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Sjogrens Topics => Living With Sjogren's => Topic started by: irish on July 02, 2008, 05:24:42 PM

Title: very rare autoimmune issue in friend--need prayers
Post by: irish 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Cheryl 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Sjenny 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: lynnmarie219 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!
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: kimbo 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.
kim
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Pooh 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: downrabbithole on July 02, 2008, 10:18:42 PM
This is terrible. I will be thinking of and praying for him.
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Skylar 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: fatburningmachine 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.
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: salsen 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. 
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: susanep 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: genko_b on July 04, 2008, 11:56:03 AM
Count me in too, Irish. So sorry to hear of his suffering.

Genko
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 04, 2008, 12:53:02 PM
Irish

I am praying for this young family too.

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish 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
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool 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

Title: Re: very rare autoimmune issue in friend--need prayers
Post by: loulou on July 05, 2008, 12:01:20 PM
Hi Irish

I offer my prayers for your friends family its unbelievable that sick people have to fight so hard and push for should be done with no hesitation, it simply not fair.

I pray for a positive outcome for him.

TAke care
Loulou
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: YICKelly on July 05, 2008, 12:08:15 PM
Add my prayers too.  I am sorry I missed this post the last time I was here.  But. I will pray now for the family and for the ability to get the care he needs!!  You are wonderful to do all that driving!  Prayers for a safe trip for you also.  Please keep us updated.
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: LenV on July 05, 2008, 03:45:57 PM
Irish,
It just breaks my heart!  I get so fed up and disgusted with the medical field.  I know there are good medical  personnel.  I've had a few of them.  But it seems that the bad outweigh the good. 

He's in my prayer box.  God will know his name.

You be careful please.  We need you.

Billye
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 05, 2008, 09:29:59 PM
Another update that makes me feel better. My relative called the wife last evening and it turns out this fellow had a better day yesterday. His pain was down from excruciating to bearable. The wife got the little wading pool out for the girls and the neighbor kids came over so there was kids laughter and fun going on.

That evening the wife fixed up the back of their small SUV and managed to get him in it and they went and watched the fireworks. It made me feel so good to know that they could have such a good day after the past week. Monday the wife will start back in on the quest for IV therapy for him. She said if they put in a PIC line she could do it at home and it would be so much easier than trying to transport him.

I want to thank you all for your prayers as I feel they have been working in his life. I would appreciate it if you would continue as you see fit. They have a long row ahead of them. Thanks again. Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: fatburningmachine on July 11, 2008, 08:55:25 PM
The prayers will continue. I have been wondering while I was gone how it was going. Hopefully things will be uphill from now on.
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 13, 2008, 10:16:02 PM
An update on this fellow situation. My relatives left the beginning of the week to visit and get things in motion. It seems that the fellow ended up in the hospital again on July 5th and was in really bad shape with pain and lots of extra limb movements that were so bad the bed moved.

The wife was exhausted. My relatives said that the neurologist did not think that this patient needed to go to Mayos as "they won't do anything". Anyway, there was a lot of conversation and it ended up that my relatives helped get things in motion and he was transferred to Mayo's on Wed by ambulance. I guess he had his IV's pulled for some reason for the transfer. He had been medicated well when he left and it was about 2 1/2 hour trip. He ended up in a room at St. Mary's ER in Rochester waiting for workup and admit. However, he had to wait 3 hours with no IV and no pain med plus he was in a room with no TV, no call light, no nothing. Anyway, they finally got to him and he got admitted.

By that night he had improved. They have him on IV's and it was a blessing in disguise to have him to without pain meds and IV's as the docs got to see him in agony. He has had MRI with dye and nothing has showed up on that---I have always wondered if he had a for sure diagnosis on the MS. When his brain scan came back clean he quit taking his IM medication for the MS that he may not have.

The docs thought about sending him home until Wed when the head of the department comes back but he can't live without the IV's and he is not stable so he is to just wait and they will run some tests. Hopefully, they will find out why he is having these spinal cord leaks and get that problem addressed. Otherwise, it makes one wonder how much good it will do to patch the leaks. I guess they inject some glue into those leaks. Will be interesting. Prayer is certainly still needed as he is not out of the woods yet. At least he is comfortable. They drugged him up and he took a shower for the first time in a couple weeks. He said the shower was worth the pain.

