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Post by malibou on Feb 3, 2021 19:37:15 GMT
Oh my, he is in my prayers that sounds awful. Stupid question, have they been taking samples of the rashes and testing/biopsy them? Have they checked for squamous cell carcinoma? Granted that isn’t normally a rash, and his doctor will look at you like you have 4 heads and are crazy, but I know it has caused a rash that sounds like you describe on at least 1 human. Hugs And many prayers. Oh man, my dad is battling squamous cell carcinoma right now, and he has had a couple of crusty, non itching, painful rashes. No one ever mentioned it looking like it was following or trailing anything though. He was diagnosed from a crusty patch by his ear.
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Post by hop2 on Feb 3, 2021 20:00:19 GMT
Oh my, he is in my prayers that sounds awful. Stupid question, have they been taking samples of the rashes and testing/biopsy them? Have they checked for squamous cell carcinoma? Granted that isn’t normally a rash, and his doctor will look at you like you have 4 heads and are crazy, but I know it has caused a rash that sounds like you describe on at least 1 human. Hugs And many prayers. Oh man, my dad is battling squamous cell carcinoma right now, and he has had a couple of crusty, non itching, painful rashes. No one ever mentioned it looking like it was following or trailing anything though. He was diagnosed from a crusty patch by his ear. It’s rare but it can travel in the lymph system. Therefore break out a rash anywhere along the lymph system, also rare. And some doctors will tell you your crazy when you say that but I know it happened at least once. I literally had a dermatologist tell me I had no idea what I was talking about. I’m like well, ask the specialist at Fox Chase in Philly that diagnosed my dad, I’m only going by what he said. It is a nasty crusty uncomfortable rash. I sure hope it’s not that though.
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Post by mnmloveli on Feb 3, 2021 20:07:54 GMT
Just awful for your DH. I hope the Mayo Clinic appointment will help find a diagnosis. Gentle (HUGS) to your hubby.
Keep on being the great supporter you are.
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,763
Jun 25, 2014 23:21:30 GMT
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Post by scrapngranny on Feb 3, 2021 20:18:40 GMT
Praying for help from Mayo and a definite answers soon. Hugs!
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 21:43:17 GMT
Sending healing thoughts and prayers for answers. Has he been tested for blastomycosis? I believe he has, it's a no.
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 21:44:51 GMT
Does he have an implant in his back for pain? Could it be just a metal allergy? Sending love. He has a ton of hardware now, so the rash could be from that as it started after the surgery. His other symptoms started 7 years ago and his surgery was memorial day weekend of '20
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purplebee
Drama Llama
Posts: 6,729
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Feb 3, 2021 21:45:15 GMT
Sending prayers and healing vibes, hope he can be seen at Mayo ASAP.
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 21:47:44 GMT
Oh my, he is in my prayers that sounds awful. Stupid question, have they been taking samples of the rashes and testing/biopsy them? Have they checked for squamous cell carcinoma? Granted that isn’t normally a rash, and his doctor will look at you like you have 4 heads and are crazy, but I know it has caused a rash that sounds like you describe on at least 1 human. Hugs And many prayers. They've done multiple scrapings and biopsies and it comes back as a big fat nothing.
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 22:04:22 GMT
So he just called and they have him scheduled to be there at 6am on the 23rd and they're estimating 7-10 days. I don't even really know what to do with that-- just book a return flight on day 11 and hope southwest can change it if he can come home early I suppose.
We don't really have an option for dog sitting locally, we have one that has been having seizures and needs around the clock care and can't be boarded and only one of the kids is local enough that he can stay here, but that gives him a 90 minute commute to work and back and still leaves me having to find someone to come over twice while he's gone to do meds. The one dog sitter that we can trust just had surgery and can't handle the big dogs.
We are exploring options but they said access for me will be hugely limited because of covid still and I would be mostly in the waiting rooms. I can work from the hotel room if I work it out but so far he thinks he would prefer to have me stay here and video conference in. I will absolutely fly in for whenever they decide on a diagnosis- we know it's not good, it's just going to be learning how bad it is and I don't want him to be alone for that in any way.
