moodyblue
Drama Llama

Posts: 6,381
Location: Western Illinois
Site Supporter
Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Jan 2, 2025 1:42:29 GMT
Not knowing is the worst. There is so much to worry about when you have no definitive answers or plan.
I hope he gets a diagnosis quickly and can move forward with whatever treatment he needs.
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Post by supersoda on Jan 2, 2025 2:20:49 GMT
I'm so sorry. I hope they can get it sorted out soon and get him on the path to healing.
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uksue
Pearl Clutcher
Posts: 2,597
Location: London
Jun 25, 2014 22:33:20 GMT
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Post by uksue on Jan 2, 2025 2:28:51 GMT
Thank you so much for all your support. I have felt frantic because I literally have noone to discuss this with that I wouldn't be causing them anxiety as well.
He literally was given no advice re how to look after himself whilst waiting for results, but my daughter is going to contact her specialist MS nurse tomorrow to see whether she can get any info or make any suggestions.
It's like going back to 1995 when his dad became so very ill. He was in dreadful pain- was literally pacing day and night to cope. He lost a pile of weight, most of his hair and our GP at the time was useless. I did my own research - no internet for me then- and came across a leaflet on lupus. coincidentally the support group was formed and is based locally. They gave me a load of leaflets to take to the GP as they agreed it sounded likely. There's no single test and getting the GP to read the info and get the tests run was a battle. He kept giving him pain killers- he actually got formally diagnosed because he started vomiting blood whilst I was at work one day and my mum was looking after him. I got him to the hospital, they whacked some pethidine into him ( the look of joy on his face - pajnfree for the first time in 2 months!) and he subsequently was diagnosed and had a great specialist. He's done badly because he wouldn't take the meds - not even the blood thinners he required, ended up having a massive stroke and has been very disabled for 6 years now.
I can't bear the thought of Matt being messed around like that. I had to fight tooth and nail to get my daughter scanned when she suddenly lost her sight during our first COVID lockdown and I'm willing to do the same for him- if he'll let me!
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Post by crazy4scraps on Jan 2, 2025 2:38:25 GMT
How scary for all of you! Sending hugs and positive thoughts your family’s way as he works through this and I hope he gets some answers soon. The not knowing has to be the worst.
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Post by flanz on Jan 2, 2025 2:59:09 GMT
I'm so very sorry, Sue. I'm sending you lots of love and good wishes. I pray that it is something reversible. A couple of peas have posted encouraging alternatives above. ((( hugs )))
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Post by brynn on Jan 2, 2025 3:01:20 GMT
I've actually nursed a young man with GBS in intensive care years ago, but he presented as a medical emergency as his breathing was affected. I'd forgotten about that 😩 there are so many awful neuro diseases 😢 I had Guillain Barre Syndrome 23 years ago. A nurse in the rehab program was amazed how fast the immune globulin helped in my recovery. And more medical advances have likely been made since then.
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janeinbama
Pearl Clutcher
Posts: 3,257
Location: Alabama
Jan 29, 2015 16:24:49 GMT
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Post by janeinbama on Jan 2, 2025 3:06:33 GMT
Will be praying for positive results and for you Sue to get a break ❤️
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Post by malibou on Jan 2, 2025 3:24:56 GMT
I’m so sorry this has been added to your plate. Gentle hugs.
I too think it could be GBS.
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Post by worrywart on Jan 2, 2025 4:29:15 GMT
I am so sorry you and ds are dealing with all of this uncertainty. I hope that they doctors can figure it out quickly and give him a treatment plan. Sending healing thoughts for his quick recovery! (((hugs)))
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Marina
Pearl Clutcher
Posts: 2,543
Aug 12, 2014 23:32:21 GMT
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Post by Marina on Jan 2, 2025 8:21:00 GMT
I'm so sorry this is happening to your son. I pray they get answers soon. Hugs to you as you deal with all of this.
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Post by putabuttononit on Jan 2, 2025 9:20:46 GMT
I’m so sorry, that’s so hard to handle especially before you get any answers. I hope it’s something simple and can be resolved quickly. Please keep us updated ❤️🙏🏼
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Post by jeremysgirl on Jan 2, 2025 11:18:46 GMT
I am so sorry to hear this. I can hear how worried you are. ❤️ I don't have any advice to offer but I do have prayers. And all of us are here to listen. Big hugs. Please update us when you can.
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Post by lesserknownpea on Jan 2, 2025 12:30:48 GMT
My niece had GBS a few years ago. She was in her early 30’s. She’s since made a full recovery. I know this is scary, I hope your son does not have anything with long term implications.
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Post by heckofagal on Jan 2, 2025 14:38:16 GMT
I've actually nursed a young man with GBS in intensive care years ago, but he presented as a medical emergency as his breathing was affected. I'd forgotten about that 😩 there are so many awful neuro diseases 😢 I have a friend who had GBS a few years back and has since made a full recovery. If that is what he had I feel it would have progressed by now. Unless there are types that are less serious. Whatever is going on with him, I hope you find answers soon and that it is not as serious as what you fear. Hugs mama! There is nothing worse than watching your child suffer, and it sounds like you already have a full plate.
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artbabe
Pearl Clutcher
Posts: 3,844
Jun 26, 2014 1:59:10 GMT
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Post by artbabe on Jan 2, 2025 15:51:28 GMT
Thinking of you and your son.
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msladibug
Pearl Clutcher
Posts: 2,770
Jul 10, 2014 2:31:46 GMT
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Post by msladibug on Jan 2, 2025 16:01:21 GMT
i'm sorry to hear of the health issues your family is dealing with. I'm sending hugs your way.
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Post by librarylady on Jan 2, 2025 16:40:19 GMT
Prayers for a diagnosis and prompt healing.
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Post by scrapmaven on Jan 2, 2025 21:56:24 GMT
I feel for your mama heart. That they are content just waiting is cruel. I'll think good thoughts that it's nothing bad, but if it is he'll have you by his side.
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northrigg02
One Post Wonder
Posts: 1
Oct 13, 2023 12:08:37 GMT
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Post by northrigg02 on Jan 2, 2025 23:35:18 GMT
Sent you a message
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Deleted
Posts: 0
Aug 18, 2025 19:53:07 GMT
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Post by Deleted on Jan 2, 2025 23:59:14 GMT
I’m so very sorry to read this. I hope you and he get some very positive news quickly, perhaps a pinched nerve or something simple related to working out. I’m praying for that. My heart is with you.
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Post by scraplette on Jan 3, 2025 3:54:25 GMT
I hope there are answers and a plan soon. My reflex was to say a prayer, the feeling is enhanced by being the mother to 20-something sons. Please interpret this as good vibes of prayer isn’t your thing!
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Post by shamrock on Jan 3, 2025 15:19:47 GMT
I’m sorry he is having to go through this. I hope he has answers and a plan for improvement soon.
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kate
Drama Llama

Posts: 5,667
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Jan 4, 2025 2:59:04 GMT
I'm so sorry you're both going through this. Praying for a fixable diagnosis. Big hugs, mama.
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peabay
Prolific Pea
 
Posts: 9,975
Jun 25, 2014 19:50:41 GMT
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Post by peabay on Jan 4, 2025 13:40:18 GMT
Sending my best. Hoping and praying it’s something he can recover quickly from.
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hannahruth
Pearl Clutcher
Posts: 2,849
Location: Adelaide, Australia
Aug 29, 2014 18:57:20 GMT
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Post by hannahruth on Jan 4, 2025 15:57:18 GMT
Hoping for a quick diagnosis so that treatment came begin quickly. Hugs to you and your family.
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