are an inspiration! Thank you for sharing your story. There's a wonderful lesson in it for people like me. All the best Lilly

Just posted - gone to moderation. My neuro calls it an 'FDG' PET scan. Lilly

Hi I saw my neuro on Friday and we discussed the possibility of me having a PET scan. While we have numerous PET scanning machines in Australia, none of them apparently have the capacity in terms of software, or access to appropriate 'pharmacology' (the radioactive isotopes beky refers too I...

I'm so so sorry. That all sounds so very hard, and at such a time when what you need is support. My only advice (and this from an introvert) is to take help where you can get it. I have never been a person who asks for help, but every time I take the risk and do so, I'm pleasantly surprised...

Thanks notme. It sounds like you DO know what I'm talking about. It sure can be scary. Luckily with the few tricks suggested by the doctor I might have it under control. Fingers crossed! Every time I think I have the measure of whatever this is, something new happens!

Woops! Sorry two posts. I'm still learning.

Hi - a quick update now I've seen my GP. She says I let the spasming get so bad (no torso support, no drugs) that it 'locks' my ribs in to a fixed position, thus limiting my capacity to get breathe in or out. And I guess she's right; it makes perfect sense to me now. I'm notoriously drug phobic...

Just a quick update. I have now had a chat with my doctor about this. It seems if the spasming gets too bad it 'locks' (my description, not hers) my ribs and they therefore unable to expand as they should. Of course if my ribs can't expand, I can't get the breathe in and out. Luckily it is only...

Hi Helen, thanks for your message. I went to my GP today. She said when the torso spasms get very bad they restrict the capacity of my ribs to expand and so compromise breathing; fortunately it is only one side (left). We agreed that I shouldn't let the spasms get that bad, in that I...

Thank you notme. You are right. Breathing is pretty important after all. If I find myself in this position again (unfortunately I think I will as this problem seems to be becoming more frequent) I'll take myself off to the doctor. I hope you are having an OK day.

Thankyou AKmom. You are a wise woman! I took valium and it is sooo much better. I also took my night time dose of neurontin earlier than usual. It is 8pm on Sunday here and I'm in bed packed in pillows and feeling better. I'm pretty sure it is the spasms that are causing the breathing issues...

Hi all I've got a problem and I'm hoping someone might have some wise words for me. The muscle spasms along the left hand side of my torso are going into absolute overdrive. My biggest problem (apart from the pain) is that my breathing is impacted. I keep trying to tell myself that there's...