It's about a 12-hour drive, so it's not off the table to find a pet-friendly rental and pack the dog & pony show up and take the needy one with us while boarding the others. We are going to explore more options tonight and make pros/cons lists of each of our options.
He says he thinks it's a good idea for me to only come for part of the time, but I will be able to tell if he's trying to be brave/responsible/whatever or if he's really good and if it changes at any point I will adjust plans immediately.
Trying to remember to breathe.
Thank you again, having some place to let it out is so helpful right now.
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brandy327
Drama Llama
Posts: 6,353
Jun 26, 2014 16:09:34 GMT
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Post by brandy327 on Feb 3, 2021 22:12:33 GMT
So he just called and they have him scheduled to be there at 6am on the 23rd and they're estimating 7-10 days. I don't even really know what to do with that-- just book a return flight on day 11 and hope southwest can change it if he can come home early I suppose. We don't really have an option for dog sitting locally, we have one that has been having seizures and needs around the clock care and can't be boarded and only one of the kids is local enough that he can stay here, but that gives him a 90 minute commute to work and back and still leaves me having to find someone to come over twice while he's gone to do meds. The one dog sitter that we can trust just had surgery and can't handle the big dogs. We are exploring options but they said access for me will be hugely limited because of covid still and I would be mostly in the waiting rooms. I can work from the hotel room if I work it out but so far he thinks he would prefer to have me stay here and video conference in. I will absolutely fly in for whenever they decide on a diagnosis- we know it's not good, it's just going to be learning how bad it is and I don't want him to be alone for that in any way. It's about a 12-hour drive, so it's not off the table to find a pet-friendly rental and pack the dog & pony show up and take the needy one with us while boarding the others. We are going to explore more options tonight and make pros/cons lists of each of our options. He says he thinks it's a good idea for me to only come for part of the time, but I will be able to tell if he's trying to be brave/responsible/whatever or if he's really good and if it changes at any point I will adjust plans immediately. Trying to remember to breathe. Thank you again, having some place to let it out is so helpful right now. I'm so glad to hear he was able to get in!!! And I'm praying that you can figure out the dog situation. I wish I were closer, I'd totally take care of them. I have a guy with a bum leg and won't take him anywhere for boarding(he also has an anxiety problem). Thinking of you guys!!! ❤❤
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Post by elaine on Feb 3, 2021 22:32:38 GMT
So he just called and they have him scheduled to be there at 6am on the 23rd and they're estimating 7-10 days. I don't even really know what to do with that-- just book a return flight on day 11 and hope southwest can change it if he can come home early I suppose. We don't really have an option for dog sitting locally, we have one that has been having seizures and needs around the clock care and can't be boarded and only one of the kids is local enough that he can stay here, but that gives him a 90 minute commute to work and back and still leaves me having to find someone to come over twice while he's gone to do meds. The one dog sitter that we can trust just had surgery and can't handle the big dogs. We are exploring options but they said access for me will be hugely limited because of covid still and I would be mostly in the waiting rooms. I can work from the hotel room if I work it out but so far he thinks he would prefer to have me stay here and video conference in. I will absolutely fly in for whenever they decide on a diagnosis- we know it's not good, it's just going to be learning how bad it is and I don't want him to be alone for that in any way. It's about a 12-hour drive, so it's not off the table to find a pet-friendly rental and pack the dog & pony show up and take the needy one with us while boarding the others. We are going to explore more options tonight and make pros/cons lists of each of our options. He says he thinks it's a good idea for me to only come for part of the time, but I will be able to tell if he's trying to be brave/responsible/whatever or if he's really good and if it changes at any point I will adjust plans immediately. Trying to remember to breathe. Thank you again, having some place to let it out is so helpful right now. The potential for you to not be able to come in to the hospital/medical complex at all should be fully explored. My 85 yo mom just had surgery 3 weeks ago, and she needs help cognitively and physically getting around, but they wouldn’t let me in the hospital. They would not budge and I wouldn’t leave until they got a staff person to escort her to where she needed to go. I had to drop her off and then wait in my car for 8 hours until I got the call from post-op. And then with my surgery 1.5 weeks ago, at a different hospital from mom’s, my husband had to drop me off and then wait for the call from my surgeon and then another call from from post-op. He then drove to the main entrance to pick me up. So, depending on their set-up and their rules, you may not even be allowed into waiting rooms. ((hugs))
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Post by swtpeasmom on Feb 3, 2021 22:34:27 GMT
I am so very sorry for all you and your DH have been through and continue to go through (((HUGS))) Will keep him in my thoughts and prayers!!!
