StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 24, 2020 13:37:14 GMT
Hey about beach time. Was he in FL at that awesome hotel getaway recently? I'm not saying it's from a beach, just jogging your memory in case you have 2020 brain. He was, but it had started before then. We actually noticed that it had gotten much worse because he took his shirt off while we were there and then we sat on the beach making phone calls and sending pics for an hour and then waiting at the pharmacy. :/
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 24, 2020 13:38:42 GMT
You should email Dr. Lisa Sanders who does crowd sourcing with the New York Times. There's a show on Netflix about it. Lisa.Sandersmd@gmail.com I will, right now. Thank you! Dermatology just called back and the referrals are all settled. Monday at 1:30 at Ohio State, fingers crossed I can go to this appointment with him. This is NOT less complicated with relayed info.
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Post by anxiousmom on Sept 24, 2020 13:47:26 GMT
I would also ask if there's a possibility that it is related to his MS. The rash may be the physical manifestation that you can see, but you also said he feels a deep pain in the incision area? It makes me think that his own immune system may be attacking his nerve endings that were affected due to injury and/or surgery. They have never been able to confirm the MS diagnosis. They were doing the MRI to look for the lesions in his spine since they aren't in his brain and found the injury instead. The surgery alleviated a lot of the symptoms that they were attributing to the MS potential but things are changing again as the nerves do whatever they're doing. his taste and smell are close to normal again but his pain levels are off the chart and he's had two instances where his hand has swollen huge and then gone back down with steroids. the pain doesn't seem to be the whole incision area, just about where this mess is. He doesnt have much feeling at all topically around the incision site but he has had awful back pain since a few days after surgery. Hows his vision? One of the odd ms symptoms that show up sometimes without lesions is blurry vision, double vision and nystagmus (jumpy eyeballs) I have this and get brain MRIs regularly because the neuro-opthomologists alwsys want to confirm no MS. Mine came from something else, but it’s an early sign.
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 24, 2020 14:48:19 GMT
They have never been able to confirm the MS diagnosis. They were doing the MRI to look for the lesions in his spine since they aren't in his brain and found the injury instead. The surgery alleviated a lot of the symptoms that they were attributing to the MS potential but things are changing again as the nerves do whatever they're doing. his taste and smell are close to normal again but his pain levels are off the chart and he's had two instances where his hand has swollen huge and then gone back down with steroids. the pain doesn't seem to be the whole incision area, just about where this mess is. He doesnt have much feeling at all topically around the incision site but he has had awful back pain since a few days after surgery. Hows his vision? One of the odd ms symptoms that show up sometimes without lesions is blurry vision, double vision and nystagmus (jumpy eyeballs) I have this and get brain MRIs regularly because the neuro-opthomologists alwsys want to confirm no MS. Mine came from something else, but it’s an early sign. He has lost about 1/3 of his vision in one eye- mostly peripheral it seems but his eyesight has also declined. no nystagmus or double vision but he does have to hold menus further and further away.
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theshyone
Pearl Clutcher
Posts: 3,400
Jun 26, 2014 12:50:12 GMT
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Post by theshyone on Sept 25, 2020 11:28:53 GMT
Hope it’s figured out soon. I’m thinking parasite too.
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 28, 2020 14:26:20 GMT
Heading to the derm now- appointment is at 1. This is how it changed over the weekend.
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 28, 2020 14:26:53 GMT
Side by side from 3 days ago
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Post by mom on Sept 28, 2020 14:29:17 GMT
Im glad you are going with him today! I am curious as to what this is! I hope you can get an answer.
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Post by mom on Sept 28, 2020 14:38:42 GMT
Hey about beach time. Was he in FL at that awesome hotel getaway recently? I'm not saying it's from a beach, just jogging your memory in case you have 2020 brain. He was, but it had started before then. We actually noticed that it had gotten much worse because he took his shirt off while we were there and then we sat on the beach making phone calls and sending pics for an hour and then waiting at the pharmacy. :/ Oh thats interesting. When you originally posted about this I did some reading and there are certain types of helminths (parasites) that gets worse in heat + can cause eye issues.
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Post by christine58 on Sept 28, 2020 14:43:57 GMT
StephDRebel Looks like whatever it is appears to be healing...good luck
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 28, 2020 18:19:27 GMT
*sigh* So today we learned that its a pretty rash bit they have no idea what it could be. Did a scraping and it didn't show fungus but it could be because he took an antifungal already. He gave him a topical antifungal and follow up in 8 weeks to biopsy if it isnt gone. More nothing, and shitty connection to boot. One day I swear we are going to get an answer while I lay in the grass in front of a doctors office.
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Post by mom on Sept 28, 2020 18:27:33 GMT
Oh Im sorry, StephDRebel , I was hoping someone would recognize it and know what it was.
