Author Topic: very rare autoimmune issue in friend--need prayers  (Read 8182 times)

irish

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very rare autoimmune issue in friend--need prayers
« on: July 02, 2008, 05:24:42 PM »
I just found out that a relative of a relative is in the hospital. This fellow is about 38 years old and has been ill since 2002 or so. He has been through the mill and has doctored constantly. He had the surgery for the hiatal hernia as he had such bad damage to his esophagus from GERD.He will lose up to 60 pounds in just a couple of months and then gain it back only to lose it again down the road. He has been through so much and finally it was decided that he had MS.

One of his problems is very rare and was just diagnosed yesterday. He has had spinal cord leaks with accompanying spinal headaches many times. He will end up in the hospital on bedrest and has had a couple if blood patches to close these leaks. Doesn't always work though.

He is in the medical field so he knows where to go, who to see, how to get information etc but it doesn't do him any good cause doctors just do the same old, same old.........you know the drill.

He had a special kind of MRI and the doc told them it was normal. Well, the wife insisted that she see the films and the doc then read the MRI report. Turns out there are 30 diverticuli on his spinal cord and when these get big enough they burst and leak causing the headache. His wife is a nurse and has done a lot of googling and knew about this condition and where to go for help.

The doc they saw yesterday said that he didn't know what to do for it(after he had already said the MRI was normal) and who to send him too. This is a plenty sorry excuse for a doc when won't even find a referral. Docs have so much access to internet infor that he could have found some doc to refer him to. Anyway, the wife says, I know who to refer him to and here is his name and phone number. Meanwhile the surgeon they need him referred to is on vacation until the 14 th of the month. This surgeon in at Mayo Clinic.

I am requesting prayer for intervention in this fellows medical status so that he can get on with his life. They told him that these diverticuli are caused by an autoimmune connective tissue disease so he must have something else besides MS. I am so concerned for this young couple and their 2 kids. They have not had much of a life.

It is so amazing because he has managed to finish a doctorate program in his field so he can teach college as he knew that he would probably lose the ability to walk in years to come. He has been so ill over the years and he went to college plus working.  Hospital staff would find him lying on the floor in his office from weakness/pain, etc. He is such a great guy who loves his wife and family and wants only the best for them. My heart just breaks over the suffering that he and his family has gone through. It just never ends for some people. Irish ;D
« Last Edit: July 02, 2008, 11:04:04 PM by irish »

Cheryl

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Re: very rare autoimmune issue in friend--need prayers
« Reply #1 on: July 02, 2008, 06:04:48 PM »
Irish,
  I am praying for your friend.   It sounds as if a lot of people count on him already, and we can imagine how many lives he will touch after he finishes his doctorate.
Cheryl
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Sjenny

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Re: very rare autoimmune issue in friend--need prayers
« Reply #2 on: July 02, 2008, 06:14:04 PM »
Irish:

Count my prayers in too!  My heart goes out to this young man, those spinal headaches must be terrible to endure and he still soldiers on. 

Please God be with this man and his family.

Sue

lynnmarie219

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Re: very rare autoimmune issue in friend--need prayers
« Reply #3 on: July 02, 2008, 07:27:34 PM »
Irish,


I'm also sending my prayers and positive thoughts out for him and his young family! He deserves some answers and I hope he gets the treatment he needs very soon!

kimbo

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Re: very rare autoimmune issue in friend--need prayers
« Reply #4 on: July 02, 2008, 08:34:06 PM »
Irish,
God bless you for your great concern. I pray direction in finding the appropriate DR with knowledge and interest for this young man. I pray for healing power and peace in this difficult trial for he and his sweet family.
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Pooh

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Re: very rare autoimmune issue in friend--need prayers
« Reply #5 on: July 02, 2008, 09:44:31 PM »
Irish,
Please send me his name and I will add it to the prayer list at church.  I'm sure there will be a lot of prayers added to mine. 

Hugs and God Bless,
Pooh

downrabbithole

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Re: very rare autoimmune issue in friend--need prayers
« Reply #6 on: July 02, 2008, 10:18:42 PM »
This is terrible. I will be thinking of and praying for him.

Skylar

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Re: very rare autoimmune issue in friend--need prayers
« Reply #7 on: July 03, 2008, 09:35:22 AM »
Oh Irish, this is so sad, he and his family have been through so much and will continue. He is lucky to have his wife act as his advocate in demanding to see the MRI. I've had CSF leaks and I know those headaches are the absolute worst and the blood patches don't always work. I'm sending healing vibes and hope he finds some help with this new Dr.

Skylar

fatburningmachine

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Re: very rare autoimmune issue in friend--need prayers
« Reply #8 on: July 03, 2008, 12:29:41 PM »
I will add my prayers too. He seems to have true grit and is a real fighter. I am confident that he will get the help he needs so that he can use his doctorate to help many others. Thank you for sharing this with all of us. We truly do care.

salsen

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Re: very rare autoimmune issue in friend--need prayers
« Reply #9 on: July 03, 2008, 09:54:25 PM »
Irish I will be keeping your friend and his family in my prayers. He is surely a testament to the human spirit fighting to overcome adversity.  Thank goodness both he and his wife are in the medical field so that they can help guide the doctors along.  What a mess it would be without their own intervention.  Please keep us posted on his condition. 

susanep

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Re: very rare autoimmune issue in friend--need prayers
« Reply #10 on: July 04, 2008, 01:54:29 AM »
Irish, I have already prayed for your friend and his family. I am a big believer in prayer. It is so powerful.

susanep
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genko_b

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Re: very rare autoimmune issue in friend--need prayers
« Reply #11 on: July 04, 2008, 11:56:03 AM »
Count me in too, Irish. So sorry to hear of his suffering.

Genko

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Re: very rare autoimmune issue in friend--need prayers
« Reply #12 on: July 04, 2008, 12:53:02 PM »
Irish

I am praying for this young family too.

Kathyx

irish

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Re: very rare autoimmune issue in friend--need prayers
« Reply #13 on: July 04, 2008, 08:53:04 PM »
An update on this fellow. He is home from the hospital and on a mattress in the living room for 3 weeks until the doc is home from vacation. However, he says he will not stay on the floor for that long. He wants some action and I don't blame him. Meanwhile his wife is trying to find someway to get IV's for him every other day as he needs lots of hydration to keep up with the body's need to manufacture spinal fluid.

Also, their insurance will not cover medical care in Minnesota and Mayos want cash up front before they will treat him. They went through this with Mayos the last time. He would be better off with no insurance!!!! Also, I got to thinking that just maybe they could appeal it with their insurance company as it is a rare condition and can't find treatment just any old place. Worth a try and more work for the wife.

It is difficult to transfer him to Mayo's and we drive an 11 year old Yukon that works very well to haul sick people around in the back. Did it with hubby many times. We can put a mattress back there etc. Told them we would be willing to drive the 4 hours to pick him up and bring him back to Mayos.

To say that I am worried sick is an understatement. This is another one of our medical systems ability to screw things up which was encouraged by medical communities inability to listen to what a patient says. Prayers are greatly needed and greatly appreciated. Irish ;D

Katybarstool

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Re: very rare autoimmune issue in friend--need prayers
« Reply #14 on: July 05, 2008, 08:03:27 AM »
Irish

It's unbelievable that people in need are left to their own devices when insurances comapanies are difficult. I pray that he gets the treatment he needs soon.

Kathyx