I hope you guys get some good news once he has his Mayo visit.
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 22:43:06 GMT
So he just called and they have him scheduled to be there at 6am on the 23rd and they're estimating 7-10 days. I don't even really know what to do with that-- just book a return flight on day 11 and hope southwest can change it if he can come home early I suppose. We don't really have an option for dog sitting locally, we have one that has been having seizures and needs around the clock care and can't be boarded and only one of the kids is local enough that he can stay here, but that gives him a 90 minute commute to work and back and still leaves me having to find someone to come over twice while he's gone to do meds. The one dog sitter that we can trust just had surgery and can't handle the big dogs. We are exploring options but they said access for me will be hugely limited because of covid still and I would be mostly in the waiting rooms. I can work from the hotel room if I work it out but so far he thinks he would prefer to have me stay here and video conference in. I will absolutely fly in for whenever they decide on a diagnosis- we know it's not good, it's just going to be learning how bad it is and I don't want him to be alone for that in any way. It's about a 12-hour drive, so it's not off the table to find a pet-friendly rental and pack the dog & pony show up and take the needy one with us while boarding the others. We are going to explore more options tonight and make pros/cons lists of each of our options. He says he thinks it's a good idea for me to only come for part of the time, but I will be able to tell if he's trying to be brave/responsible/whatever or if he's really good and if it changes at any point I will adjust plans immediately. Trying to remember to breathe. Thank you again, having some place to let it out is so helpful right now. The potential for you to not be able to come in to the hospital/medical complex at all should be fully explored. My 85 yo mom just had surgery 3 weeks ago, and she needs help cognitively and physically getting around, but they wouldn’t let me in the hospital. They would not budge and I wouldn’t leave until they got a staff person to escort her to where she needed to go. I had to drop her off and then wait in my car for 8 hours until I got the call from post-op. And then with my surgery 1.5 weeks ago, at a different hospital from mom’s, my husband had to drop me off and then wait for the call from my surgeon and then another call from from post-op. He then drove to the main entrance to pick me up. So, depending on their set-up and their rules, you may not even be allowed into waiting rooms. ((hugs)) This is the only reason that we're considering my staying in Ohio honestly. I would stay in the hotel room instead of the waiting rooms instead of minimize exposure and judging by the amount of time I've spent in parking lots and sitting on curbs this year I feel like I can be more useful at home on a stable wifi connection. Usually when one of us is traveling we jump on a video chat from the time we get back to the room/home from work until morning so that we keep mostly the same communication schedule and we can still sleep together (I have to admit, I appreciate being able to turn the volume down on his snoring. ) That was very much how it was when he had his surgery in the spring-- I put him out at the front door and then was able to go see him post op for an hour (But the nurses all knew me from a friend of a friend so they let me hide out until shift change). I won't in any way push for more access and put the staff in danger and honestly both of us being exposed on flights and in the airport bothers me a lot. part of me just thinks I need to hunker down and quarantine here so that I can be 100% for whatever happens when he comes home.
