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Post by mom on Sept 29, 2020 18:58:23 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.I had forgotten about her moving. I wonder when that happened vs when this showed up. Maybe something at the new house?
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Post by flanz on Sept 29, 2020 19:18:46 GMT
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. Me too. Huge hugs to you, and I'll keep looking for my magic wand. I want to fix this for you both!
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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 20:02:51 GMT
Moving may have had an impact, maybe not. We still don't really know.
I appreciate you even considering whether you've heard anything like this at all- Let me see what I can remember, I'm sure I'll leave out some majors but there is plenty to pick from.
His history-
He remembers when he was little that he would pass out sometimes but the doctors never really found anything and his family is full of secrets so he doesn't really have any medical history. Barely any relatives and all very, very distant on the DNA sites. He did two of the tests a few years ago hoping to be able to find out if his parents are really his parents (no luck) and monitors regularly. His mom died a few years ago (I never met her) and the day before she passed he talked to her and simply said "Mom, I have some questions about when I was younger" and she hung up on him. He called her every week but she just didn't like him at all. They didn't fight, she just always made him feel like a bother. Whatever. In 2009 he was hospitalized for a week with some sort of respiratory something or other but they never diagnosed him, he just got better and they were like "Huh, ok..go home." So he did and he was fine other than some stressed breathing when it was super cold. That was before I came around and before he asked many questions.
We got married in July of 13 and he started having terrible joint pain in October. He could barely move. On October 18th we were at a street festival and he had to stop and rest every 2 booths because he was exhausted and in so much pain. On the 19th he woke up in the night to pee and I heard him gasp in pain and looked at the time. It took him 43 minutes to hobble to the bathroom and back and he barely made it on his own. He was in tears.
We went to the doctor, got referred to rheumatology, and then eventually to neurology, infectious disease, and allergy and no one found anything. His ANA would be elevated here and there and when he was flaring up his white blood cell count would be up but not super crazy high. He would be fine one day and barely walking the next.
The following September I was on a business trip and he called and had been admitted to the hospital for what they thought was mrsa but not quite- his leg was swollen, red, hot to the touch, expanding rapidly, and ended up spreading from his heel to almost his knee. They pumped him full of everything they could think of and tested everything else and a few levels were kind of off but they were surprised at how good his numbers are for an overweight whatever year old (he turns 51 in October)
They thought his thyroid was the problem for a while. His neck would swell like crazy out of nowhere, we had to cut his shirt once because it was swelling so fast. We would rush to the doctor's office or emergency room and by the time he was seen he would be back to perfectly normal. A year or so later he started having memory issues. One day we were driving and he blew through a red light downtown. I don't know how we didn't get hit or hit someone but I'm grateful every day that we didn't. He saw the light turn red and it just never occurred to him to stop. He started losing his memory- now it's mostly not being able to find a word or just not being able to place something. I can also say something to him and he will swear the conversation doesn't happen. Thankfully we joke about it and it doesn't start fights, I just kind of expect that things are going to be forgotten and roll with it because good grief, it sucks!
A few months later he woke up with facial paralysis and we thought he had a stroke, diagnosed with bells palsy and when he went to the eye doctor he found that he had lost a ton of his peripheral vision. That's never gotten better and he still has mild paralysis in his face.
Calcium has been an issue. He has hard lumps on his fingers that they said are calcium deposits and at one point he had the worst kidney stones ever. All calcium. He had something like 18 at a time and had to have them blasted 7 or 8 times and they keep coming back. When they removed the growth in his spine during his surgery they said it was also a calcium growth. Since the surgery his hand swelled like crazy and they couldn't figure it out. It was about the size of a golf ball between his first finger and thumb but the entire hand was swollen. It hurt to even breathe near it and he couldn't bend his fingers at all. They did a shit ton of tests, did an underwater ultrasound, inspected him for cuts, scrapes, splinters, foreign materials, etc and couldn't find anything. They extracted some of the liquid and said it was calcium chloride (i believe, I don't have the charts open) It lasted about a week, they pumped him full of drugs (again) and it went away after about a week. Some lasting residual pain, but that's kind of everywhere at this point. Right at the same time as the bells palsy he lost feeling on the entire left side of his body. The doctor sterilized the largest safety pin the could find in the office, stretched it apart and stabbed him all over his body and he could only feel it on one side the whole way up and down. They did a MRI of his brain chasing a MS diagnosis because it was the only thing that they could kind of believe might justify all of this. We did another round with the head of Neurology at Ohio State and they found nothing really. They did another MRI of the brain and insurance denied one of the spine so they sent him home to wait for another flare.