I have to tell you this though. My relative is something else. She and hubby were there when the doc made rounds. I guess the neurologist was quite arrogant and know it all. My relative told him "one of us is going to leave here on a stretcher and it isn't going to be me". In other words, the doc was not going to win this round cause it was time for the patient to move on and get diagnosed. The doc wasn't too happy about being callenged.

They asked the doc what the plan was for the patient and he didn't have one and hadn't had one for the past 3 years. He admitted this. I guess I am just totally freaked out by some of the doctors responses to patients. I don't know if he thought this guy was making up the pain or what.

Will keep you posted on the surgery etc. Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 13, 2008, 11:55:15 PM
Irish

That sounds absolutely awful - th epoor man, and his family. My prayers aare definitely with him.

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: navydad on July 14, 2008, 08:56:03 AM
first rule of thumb for doctors is do no harm, seems they thrive on that now,,
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Scottietottie on July 14, 2008, 09:56:11 AM
Hi Irish

I'm so sorry this is happening. poor man. Keep us posted for for sure. I hope they change their attitude and sort out what's wrong.

Take care - Scottie
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: loulou on July 14, 2008, 11:11:40 AM
Hi irish


Its just incredible how this man has been treated, its bad enough that he is dealing with tremendous pain, but to have to deal with all the uncertainty of what is happening.

I continue to pray for him and for his family. I pray his health will improve and be relieved from pain.

TAke care
loulou
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Sjenny on July 14, 2008, 04:54:56 PM
Dear Irish:

My heart goes out to this young man and his family.  Prayers are continuing.

Sue
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 16, 2008, 07:19:06 PM
I have just received information on this fellow and it is not good news. My heart is aching for them. Now that this is getting so much more serious I will tell you that this is my middle son's BIL that is sick. Son lives next door to us in the country. Jerry's (the patient) folks just brought the 2 girls to my son's house an hour ago. They will be here for an unknown length of time. I will have them tomorrow and feed them along with my grandaughter. My BIL and SIL from Mesa are here living in their trailer in the front yard for 6 weeks. They will be good about helping with the girls also.

Jerry's specialist came back today and examined him etc. The word is that it is a basically inoperable situation. Mayo has never done a surgery this complex. They are afraid that he will get infection and have damage that will cause him to be in pain and need multiple fusions on his spine. The chances of this is 50-50. They have done this surgery at California at Mount Sinai but Carol and Jerry are trying to wrap their brain around this whole situation. It was devastating to them. Jerry says he can't live like this any longer. The question of going to California is how would they get him there as he can't sit up any longer than 20 minutes. What will they do for money if they go out there as Carol will not be able to get back to Wisconsin to work part time. What will they do with the girls for a long, long term thing.

Jerry has stated that he is willing to have surgery on just the lower part of his back in the lumbar area. Try it and see how it goes. This is where the worst leak is. Surgery in the lower area will be about 6-24 hours. The good news is that he has not had any brain damage nor is there any flattening of the brain which would be a very, very serious situation. I am thinking that with the flattening of the brain he could be prone to have a herniation of the brain through the larger "foramen" (hole in bony part of upper cervical spine base of brain) where the spinal cord enters the base of the brain. This is basically a fatal situation.

I would be so greatful if you folks could keep them in your prayers. This has thrown them for a loop and the rest of us feel that way also. Thank you so much. Irish
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 17, 2008, 05:50:22 AM
Irish

I am so sorry to hear of this poor man's situation. I will continue to pray for him. Remember to look after yourself, as well as the little ones.

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 22, 2008, 09:47:12 PM
Just an update on Jerry with his spinal leak which goes from his lower spine to his cervical spine.  Some areas are leaking more than others.

Our son took their 2 girls over to Rochester on Sat to spend time with their folks and the plan was for them to stay there with them. Last night at 10PM Jerry started having seizure like activity again and she had to get him into the wh/ch they have that folds out flat for him. She had the 2 girls with her and they had to go through a more narrow crosswalk with 4 lanes of traffic and up the long sidewalk to get him to the hospital.

He was admitted and had blood patch at the Mayo Clinic today and then sent back to the hospital. The blood patch has already failed. The head surgeon is back from vacation as of last week and he has refused to operate also. There is the possibility that they will attempt to fix the lower part of the cord only--just to do the part that is leaking the most. The wife Carol is just exhausted and at the end of her rope from the stress of all this. The youngest girl is worrier and will be hard to console.

