Office of Steam Forum for Model & Toy Steam Gas & Hot Air Engines
The Regular Stuff: Chat, Buy, Sell, Off Topic, etc. => Off Topic => Topic started by: Jim on January 22, 2022, 09:31:28 pm
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Excellent News Jim.
You have many people cheering for you.
Keep your spirits high.
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Very encouraging Jim , sounds like a better than expected outcome , & earlier than you were thinking. I hope (& pray) that it just keeps getting better for you and Jen.
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Hope everything keeps going well Jim
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Hi Jim, Sure is nice to read your post. You are truly blessed!
You have all our support in your continued recovery.
Gil
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Hi Jim,
I check in to the forum every once in a while to read some of the new posts. I guess I missed this one.
Anyway I'm very glad to hear that the treatments are working so well.
Wishing you the best
Bill
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Glad to hear the treatments are going well and there's light at the end of the tunnel.
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Good to hear from you Jim. That's a tough road to travel but you sound optimistic and I sure wish you well!
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G'day everyone and thank you one and allfor the wonderful comments and also emails that I have recieved.
Its so very very much appreciated.
I've had two treatments of the IV/IG transfusions now and booked into hospital tomorrow as a day patient to have the third. My neurologist thinks that because I have responded to the treatments so well, its likely that it will be a monthly thing forever. At $8000.00 per bottle of the antibodies I am glad I'm not paying for it but feel blessed to be receiving it.
I am feeling heaps better, my eyesight is about 95% normal now and have stopped having to wear a patch alternating between each eye every hour. I still haven't driven, but hope to after this third treatment.
I was pretty worried there for awhile I can tell you all that, when the doc said that it can't be cured but it can be 'managed' and that I would have to have patience as it can take a year or more to find the right thing to manage it, I thought I was really screwed as it was so debilitating. Thankfully in this small country hospital an hours drive North of me a brilliant lady neurologist has only just started to come down from Sydney two days a week and I was one of her first patients. She is one of the most caring Doctors I have ever had the pleasure of meeting. She said the condition is so rare that most GP's would start and end their career without ever seeing a case......I wish my lotto tickets were so 'lucky'.
Once again....thank you one and all from the bottom of my heart for your caring concerns.
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Jim, forum is not the same without your wit and wisdom. Praying your treatments continue to give you relief and you get back to normal...even if it's a new normal.
cheers,
Roger
Amen Roger.
I hope the treatment is proving helpful.
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JIM,is it really you? It is good to hear from you. So many times I thought,
where the hell's Jim, he hasn't posted diddle in a long time. Then thought, hope he didn't
get that covid crap. Oh no, you had to get some other crap. Have been seeing commercial's
on the TV about that Gravis. Hope your treatments help you get it under control some what.
I'm pulling for you and I'm sure everyone here is too. Don't get caught using your middle
finger as an eye patch. ;D
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Jim, forum is not the same without your wit and wisdom. Praying your treatments continue to give you relief and you get back to normal...even if it's a new normal.
cheers,
Roger
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Hello Jim...I am really sorry to hear about your sight..Will be praying for you...Take care....
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Happy you are back Jim - and all the best for healing
Your posts are always from interest for all of us!
regards, Arnold
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Best wishes for you Jim.
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Jim, I visited your YouTube channel just 2 days ago and was becoming alarmed as there has not been a new video uploaded for approx 7 months!
We are happy and thrilled you remain "above grass" and will send up a little prayer for healing.
Your posts where frequently informative and entertaining....you have been missed!
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Great to hear from you. So sorry to hear of your condition. Looking forward to seeing you on the other side of it a d in monthly maintenance soon.
We all miss you on the Forum.
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Hi Jim,
Thank you for the update. Even if time consuming, it is good to know your treatments will have a positive effect.
I have missed seeing you here and was getting ready to make a phone call after we complete our move in a few more days. Wishing you the best and most comfortable recovery possible.
You are in our prayers.
Gil & Simone
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Sorry to hear about your eyesight problem Jim but glad you're getting treatment that's working and giving you some relief.
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Thats a buggar Jim
I sort of know what you are going through .
Many years ago I burnt both eyes with battery acid
I had one eye covered for a few weeks
This made driving the car and tractor interesting .
Hope you continue to improve .
Cheers
Dennis
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Here's hoping you get things sorted as soon as possible old friend.
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We miss you here too Jim! Get better!!
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Good to hear from you Jim , I'm very sorry to hear about your eyesight problem , that's no fun and nothing to mess with , Ang & I hope (& pray) that you get it easily under control.
God Bless.
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G'day all,
Been absent for ages, got diagnosed with some bloody immune disease (incurable but can be managed) called Ocular Myasthenia Gravis that has caused me to have double vision.
If I wear a patch over one eye (which I have to so I don't become nauseous) and keep changing it from eye to eye during the day its sorta' ok (but not really its pretty shit to be honest).
I've had two days of treatment as an outpatient in hospital last week (OMG it was a Covid war zone but I was lucky not to pick it up) where they've given me IV/IG transfusions at $6,000 a day (glad I'm not paying) and the neurologist that I'm seeing plus the other drugs I'm on to treat it says that my eyesight should start improving on its way back to normal but nothing in neurology is a quick fix.
The last couple of days I've had a couple of hours of normal vision which has been really positive for Jenny and I. Haven't steamed an engine for ages, one eye isn't much fun judging distances and things.
Anyway, just wanted to update my steam friends. Hope that all is well with everyone and really miss steaming and you blokes and so looking forward to getting on the other side of this. Its incurable (but not life threatening) and the treatment is to go to hospital as a day patient and get hooked up for an IV/IG transfusion once a month.
Catch up with you all soon