Maybe 3 years ago or so his taste and smell started to change. I would make dinner and he would swear that the food had gone rancid. It happened at restaurants too. He started constantly checking the smoke alarms and swearing he could smell things burning. Super freaky. So scent and flavor profiles changed- for a long time he couldn't eat meat at all, it tasted terrible. He could sometimes tolerate meat if it were cooked to death, usually smoked. No blood, no way, no how. Coffee smelled like burning hair and I don't remember what chocolate tasted like, but twice he accidentally ate some and immediately vomited it was so bad. We started a diet of avoidance and tried to keep up with the changes. Eventually, he went 2 months only being able to stomach hot & spicy broth that was so hot I'm convinced it simply blinded his taste buds.
We suspected some things in our old home might be contributing, it was 100 years old and not maintained the way I would have preferred (we rent) so when the kids graduated, we moved. He had a few months where it seemed like things were getting better so we were hopeful but it was a matter of a few months before things started flaring again.
When they did, we went back to the neurologist and they were able to get the spinal MRI approved finally (5 years later) and they went looking for lesions that would indicate MS. Instead, they found that he had what turned out to be an old injury in his back and the day after memorial day He had a spinal fusion of his T7-10. They did the surgery, repaired the damage, found a calcified growth with oscillation, removed that and then found that he had new bone growth that had somehow stabilized it all these years. The surgery went well, he came out and immediately had no pain in his foot which was a first in years, and within hours his taste and smell had started to improve. We had been warned to not be excited about any improvements as they weren't the goal of the surgery, it was simply to prevent paralysis, and as the nerves healed things could go back to how they were. The day after surgery he ate a chocolate chip cookie and chocolate was one of the foods that would send him running from a room.
They said the type of injury that he had was from a sudden force and that he would definitely remember the accident in which it happened but he does not. When he mentioned that to his niece she said "I wonder if it was from when Grandpa would throw you against the wall when you were younger. You used to pass out for a while." I don't know if this is why his mother hung up on him, but maybe.
We are printing all of his medical records this week so that we can go through and research again. I'm going to get everything into a fresh binder and try to look at it with new eyes. As soon as I do I will absolutely send it on and figure out twitter.
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Post by crimsoncat05 on Sept 29, 2020 20:40:12 GMT
They said the type of injury that he had was from a sudden force and that he would definitely remember the accident in which it happened but he does not. When he mentioned that to his niece she said "I wonder if it was from when Grandpa would throw you against the wall when you were younger. You used to pass out for a while." I don't know if this is why his mother hung up on him, but maybe. ohmygosh, that is so heartbreaking to read. I feel horrible for you guys that you're having to go thru this with his medical issues (I agree- WHY, WHY, WHY don't they WANT to find out what's wrong? It's total BS that he's had to go YEARS with 'well, we don't know, so just wait to see what happens next...' And it's heartbreaking to think about your DH as a little kid who had who-knows-what happen to him. My DH had a tough childhood and when I hear him say things about it, I ache for the little boy he was who had to live thru those crappy things... I'm sure it's even tougher for you and your DH, not knowing what might have happened to the little boy he used to be. (((HUGS)))
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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 21:47:39 GMT
StephDRebel That story is breaking my heart. Poor little boy! Did he have lots of steroids before/after his surgery? There is a thing called tinea pseudoimbricata that looks quite a lot like the tinea fungus but is caused by over-use of steroids. I'm absolutely clutching at straws here.
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Post by lauradrumm on Sept 29, 2020 23:30:21 GMT
Is that shingles? Anything herpes related bubbles like that, itches and aches.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Sept 29, 2020 23:49:55 GMT
After looking at a ton of photos, I'm pretty sure it's a kind of parasite or worm.
As for everything else, the problem is you have a ton of doctors all looking at a part of the picture; you need one doctor who'll look at the whole picture. I wonder if rheumatology would be your best option. Really good rheumatolagists are good at figuring out difficult puzzles.
IT might be worth reading about MCAS or mast cell activation syndrome. Particularly anything by Dr Lawrence Afrin (he has a book, but also has some easy to watch videos on YT), Dr Theo Theoharides, or Dr Molderings, in Switzerland. It's a very difficult disorder for most doctors to diagnose, it has many comorbidities (other diseases found with it),and doctors can't agree on the definition and diagnosis. I trust those 3 doctors the most.
I hope you get this figured out. I really do.