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mich5481
Pearl Clutcher
Posts: 2,554
Oct 2, 2017 23:20:46 GMT
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Post by mich5481 on Feb 3, 2021 23:04:46 GMT
So he just called and they have him scheduled to be there at 6am on the 23rd and they're estimating 7-10 days. I don't even really know what to do with that-- just book a return flight on day 11 and hope southwest can change it if he can come home early I suppose. We don't really have an option for dog sitting locally, we have one that has been having seizures and needs around the clock care and can't be boarded and only one of the kids is local enough that he can stay here, but that gives him a 90 minute commute to work and back and still leaves me having to find someone to come over twice while he's gone to do meds. The one dog sitter that we can trust just had surgery and can't handle the big dogs. We are exploring options but they said access for me will be hugely limited because of covid still and I would be mostly in the waiting rooms. I can work from the hotel room if I work it out but so far he thinks he would prefer to have me stay here and video conference in. I will absolutely fly in for whenever they decide on a diagnosis- we know it's not good, it's just going to be learning how bad it is and I don't want him to be alone for that in any way. It's about a 12-hour drive, so it's not off the table to find a pet-friendly rental and pack the dog & pony show up and take the needy one with us while boarding the others. We are going to explore more options tonight and make pros/cons lists of each of our options. He says he thinks it's a good idea for me to only come for part of the time, but I will be able to tell if he's trying to be brave/responsible/whatever or if he's really good and if it changes at any point I will adjust plans immediately. Trying to remember to breathe. Thank you again, having some place to let it out is so helpful right now. I'd drive there and board the dogs. Aspen Suites has a Mayo rate and they allow dogs (not sure if they have a size limit). Bear Creek Kennels can take the other dogs. Aspen Suites is about a mile from the Gonda building, but they usually have a patient shuttle. Not sure if any of the other hotels that offer a Mayo discount are pet friendly. The additional benefit of driving is you don't have to worry about a return flight if you need to stay longer.
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smcast
Drama Llama
Posts: 5,306
Location: MN
Mar 18, 2016 14:06:38 GMT
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Post by smcast on Feb 3, 2021 23:04:55 GMT
Our hospital system that I work for is allowing one visitor now. They may change it by the time your dh has his appointment so you can be present. Lots of logistics to figure out. Awesome on the appointment!
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Post by crimsoncat05 on Feb 3, 2021 23:08:37 GMT
I hope you get it worked out for your dogs... I'm just SO GLAD to hear that they gave him an appointment and hopefully it will give you some answers!!! (((((HUGS)))))
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 23:59:18 GMT
his hand today.
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 3, 2021 23:59:37 GMT
the other one
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 4, 2021 0:00:59 GMT
and underarm (the rest are too nasty for the internet and make me woozy.) I messaged the dr pimple popper but havent heard of the others, i will look them up though.
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Post by LavenderLayoutLady on Feb 4, 2021 1:27:00 GMT
I'm so sorry this is still so troubling for him & you both. I'm glad he has an appointment at the Mayo Clinic. I've gone back and reread most of the thread, specifically your posts on it. Although I obviously don't have a diagnosis for him, all the symptoms seem to point to an adult-onset autoimmune disease or disorder. He has lived with symptoms for years, manifesting in different ways. Swelling, joint pain, bone pain, elevated white blood cells, trouble breathing, rashes, eyesight loss, affected memory. There are many rare disorders that are overlooked due to rarity, and doctors being unfamiliar with them. At this point, I would google "Rare illnesses that manifest as rashes," and go from there. After reading, maybe finding some that match his symptoms, I'd make a list to use as a starting point, and ask the docs to test for rare autoimmune diseases. Just one disease that popped up when I googled is Erdheim-Chester
And in no way am I saying this is what he has, just showing that there's a lot out there, and the start to his answers might be found. Good luck. I'll keep you both in my thoughts.
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Post by SallyPA on Feb 4, 2021 1:39:21 GMT
So glad he is able to be seen and really hoping this gives answers and solutions!!
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Post by LavenderLayoutLady on Feb 4, 2021 2:17:43 GMT
Also, just throwing it out there, but maybe post symptoms & rash pics on Reddit?
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Post by mikewozowski on Feb 4, 2021 3:28:35 GMT
i was going to suggest something like the diagnosis show, as well. crowd diagnosis of some sort. seems kind of oout there, but if it is not any of the normal things doctors look for, then the crowd might be helpful.
as far as going to appointments with him ... they will probably have rules to follow on whether or not to let you in, and they don't like to stray from them much. if he is of sound mind, he can probably handle this on his own. they can always patch you in to listen. with your dog issues, it sounds like it would be much easier to stay home and meet up with him when you feel it is most necessary.
that rash looks like not much fun. i hope you all get it figured out and eradicated soon.
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seaexplore
Prolific Pea
Posts: 8,410
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Feb 4, 2021 3:45:31 GMT
So sorry you’re still dealing with this! Can you FaceTime with DH at his appointments so you’re “there” to hear and ask questions?
