Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 08-31-2021, 07:48 PM #1
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default Help from My Pain Clinic

Very worn from the Clinic appointment today. Wanted to at least say a bit. At last some good news. I had an extensive steroid treatment today I wasn’t expecting at all. The head PA there is a geriatric nurse too and she has known me a few years. She also discussed my oxygen and coming back next week to see how today worked for me. She had done reading on my records which I had complained wasn’t done last time. She didn’t see me last time. I will discuss more later. She had some bad info as I said here is out there but she is the one person who is more on my side I have seen in past year. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (09-01-2021), Lara (08-31-2021)

advertisement
Old 08-31-2021, 08:17 PM #2
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Thumbs Up

Hi Sculptor,

Finally a little good news. You've been so patient.

Rest up and take care there.
Lara is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (09-01-2021)
Old 09-02-2021, 02:31 AM #3
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

I need some encouragement in getting through the next few days when steroids will be more kicked in and I will be more stable thru body. I so so miss being able to go for a walk outside especially around trees. At this time I physically can’t do it. I made a couple calls today and one text to work getting a homecare person back again. I need to be less isolated. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote
Old 09-02-2021, 11:09 PM #4
Atticus Atticus is offline
Member
 
Join Date: Feb 2020
Location: UK
Posts: 269
3 yr Member
Atticus Atticus is offline
Member
 
Join Date: Feb 2020
Location: UK
Posts: 269
3 yr Member
Default

Quote:
Originally Posted by Sculptor44 View Post
I need some encouragement in getting through the next few days when steroids will be more kicked in and I will be more stable thru body. I so so miss being able to go for a walk outside especially around trees. At this time I physically can’t do it. I made a couple calls today and one text to work getting a homecare person back again. I need to be less isolated. Sculptor 44
Hey Sculptor44

I'm curious about how you chose your name "Sculptor44"

Take care buddy

Atty
Atticus is offline   Reply With QuoteReply With Quote
Old 10-15-2021, 11:07 PM #5
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

Hi . With getting Covid my body ,my MG is sure worse but also new stuff. Going to ER again tomorrow. Yesterday was terrifying. My chest and breathing in a bad bad place put I tried to straighten kitchen before my homecare person came for errand. Yes I pushed and honestly tho it was brief. When sat my chest seemed odd and miserable. I did my pulseox and my oxygen was 70% with 24 as heart rate. I thought the 24 was a glitch but over next 20 minutes it stayed at 24. My oxygen very slowly but finally got up to 90% . Nothing takes me down faster than my fluids going screwy. Covid for some reason messed them up again. First few days my phlegm was like thick paint that would choke me. I seriously hydrate well so I do my best. I just caught the message on WHY I chose Sculptor 44. It is because I was , I am a Sculptor. I wish I knew how to put a photo in here. I would share one of my female figure heads as an avatar. I so miss the clay and the wood and the stones I used in the later years as a much easier material to create with. Sculptor44
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (10-16-2021)
Old 10-16-2021, 03:17 PM #6
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Default

Hi Sculptor, I'm not surprised that Covid hit you so hard considering you already have such complex breathing problems and all the rest.

A heart rate of 24 per minute would have me either in the emergency room, as much as I hate it, or at least call the GP or the nurse. That seems like equipment error to me What is your usual heart rate?

To add avatar you go to UserCP in top left corner of the page. On my screen it's under the NeuroTalk Logo.

Then you just scroll down until you come to
Edit Avatar
Make sure you click on Save Changes

You can add an image into your post. With the Reply Post / Post Reply open

https://www.neurotalk.org/faq.php?s=...l&titlesonly=0

Below the smiley faces and other post icons, you'll see Additional Options

Click Manage Attachments.
Window pops up
Click Choose File.
Click Upload

Last edited by Lara; 10-16-2021 at 07:01 PM.
Lara is offline   Reply With QuoteReply With Quote
Old 10-17-2021, 10:14 PM #7
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

Thank you Lara. Yes it is inexplicable that I didn’t call a doc. My life has become insane. My choices and environment is poor. I thought it could be equipment but the oxygen improved to 90 over 15 min. My chest was in an unusually bad place all very uncomfortable in a new way. It got worse when I did the brief pickup in kitchen. I probably would have made a different decision if my brain hadn’t gotten so much worse. I will just say I was so very deeply affected by going to Iowa City for help in 2018 when my legs quite workin on a weekend I don’t know who to trust with my body . When you are the only one in the room that knows what is happening is very wrong which was me as I was being checked into a nursing facility still unable to walk it’s like watching a horror movie. I knew my legs would work again. They didn’t. My legs work. Perhaps I walk in a difficult to watch way but by God I walk! It’s gonna be a hard week. My daughter upset as her daughter now has encephalitis. I will call my Neuro and try find a steroid shot and keep my self fed. She wants me in a facility again. It is a mess. A former aide came back. That is helpful. Sculptor 44
Sculptor44 is offline   Reply With QuoteReply With Quote
Reply

Tags
clinic, discuss, reading, time, wasn’t

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Pain Clinic Becca71 Reflex Sympathetic Dystrophy (RSD and CRPS) 2 07-02-2016 07:52 PM
Pain clinic Geordie Reflex Sympathetic Dystrophy (RSD and CRPS) 18 09-09-2013 08:37 AM
looking for a new pain clinic BIGT49 New Member Introductions 3 10-24-2010 01:24 PM
going to the pain clinic Jennelle Reflex Sympathetic Dystrophy (RSD and CRPS) 16 07-28-2009 12:17 AM
Pain Clinic in CC daniella Peripheral Neuropathy 23 07-07-2007 08:10 PM


All times are GMT -5. The time now is 07:43 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.