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Face to face with Neuro tomorrow

xfieldok

xfieldok

Well-Known Member
Messages
4,182
Location
Lancashire
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Wish me luck. I suspect the steroids will increase :(

It is for the MG which seems to be deteriorating, big time, but I suspect that I will be back on the insulin sometime soon.

Stay safe everyone.
 
Hi @xfieldok sorry to see that you are having an MG flare up I hate MG when it's not behaving it's self and it seldom does I know that for me this time of year it does worsen. I hope your neuro does not have to increase your preds he could maybe try one of the alternatives or maybe IVIG to be honest that's about the only thing that's ever really helped me but as it's rather expensive they don't give it out that often if you have not had a course of IVIG it might be worth asking your neuro about it.

Any way best of luck for tomorrow and I hope it all goes well for you I shall be thinking of you
 
Hoping for the best.
Fingers crossed for you.
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And, don't forget to come back and get it all off your chest afterwards, @xfieldok . There are many listening ears on here.
 
Thanks for all the good wishes. The wheelchair was a godsend. It was the first outing for it. I had to. Be dumped at the main entrance whilst hubby found parking. Was able to get in and make my way to the apt all by myself!

Myasthenia gravis is deteriorating. Reintroduced some tablets and if no improvement will have to double the steroids. :)

Will have a phone consultation end of October. I am only the second patient he has seen face to face since lockdown started.

I feel a bit more optimistic now. The stairs are becoming more difficult. I can't get out of a chair
If it doesn't have arms. Got stuck in the bath. All sorts go through your mind. Hopefully things will improve.
 
What a downer!
Impressed you got the actual appointment though. Perhaps we should re-name you HRHxfieldok.

is this the time you start looking at stair lifts and one of those chairs that can stand you up?
We have been looking at a stair lift for me (knee deterioration) and recently organised a superchair for my mother. V impressed with the chair. She finds it great.

if and when you go through a better phase, you wouldn't need to use the motorised part, but you would still have a v nice reclining armchair.
 
xfieldok said:
Thanks for all the good wishes. The wheelchair was a godsend. It was the first outing for it. I had to. Be dumped at the main entrance whilst hubby found parking. Was able to get in and make my way to the apt all by myself!

Myasthenia gravis is deteriorating. Reintroduced some tablets and if no improvement will have to double the steroids. :)

Will have a phone consultation end of October. I am only the second patient he has seen face to face since lockdown started.

I feel a bit more optimistic now. The stairs are becoming more difficult. I can't get out of a chair
If it doesn't have arms. Got stuck in the bath. All sorts go through your mind. Hopefully things will improve.
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Glad it wasn't quite so bad and steroids not upped yet hopefully the other meds will work for you, chairs are difficult I know and getting stuck in the bath can be embarrassing and worrying I know, one way I have found to deal with stairs is to crawl up them or sit on the first step then shift yourself up to the next step aided by pushing down with arms quite often go down stairs on my bum a step at a time.

When had been diagnosed and eventually got home from the hospital Judith would have to leave me at home sat in a chair and go to work and then when she returned home get me out of the chair it's no fun being stuck in a chair is it.

But thing is MG is so variable you could wake up tomorrow feeling like you could run a marathon.

And remember snowflakes rule OK.
 
I have hat a total of 3 episodes where I suddenly felt really good. It didn't last long but it gave me hope that something was trying to work. Very occasionally I allow myself to wallow a bit, but I am incredibly lucky compared to some.
 
Brunneria said:
What a downer!
Impressed you got the actual appointment though. Perhaps we should re-name you HRHxfieldok.

is this the time you start looking at stair lifts and one of those chairs that can stand you up?
We have been looking at a stair lift for me (knee deterioration) and recently organised a superchair for my mother. V impressed with the chair. She finds it great.

if and when you go through a better phase, you wouldn't need to use the motorised part, but you would still have a v nice reclining armchair.
Click to expand...
Absolutely not! The ideas are tickling the back of my mind, but I am not ready to give in just yet.
 
xfieldok said:
Absolutely not! The ideas are tickling the back of my mind, but I am not ready to give in just yet.
Click to expand...

Friends of ours, several years ago, bought a house with a small lift in it.

Before moving in, they had planned to take the lift out, to enlarge the utility/boot room, and create an additional en-suite upstairs, but once they had lived with it for a few weeks as other works were happening, they decided to tart it it's "space", because they found it great for getting tools, boxes, small furniture and laundry upstairs.

There can be silver linings in these things, sometimes, although I do appreciate these challenges mean very different things to you.

Sounds like you had a decent appointment though.

Keep on truckin'.
 
Hope it goes well tomorrow and there are a few silver linings @xfieldok
 
Friend of mine with CP has had approval for adaptions in her house they are going to put a wet room in and also a lift the lift will go from her front room up through the ceiling into the master bedroom directly above sounded pretty good to me when she explained it.
 
xfieldok said:
I have hat a total of 3 episodes where I suddenly felt really good. It didn't last long but it gave me hope that something was trying to work. Very occasionally I allow myself to wallow a bit, but I am incredibly lucky compared to some.
Click to expand...

Really admire your ability to remain positive. Hope the reintroduced meds help.
 
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