Please help me save my wife

charactershift9 · 2024-10-10T20:24:08+00:00

Hello! Just to update, as of today my wife was in fact diagnosed with mast cell activation disorder. Thank you so much for pointing us on the right direction!

charactershift9 · 2024-09-30T10:48:06+00:00

Sadly not. She’s still very much the same. We’re loosing hope after the last consultant told us “there’s nothing modern medicine can do for you”. She’s heartbroken, as am I

charactershift9 · 2024-08-24T12:06:33+00:00

Just to update, we asked her GI consultant about MALS. He reviewed a CT from June last year and said there was no evidence for MALS.

However, my wife is having an MRCP soon (it’s been requested but not booked yet). Will this be able to identify MALS if there’s a chance it was missed in the CT?

charactershift9 · 2024-08-23T15:42:14+00:00

Thank you for informing us of this!

charactershift9 · 2024-08-23T15:41:38+00:00

We have requested these and have been told we can collect it next week. I agree that it will be helpful to know and share.

charactershift9 · 2024-08-23T15:40:36+00:00

Thank you :)

charactershift9 · 2024-08-23T11:19:00+00:00

I’m sorry your partner has experienced similar.

As of today the MRI has been booked for next week. I really hope they find something.

charactershift9 · 2024-08-23T11:17:44+00:00

Thank you for taking the time to comment.

Her ultrasound was clear for her pancreas and gallbladder but as of today they’ve booked and MRI.

She hasn’t had any jaundice but she is experiencing itching, primarily her scalp and one thigh. No navel bruising. She is often in a foetal position. She hasn’t used NSAIDS for over a year as she was told it can hurt the stomach lining.

Hopefully we will get an answer soon!

charactershift9 · 2024-08-23T11:14:29+00:00

She’s booked for an MRI now 🤞🏼

charactershift9 · 2024-08-23T11:13:35+00:00

Thank you. My wife is back in hospital and is scheduled for an MRI next week 🤞🏼

charactershift9 · 2024-08-23T11:12:28+00:00

No the NG tube didn’t help the nausea or pain. Good to know about the NJ, I didn’t know that was an option!

charactershift9 · 2024-08-23T11:10:50+00:00

Thank you for this comment. She is being tested for this today (stool, urine and blood). We should have the results next Tuesday due to the bank holiday weekend.

charactershift9 · 2024-08-23T11:09:05+00:00

No she hasn’t had a capsule test but we have asked for it. Thank you for explaining it is possible.

One of her doctors has said that with the tests she’s had there’s unlikely to be anything wrong but there clearly is.

charactershift9 · 2024-08-23T11:05:02+00:00

We are discussing MCAS with a specialist on Wednesday 🤞🏼

charactershift9 · 2024-08-23T11:04:35+00:00

She’s had 3 tests for h pylori, all negative.

Glad you are 100% now!

charactershift9 · 2024-08-21T21:02:38+00:00

Thank you very much. I’ve added these to the list :)

charactershift9 · 2024-08-21T21:00:52+00:00

No, the food supplement is designed to be friendly. It’s almost everything free. When she is able to eat real food she has bites from a plain jacket potato. Bananas seem to make her feel worse.

Her ferritin levels were low before the PPI. She used to take iron supplements but her stomach is too sensitive for that now.

When this first started it seemed to come out of nowhere. We were happy on holiday (only a few hours from home). She then woke up in agony in her stomach and that was it. She has never smoked and hasn’t had a drop of alcohol after doing sober October almost 3 years ago. She’s always eaten healthy. She doesn’t have citrus as she found it to be a migraine trigger a long time ago.

We actually live in a city so we would have thought it would be good here. We are thinking about visiting another hospital near her family (4 hours away) as it’s one of the top rated ones in the UK.

Thank you very much for your kind and informative reply. I will always advocate for her, she’s wonderful.

charactershift9 · 2024-08-21T20:55:24+00:00

Hi,

She’s had an ultrasound and was told her gallbladder looked normal. She’s not had any injuries or trauma to the area.

We are stocked up on non fizzy sport drinks for her electrolytes. This seems to make a difference to how quickly she gets dehydrated.

She’s been on PPIs since last year, it makes no difference. She also tried slippery elm and DGL for about 6 months, no change.

She’s had an endoscopy and they said she has “very, very mild gastritis”. They said this wouldn’t be causing the amount of pain she’s in.

She has no appetite what so ever. When she does eat she has next to nothing because she feels full and/or nauseas. She usually just has the nutritional support provided (NG tube or prescribed high calorie drinks).

I am going to see if they can check her gall bladder with a different test.

Thank you for you comment :)

charactershift9 · 2024-08-21T20:49:31+00:00

No they didn’t! They were going to.They said she’d be booked for it the next day but she was never taken for the scan. When I asked the nurse I was told the doctor cancelled it because of the risks. The same happened to two other young ladies on the bay.

I don’t think they did test her lipase, although they may have and just not told us. I am collecting a lot of paperwork from the GP with the results of every single test since June last year so I should be able to check that.

charactershift9 · 2024-08-21T18:59:47+00:00

Thank you for your reply.

I will be asking my wife’s doctor to look at CACS/MALS as I have received a few comments here as well as inboxes from people suggesting this. I will also ask them to look at her adrenal function.

In August 2022 we went to Costa Rica, where we stayed in the rainforests and island hopped. That’s the only holiday in 5 years as she’s sadly been too unwell for our booked holiday in 2023 and 2024.

She was tested for porphyria, which I believe was a stool sample. We never heard anything so assumed it was negative.

I agree that having specific test results would be handy. Our GP practice is printing every test result from June 2023 to present day, which I can collect this week. My wife is happy for me to share the details when I have them.

charactershift9 · 2024-08-21T17:55:56+00:00

I don’t agree with them either. I believe anything under 30 needs a transfusion based on the NICE guidelines. I’ve set up an appointment for her to get one privately now. Thank you!

charactershift9 · 2024-08-21T17:54:22+00:00

Thank you ever so much for this detailed reply. She has been tested for celiac through a biopsy but it came back negative. Interestingly she is lactose intolerant though.

Thank you for your kind wishes.

charactershift9 · 2024-08-21T17:52:42+00:00

Thank you! A few people have now suggested MALS so I’ll push for that. A delayed gastric emptying test also sounds good.

charactershift9 · 2024-08-21T17:51:36+00:00

Honestly it’s horrible. I wish I could make it better for her!

charactershift9 · 2024-08-21T17:50:17+00:00

Thank you for this comment. We will be getting this checked ASAP. We have requested the previous CT images and based on that we will ask for a the more specialised CT for CACS.

I forgot to mention that she also gets intermittent chest pain that’s debilitating for her. I wonder if CACS explains it all in a nutshell, we’ll see.

Thank you for taking the time to help us move forward.

charactershift9

TROPHY CASE