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 4, 2021 4:00:03 GMT
So sorry you’re still dealing with this! Can you FaceTime with DH at his appointments so you’re “there” to hear and ask questions? yes, he discussed it today and they said he is welcome to bring a laptop and they will happily include me in every conversation.
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Post by elaine on Feb 4, 2021 4:00:38 GMT
The potential for you to not be able to come in to the hospital/medical complex at all should be fully explored. My 85 yo mom just had surgery 3 weeks ago, and she needs help cognitively and physically getting around, but they wouldn’t let me in the hospital. They would not budge and I wouldn’t leave until they got a staff person to escort her to where she needed to go. I had to drop her off and then wait in my car for 8 hours until I got the call from post-op. And then with my surgery 1.5 weeks ago, at a different hospital from mom’s, my husband had to drop me off and then wait for the call from my surgeon and then another call from from post-op. He then drove to the main entrance to pick me up. So, depending on their set-up and their rules, you may not even be allowed into waiting rooms. ((hugs)) This is the only reason that we're considering my staying in Ohio honestly. I would stay in the hotel room instead of the waiting rooms instead of minimize exposure and judging by the amount of time I've spent in parking lots and sitting on curbs this year I feel like I can be more useful at home on a stable wifi connection. Usually when one of us is traveling we jump on a video chat from the time we get back to the room/home from work until morning so that we keep mostly the same communication schedule and we can still sleep together (I have to admit, I appreciate being able to turn the volume down on his snoring. ) That was very much how it was when he had his surgery in the spring-- I put him out at the front door and then was able to go see him post op for an hour (But the nurses all knew me from a friend of a friend so they let me hide out until shift change). I won't in any way push for more access and put the staff in danger and honestly both of us being exposed on flights and in the airport bothers me a lot. part of me just thinks I need to hunker down and quarantine here so that I can be 100% for whatever happens when he comes home. This is all just so awful, Steph. I wish that he and you weren’t going through this. It has been a marathon to get a diagnosis and treatment; doing it during the pandemic just makes it that much harder. (((Hugs)))
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 4, 2021 4:00:42 GMT
Also, just throwing it out there, but maybe post symptoms & rash pics on Reddit? i dont often use reddit- any suggestions on where to post?
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 4, 2021 4:03:29 GMT
I'm so sorry this is still so troubling for him & you both. I'm glad he has an appointment at the Mayo Clinic. I've gone back and reread most of the thread, specifically your posts on it. Although I obviously don't have a diagnosis for him, all the symptoms seem to point to an adult-onset autoimmune disease or disorder. He has lived with symptoms for years, manifesting in different ways. Swelling, joint pain, bone pain, elevated white blood cells, trouble breathing, rashes, eyesight loss, affected memory. There are many rare disorders that are overlooked due to rarity, and doctors being unfamiliar with them. At this point, I would google "Rare illnesses that manifest as rashes," and go from there. After reading, maybe finding some that match his symptoms, I'd make a list to use as a starting point, and ask the docs to test for rare autoimmune diseases. Just one disease that popped up when I googled is Erdheim-Chester
And in no way am I saying this is what he has, just showing that there's a lot out there, and the start to his answers might be found. Good luck. I'll keep you both in my thoughts. thats what we and several doctors have been doing. it always changes or something doesnt fit just right. his rheumatologist just did an avise blood sle monitor & autoimmune tester because hos ana is negative again, we are currently waiting on the results.
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lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,174
Location: Scotland, Scotland, Scotland
Jul 6, 2014 21:50:44 GMT
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Post by lesley on Feb 4, 2021 4:56:06 GMT
Is it possible that the rash isn’t connected to his other symptoms? You mentioned it started after his back surgery, which could suggest an allergy to the metal. It’s natural to assume it’s the undiagnosed condition that has got worse and is now manifesting itself in a new way, but maybe there are actually two different things going on. (Hickam's Dictum: "A man can have as many diseases as he damn well pleases.")
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Post by tryingtobewise on Feb 4, 2021 6:08:52 GMT
I’m so sorry he...and you are going through this. I am confident Mayo will provide some answers!
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