I was in a dark place, thankfully I'm still here.

Posted by change25 @change25, Jun 27 11:42am

It all became too much, after a long battle trying to get answers and not getting anywhere my mind went to a place it had not been before. I did feel thirsty at the time but I do think there was a conscious effort to harm myself. I consumed 4 and a half litres of water in 40 minutes. This was in the morning and by 5pm on the night I had a seizure and was rushed to hospital in an ambulance. I spent a week in intensive care. I don't recall much of it due to sedation. I suffered from cerebral edema and high white blood count. Thankfully all of which were corrected by the medical staff. It's taken a while to get back to health. I'm sorry for the delayed update to anyone who was concerned. I did receive some mental health support along with medication. The best of which I now have a genetic consultation booked for August. Thank you for your support as always, it's much appreciated.

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very very sorry about the difficulties.

Wishing you the very best through all your challenges.

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change25, How's your week been? I am praying for you and that you are improving. Blessings....

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@change25

I'm feeling better now. The maxillofacial surgeon who I was initially disappointed with has got back in touch after reviewing my CT scans. He's identified changes in bone structure and density so is sending me for further tests. Finally some acknowledgement

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@change25 yes! Awesome news !! Please please keep communicating with doctors and if they don't seem to listen have them send you somewhere else! Or go to the er and say this just happened! Prayers always to you ! And hugs !!🤗🧡🤎

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@becsbuddy

@change25 Edward, haven't heard from you in a week. How are you doing? We’ve had very high temps, something unknown in Colorado. About 101 degrees, today! Hope all is well. Do you think these new doctor appointments will give you some answers and a new look on life?

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Unfortunately, the consultation with the maxillofacial specialist was disappointing. The scan showed no bone abnormalities or issues with function which is good. However, he couldn't explain the changes and just said it was atrophy which was frustrating. I'm not sure whether to cancel the geneticist and instead book an appointment with a cosmetic surgeon. Decisions decisions... what do you think is best?

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@change25

Unfortunately, the consultation with the maxillofacial specialist was disappointing. The scan showed no bone abnormalities or issues with function which is good. However, he couldn't explain the changes and just said it was atrophy which was frustrating. I'm not sure whether to cancel the geneticist and instead book an appointment with a cosmetic surgeon. Decisions decisions... what do you think is best?

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change25, I am so sorry. Personally, I would go see both the geneticist & plastic surgeon if possible if that would give you more encouragement. Make sure the plastic surgeon is board certified and look at the reviews on him/her.

Praying for you to get results....Praying for you to be encouraged....Praying for God to lift you up. Blessings & Prayers...

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@covidstinks2023

change25, I am so sorry. Personally, I would go see both the geneticist & plastic surgeon if possible if that would give you more encouragement. Make sure the plastic surgeon is board certified and look at the reviews on him/her.

Praying for you to get results....Praying for you to be encouraged....Praying for God to lift you up. Blessings & Prayers...

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Unfortunately, due to cost restraints I can only see one or the other. The consultation alone for the geneticist is £350 and then the cheapest genetic panel is £1300 plus a follow up consultation which is £250.

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@change25

Unfortunately, due to cost restraints I can only see one or the other. The consultation alone for the geneticist is £350 and then the cheapest genetic panel is £1300 plus a follow up consultation which is £250.

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I'm so sorry. I pray for the right decision to the one that will help you most. Don't give up. Blessings & Prayers....

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I've decided to just go forward with the genetic appointment considering it is only three weeks away. I was going to push for a genetic panel regardless of what the geneticist thought. If he doesn't think there's any clinical significance I won't go forward with it now though. Thank you for your advice, extremely helpful as always. I'll update on the 23rd August after my appointment.

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@change25

Unfortunately, the consultation with the maxillofacial specialist was disappointing. The scan showed no bone abnormalities or issues with function which is good. However, he couldn't explain the changes and just said it was atrophy which was frustrating. I'm not sure whether to cancel the geneticist and instead book an appointment with a cosmetic surgeon. Decisions decisions... what do you think is best?

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@change25 Don’t rush to the cosmetic surgeon. You really want to find out has caused all the changes before you try to fix them. you don’t want to pay big bucks and then find out that nothing changed. Go and see the geneticist.
Have you seen a dermatologist?
I feel that we’re not working together at this time, but we’ll sure keep trying!

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@becsbuddy

@change25 Don’t rush to the cosmetic surgeon. You really want to find out has caused all the changes before you try to fix them. you don’t want to pay big bucks and then find out that nothing changed. Go and see the geneticist.
Have you seen a dermatologist?
I feel that we’re not working together at this time, but we’ll sure keep trying!

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I agree, it doesn't make sense to see a plastic surgeon at this time. I do have total faith in this geneticist as opposed to other specialists I've seen thus far. Whatever he says I'll take on board and I won't push for anything if he doesn't think there are grounds to cover. My appointment is on the 23rd so I'll update once I'm back.

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