These 2 girls and my grandaughter will be over here tomorrow while DIL works. This is getting to be an unbelieveably long haul and a decision has to be made whether to transfer him to cedars-Sinai or to attempt a fix here. Jerry is also at the end of his rope. I would appreciate more prayers as this seems to be an endless situation at this point. Thanks for all the prayers and well wishes you have sent their way. Hugs to all of you. Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 23, 2008, 05:47:03 AM
Irish,

I'm so sorry to hear this news. It seems there is no end of trouble for this poor man and his family.

They are firmly in my prayers - and you too.

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Sjenny on July 23, 2008, 08:09:56 AM
Oh Irish, I am so sorry! Of course, I will pray and add Jerry and his family to our church's prayer list.

Sue
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 29, 2008, 09:06:29 PM
Just an update on Jerry. This has indeed been a rollar coaster ride for this young family and I don't know if it is over yet. However, prayers have worked as he has totally avoided surgery. It is the most weird thing. The blood patch that they thought had failed now seems to have worked on the lower spine.

Jerry had an MRI at 6AM this past Monday at Mayos with his doc in attendance to direct them when, where and how to take the pictures. It turns out that a lot of the diverticuli have healed or something---they are not there!!!! The blood patch on the lower spine has worked and they are going to put a blood patch on the upper spine tomorrow.

Now, this is the good news at this point. The bad news is that he is still having the terrible headaches and he had to start his new job teaching at the University in 5 weeks. He is on strong pain meds and needs to  be of "sound mind" to be able to drive and teach. He and his wife are very thankful for the healing but at the same time frustration is present because the docs do not know what is causing the headaches nor do they know if he will leak again. Chances are he will because he has done so many times already. The docs also think that he may be leaking in places that are not showing up on MRI.

I guess I can only pray and hope that this will just totally resolve itself or if it happens again there will be more medical knowledge accumulated to help fix him for good. The wife says she and Jerry feel like the whole thing was a dream. The pain, all the terrible CNS symptoms, the fast trips in the car to the ER and to take kids to relatives, the worry about money, everything that has happened in the past month was like living a fast paced life in slow motion with so many twists and tangles.

I want you to know that I told Carol and Jerry that I had shared their story with you folks and asked for prayer and they were both very appreciative. It is great to be able to share these things with others and know that somehow, sometime, someone is thinking or praying for comfort/healing/peace/ whatever is needed. Please continue to think of them. Thank you again. Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 30, 2008, 12:02:34 AM
Irish

Wonderful, at last some good news for the family. Well, I guess this just confirms how powerful prayer can be.

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Sjenny on July 30, 2008, 07:31:13 AM
Irish:

What good news that the diverticuli have healed!  I asked for prayer for Jerry and his family in my church just this Sunday.  Now to pray that these headaches end!

Sue
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: loulou on July 30, 2008, 08:05:01 AM
Irish

 My thoughts and prayers continue to go out to Jerry and his family, i pray that he will only improve with time.

TAke care
loulou
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: mompain on July 30, 2008, 08:36:47 AM
My prayers are with them.  Please pass along our concern.  Sometimes just knowing others are there can go a long way in helping one feel better.  I know you have done this, but just wanted to let you know that I care.
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 30, 2008, 09:02:48 PM
This is my final post on this thread. Jerry had another blood patch this morning and his bad headache quit. He and the family have gone home. He says that his back feels like a pin cushion after all the spinal taps, blood patches etc.

Hopefully this will never happen again. Again, thank you so much for your concern, prayers/good thoughts regarding Jerry and his family. This has been a very stressful month for them. Hopefully, things will settle down now and life will go back to "normal" for him. Hugs to al!! Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 31, 2008, 12:32:31 PM
Irish

That's wonderful news. 

Kathyx
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: irish on July 31, 2008, 08:42:44 PM
Sorry folks, I lied!!!! My son emailed me tonight telling me that Jerry is running a temperature. I emailed back telling him to tell Jerry to get to the doc ASAP as meningitis can happen quickly when a person has had spinal taps and blood clots injected for the spinal leaks. Infection is just part of our daily stress with dealing with doctors and hospitals. Wish it weren't so. Would appreciate more prayers. Irish ;D
Title: Re: very rare autoimmune issue in friend--need prayers
Post by: Katybarstool on July 31, 2008, 11:33:18 PM
Poor Jerry.  My prayers are definitely with him.

Kathyx