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Post by liya on Sept 28, 2020 18:30:46 GMT
Oh Im sorry, StephDRebel , I was hoping someone would recognize it and know what it was. Agreed. Not the update I was expecting. I am sorry. I thought derm would be able to nail it.
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Post by greendragonlady on Sept 28, 2020 18:36:39 GMT
Sorry you don't have an answer yet. That's got to be frustrating.
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Post by elaine on Sept 28, 2020 18:41:44 GMT
*sigh* So today we learned that its a pretty rash bit they have no idea what it could be. Did a scraping and it didn't show fungus but it could be because he took an antifungal already. He gave him a topical antifungal and follow up in 8 weeks to biopsy if it isnt gone. More nothing, and shitty connection to boot. One day I swear we are going to get an answer while I lay in the grass in front of a doctors office. But, but, but the peas mostly thought parasite! Doesn’t the doctor know that we are usually correct when we are in agreement? Medical school, schmedical school. Humph! I’m sorry that you didn’t get any answers. I agree that it looks like it has moved on to another phase. Hopefully it is healing.
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 29, 2020 16:06:48 GMT
We are working to get in to see someone to rule out a parasite now. We saw three doctors yesterday and none had a clue. They didn't even bother to offer a diagnosis that doesn't apply like usual, just wrote it as a meds change and wished him luck.
There appeared to be zero concern for why it's there, just hoping it will go away.
It sucks to go to visit after visit after visit with not a single answer, but here we are.
He's got a few more visits in him before he gets tired of no answers and they get tired of pretending to give a shit and he suffers until the next debilitating flare up. Exciting!
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smcast
Drama Llama
Posts: 5,296
Location: MN
Mar 18, 2016 14:06:38 GMT
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Post by smcast on Sept 29, 2020 16:24:43 GMT
Beyond frustrating!
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Post by hop2 on Sept 29, 2020 16:28:14 GMT
I’m sorry, no answers sucks.
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Post by malibou on Sept 29, 2020 16:32:57 GMT
I'm so sorry the appt was a bust.
Is anyone addressing the pain he is in? That sounds horrible. Is any of this related to his mystery illness? I seem to recall a lot of his mystery illness cleared up after you moved.
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Post by flanz on Sept 29, 2020 16:43:19 GMT
We are working to get in to see someone to rule out a parasite now. We saw three doctors yesterday and none had a clue. They didn't even bother to offer a diagnosis that doesn't apply like usual, just wrote it as a meds change and wished him luck. There appeared to be zero concern for why it's there, just hoping it will go away. It sucks to go to visit after visit after visit with not a single answer, but here we are. He's got a few more visits in him before he gets tired of no answers and they get tired of pretending to give a shit and he suffers until the next debilitating flare up. Exciting! Just reading this entire thread now. I'm so sorry for your DH and for you to be going through this with such frustrating unhelpful medical appointments. (((HUGS))) I hope that tv doc Rhondito recommended calls you back. In the side by side pix, it was interesting to me that what had looked like liquid filled blisters were drying up. I hope that's a positive sign.
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J u l e e
Drama Llama
Posts: 6,531
Location: Cincinnati
Jun 28, 2014 2:50:47 GMT
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Post by J u l e e on Sept 29, 2020 16:48:24 GMT
I am just reading this now and I feel such frustration for you! I am so sorry this is happening. No answers just seems especially cruel when he’s in so much pain.
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StephDRebel
Drama Llama
Posts: 6,663
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Sept 29, 2020 16:56:45 GMT
I'm so sorry the appt was a bust. Is anyone addressing the pain he is in? That sounds horrible. Is any of this related to his mystery illness? I seem to recall a lot of his mystery illness cleared up after you moved. No. They don't really care about that either, he's not writhing in pain in their offices so it doesn't really count. Derm says it must be from the surgery. Surgeon keeps sending him out to referrals because the surgery appears to be perfect and he doesnt' believe it's from that so we just go home and deal with it. It's seems to be drying up, but that sucks because once it's gone it's just one more thing on the list of 'unrelated things' that they can't connect with each other while my husband suffers. If it's not visible at the appointment, it doesn't count no matter how documented it is. This flare will fade, he will get used to this new level of not being able to function and then when he wakes up unable to see, walk, or breathe again we start all over. They poke and prod, we spend a shit ton of money, he worries and cries, and I watch him slowly die some more and then whatever it is stops for a while and we start all over again.
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Post by liya on Sept 29, 2020 17:04:07 GMT
Have you been to an infectious disease specialist? Do you have a twitter account? I would just post a picture and hashtag it and see if you get any responses or maybe a medical website or a derm website without going for an appointment. IDK maybe I am grasping at straws.
PS-I don't understand how "they" don't know (re: the rash) it obviously looks like tunneling. If it is not fungal it must be something else. Shouldn't the doctor want to get to the bottom of it and diagnose?? I'm angry for you guys.