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Post by scrappintoee on Oct 1, 2020 3:38:07 GMT
StephDRebel ..... I am sooo frustrated and sad for you and your DH !!! People recommending famous doctors reminded me----have ANY of the MANY, MANY doctors who've seen him sent piks and a full history to their colleagues, who could then ask their colleagues, until SOMEONE figures it out? Sheesh, maybe their professors that specialize in dermatology/ rare diseases from med school? With all of these visits and money you've spent, NO ONE has tried to help him with his severe pain? It's understandable that they don't have diagnoses for everything ELSE, but at LEAST send him to a good pain specialist !!! I realize that may not be realistic, since his MANY issues are so complicated, and sadly---we all know pain meds do NOT always work. The story of his grandfather throwing him against the wall and his mom hanging up on him (when he had life-altering questions ! ) are just heartbreaking, as was the pik of you lying in the grass while he was in the doctor's office. I HATE that people can't be with their loved ones at clinics, hospitals, etc !!! I'm sending up prayers for both of you! (( hugs ))
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Post by lesserknownpea on Oct 1, 2020 4:54:48 GMT
Do you have the means to go to the Mayo Clinic? It is the one place i know of where the different specialists truly look at the whole person in a collaborative way. I’ve seen it help someone personally.
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Post by femalebusiness on Oct 1, 2020 5:06:01 GMT
Ah Steph, I just hate that your hubby is suffering. I hope someone can help him out.
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Post by Legacy Girl on Oct 1, 2020 7:10:38 GMT
We've had mixed results with OSU. The Ross is top-notch for heart care, but we haven't been thrilled with the Wexner as a whole, especially when it comes to neuro. We've recently had a good experience with Riverside's huge new neuro unit. I almost think I'd start there. And if you don't get any satisfaction there, maybe Cleveland Clinic or Mayo? I hope you can find some answers soon, Steph. My heart breaks for what both of you are living through.
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camcas
Pearl Clutcher
Posts: 3,966
Jun 26, 2014 3:41:19 GMT
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Post by camcas on Oct 1, 2020 10:00:59 GMT
I vote parasite- hookworm,from dogs probably It is definitely NOT scabies or psoriasis or shingles
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Post by mikklynn on Oct 1, 2020 11:47:36 GMT
Do you have the means to go to the Mayo Clinic? It is the one place i know of where the different specialists truly look at the whole person in a collaborative way. I’ve seen it help someone personally. That is my suggestion, too. Giant hugs to both of you.
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Post by librarylady on Oct 2, 2020 14:32:29 GMT
If at all possible, I'd go to Mayo clinic. ...and find a physician who will see him in person, not a virtual exam.
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Post by kelbel827 on Oct 3, 2020 0:28:39 GMT
My suggestion was to go to Cincy or Cleveland, or both. Get as many people to look at this as you can.
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Post by donnab on Oct 3, 2020 1:57:57 GMT
I would also find someone who can look at the whole picture. It sounds like the biggest problem is that there are too many specialists. Has he been tested for genetic disorders?
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Post by gar on Oct 3, 2020 9:13:15 GMT
Your Dh's situation made me think of a tv show on in the UK at the moment about people with conditions/symptoms that are proving an ongoing mystery to many doctors. Their case is presented to a room full of specialists is various fields who discuss possibilities and one or two of them who strongly suspect a cause will follow through with tests etc and eventually find a cause. If only something like that could happen in real life!
I do hope you're able to get to the bottom of this soon!
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Post by gizzy on Oct 3, 2020 15:33:14 GMT
I'm sorry you guys are having to go thru this & I hope they can figure it out soon. Reading this makes me realize how scary it is when the medical field can't figure out the cause.
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Post by Basket1lady on Oct 3, 2020 18:18:33 GMT
I’m so sorry that your DH is going through all of this. It sounds like you are a great support to him.
I agree with others who suggest that you need a team to review your DH’s records, really looking over each scan and test. He needs a Dr House on his case.
In 2012, I had a series of symptoms that seemed unrelated and it was difficult to manage life while dealing with them. I couldn’t read, watch tv, drive, or even walk in a straight line. Vertigo, rapid heartbeat, nausea, and skin prickles were the weird symptoms. I ended up in the ER 3 times while on vacation. I spent months on antibiotics and countless tests. I was finally referred to the dizzy clinic at Walter Reed (yes, that was the name). A team of department heads reviewed my records and found a CT scan that had been read incorrectly. Instead of my sphenoid cavity being 95% clear, it was 95% blocked. AND there was a huge mass of scar tissue there from a long term infection. Because other specialists were reading the reports vs looking at the scans, it was never caught.
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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 Oct 19, 2020 19:45:28 GMT
Updates!!
We've been treating as fungal although it's not and it's not getting any worse but it's also not getting any better. The dermatologist's office at Ohio State called back and wants to see him next Monday (about a month earlier than they planned) but they didn't indicate if they thought they had more info for us.
He's in a kind of flare up right now. He's been crazy tired, has super crazy amounts of saliva, and was barely able to walk again this weekend- his left foot and leg are crazy with neuropathy again and just about all of his improvements from surgery have started to regress.
We have continued to research and found that taste and smell can be super early indicators of Parkinsons so we're exploring that more. No one has really wanted to consider it because of his age (51 yesterday) but we are prepared with information that presents a strong case for looking more into it.
He got a call back from Mayo clinic today and they want to set him up to be there for 3 twelve hour days of testing and trying to put some pieces together. I'm not thrilled to have to travel, but whatever it takes.
So, no real news other than more appointments and nonstop research but we get to branch off some more. Same as usual, but one of these times it's got to make a difference right?
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Post by crimsoncat05 on Oct 19, 2020 20:14:49 GMT
I'm sorry that he seems to be regressing from the surgery, but glad that you got an earlier-than-expected appointment with the Ohio State dermatologist, and that the Mayo clinic wants to see him. HOPEFULLY this will (finally) be the start of getting some ANSWERS and relief for you both. Just to have an idea of the cause, whatever it is- I can imagine how it feels not to know. good thoughts to you both for time passing quickly and peacefully between now and those appointments.
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Post by femalebusiness on Oct 19, 2020 20:25:40 GMT
I was thinking of your hubby yesterday and hoping he was better. I sure hope he can get some answers.
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Post by scrapmaven on Oct 19, 2020 22:46:30 GMT
I'm sorry to hear that this is not resoloving. Going to Mayo is probably the best thing for him, at this point. Let the experts look at him and run tests that might not be able to be run locally. Parkinsons makes sense, but so do many other things. He'll see neurologists, rheumatologists and might even work w/someone in the dysautonomic clinic. You're going to the best place for your dh's symptoms. May he find answers and treatment that makes him feel much better.
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peaname
Pearl Clutcher
Posts: 3,389
Aug 16, 2014 23:15:53 GMT
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Post by peaname on Oct 20, 2020 11:11:27 GMT
I’m so glad to hear he will be going to Mayo.
I assume he’s tried the elimination diets? Especially no wheat? It seems so extreme for a food allergy but I’ve heard some amazing transformation stories.
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Post by christine58 on Nov 11, 2020 18:30:48 GMT
StephDRebel How is your DH?? Just read your post about the dog and remembered about his fungus etc.
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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 Nov 12, 2020 0:43:32 GMT
I’m so glad to hear he will be going to Mayo. I assume he’s tried the elimination diets? Especially no wheat? It seems so extreme for a food allergy but I’ve heard some amazing transformation stories. He went raw, vegan, gluten free for 4 years. He felt great when he was ok but he eventually couldn't stomach any fruit or vegetables with his taste/smell changes.
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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 Nov 12, 2020 0:46:07 GMT
StephDRebel How is your DH?? Just read your post about the dog and remembered about his fungus etc. He had a pretty bad flare this week and couldn't walk for 2 days but we used a cbd rub and soak that worked some. We are still waiting for the mayo appointment to be scheduled. Covid doesn't make any of this easier but he's ready to go as soon as they get the date. We've been doing an antifungal on the rash that's definitely not fungal 3x a day with no change.
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Post by revirdsuba99 on Nov 12, 2020 3:48:02 GMT
StephDRebelContinued (((((((((((HUGS)))))))))) for you both,!!
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spoonpea
Shy Member
Posts: 27
Jan 11, 2015 8:45:41 GMT
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Post by spoonpea on Nov 16, 2020 8:14:43 GMT
Oh my Steph....this is my first time seeing all this! I hope your husband gets some answers and relief from Mayo and soon!
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inkedup
Pearl Clutcher
Posts: 4,837
Jun 26, 2014 5:00:26 GMT
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Post by inkedup on Nov 16, 2020 8:54:55 GMT
I'm sorry your husband and family are still struggling for answers. It can't be easy, especially for someone like you. (I mean that as a compliment. You have always reminded me of my tough as nails sister, one of the fiercest and best ladies I'll ever know.)
Sending encouragement and hope your way.
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