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Post by femalebusiness on Sept 29, 2020 17:06:11 GMT
We are working to get in to see someone to rule out a parasite now. We saw three doctors yesterday and none had a clue. They didn't even bother to offer a diagnosis that doesn't apply like usual, just wrote it as a meds change and wished him luck. There appeared to be zero concern for why it's there, just hoping it will go away. It sucks to go to visit after visit after visit with not a single answer, but here we are. He's got a few more visits in him before he gets tired of no answers and they get tired of pretending to give a shit and he suffers until the next debilitating flare up. Exciting! I am pissed for him. That is unacceptable.
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RedSquirrelUK
Drama Llama
Posts: 6,729
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
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Post by RedSquirrelUK on Sept 29, 2020 17:07:27 GMT
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Post by redshoes on Sept 29, 2020 17:14:49 GMT
You should email Dr. Lisa Sanders who does crowd sourcing with the New York Times. There's a show on Netflix about it. Lisa.Sandersmd@gmail.com I was going to suggest this as well, but couldn't remember the Dr's name....please check out the show on Netflix. It's amazing the response from around the world that share unusual symptoms and provide some ideas for diagnoses!!
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Post by liya on Sept 29, 2020 17:18:36 GMT
I think you may be correct. Some of the online photos look pretty close. But according to our friendly online research it states it only occurs in tropic locales. I have no idea why that would be.
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Post by Lexica on Sept 29, 2020 17:50:04 GMT
Have you considered emailing the photos to Dr. Sandra Lee? I know she is known as Dr. Pimple Popper, but she is a board-certified dermatologist and seems to really research an issue for her patients. I saw one show where she was unsure what the patient had and she did a group consult with a number of other dermatologists to see if anyone else had seen this particular skin disorder. They were successful in coming up with the proper diagnosis. I know her show pretty much just depicts her removing cysts and lipomas because that is what the audience wants to see, but as a dermatologist, she sees it all from these "pimples" to skin cancer and more. It makes me think that if you sent her the photos, she might be able to tell you right away what this is. If not, maybe she will research it for you. drpimplepopper.com/about-dr-sandra-lee/I hope you get an answer to this issue soon. As to your husband's pain, I would recommend a pain specialist. I had a great deal of pain after my spinal surgery. The surgeon didn't seem concerned since his part of the job was done perfectly. I saw a neurologist who told me surgeons don't want to deal with anything other than the structural issue. My structural issue was fixed perfectly, but I still had pain. The neurologist told me that my nerves were damaged and that resulted in pain. She likened them to cooked spaghetti noodles, once flattened in any way you could never plump them back up to look normal again. She sent me to a pain specialist who put me on a time-release pain medication (morphine) that gave me my life back. I just take a small pill every 12 hours now. It is amazing the difference it has made in my life. I still require some breakthru pain medication, but overall, I am quite happy with my pain management now. It sounds like your husband would benefit from a time-released pain medication too.
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Post by malibou on Sept 29, 2020 18:51:07 GMT
I'm so sorry the appt was a bust. Is anyone addressing the pain he is in? That sounds horrible. Is any of this related to his mystery illness? I seem to recall a lot of his mystery illness cleared up after you moved. No. They don't really care about that either, he's not writhing in pain in their offices so it doesn't really count. Derm says it must be from the surgery. Surgeon keeps sending him out to referrals because the surgery appears to be perfect and he doesnt' believe it's from that so we just go home and deal with it. It's seems to be drying up, but that sucks because once it's gone it's just one more thing on the list of 'unrelated things' that they can't connect with each other while my husband suffers. If it's not visible at the appointment, it doesn't count no matter how documented it is. This flare will fade, he will get used to this new level of not being able to function and then when he wakes up unable to see, walk, or breathe again we start all over. They poke and prod, we spend a shit ton of money, he worries and cries, and I watch him slowly die some more and then whatever it is stops for a while and we start all over again. I'm sitting here sobbing. This isn't right. I get that no dr. can know everything, even as a specialist, but don't they want to know. I would think that their level of curiosity about unrelated symptoms should be higher than mine. I just want to scoop you both into a protective bubble so you guys can spend some time together just existing, pain and trouble free. I will continue to keep you both tucked up in my warmest, safest, and most fun thoughts.
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Post by mom on Sept 29, 2020 18:57:11 GMT
Have you been to an infectious disease specialist? Do you have a twitter account? I would just post a picture and hashtag it and see if you get any responses or maybe a medical website or a derm website without going for an appointment. IDK maybe I am grasping at straws. PS-I don't understand how "they" don't know (re: the rash) it obviously looks like tunneling. If it is not fungal it must be something else. Shouldn't the doctor want to get to the bottom of it and diagnose?? I'm angry for you guys. This probably isn't a bad idea. If you end up doing this, let me know your twitter and I'll get me & my kids to reshare it. Maybe someone will see it.
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