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Post by misadventurous on Nov 28, 2018 17:25:50 GMT
Wow - that sounds just awful. So sorry he is dealing with this. I once listened to a podcast that featured a woman with really perplexing symptoms that her doctors were unable to turn into a diagnosis. She ended up getting help from a website called CrowdMed which is like asking the Peas to diagnose, but with off-duty medical professionals who enjoy this sort of detective work. No idea if it's appropriate in your DH's situation, but I thought I'd bring it up.
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wellway
Prolific Pea
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Jun 25, 2014 20:50:09 GMT
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Post by wellway on Nov 28, 2018 17:29:48 GMT
I have no info or knowledge I can add but I just wanted to say I'm so sorry you are both facing such a complex set of symptoms.
Will be thinking of you and hoping you get some answers.
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RosieKat
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PeaJect #12
Posts: 5,418
Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Nov 28, 2018 17:40:40 GMT
This reminds me of medieval stories of people with late stage syphilis. I'm not tossing this out to be offensive, so I hope none is taken - just thought I'd throw that into the mix. This has to be so difficult for both of you, I hope answers come soon!
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Post by mellyw on Nov 28, 2018 18:26:48 GMT
I’m guessing multiple auto-immune diseases are going on. In a 2 year time period, I was diagnosed with Rheumatoid Arthritis, Sjogrens Syndrome, Raynauds Disease, Osteoarthritis, Ulcerative Colitis and Trigeminal Neuralgia. My body has been failing me since I was a 5 year old with a brain tumor and Orbital Cellulitis that I wasn’t supposed to survive, but that was crazy spectacular even for me.
So many with RA, which the tests are showing your DH has, have other autoimmune diseases. And they like to mimic each other, but have subtle differences that can make each one hard to separate and diagnose.
You/he need to keep,pushing. Unfortunately, without medical intervention these things rarely get better. I know it’s terribly frustrating, I went thru 2 Rheumatologist’s before I found one who listens to me.
And while I can tell you general symptoms, or Webmd can, the truth is these diseases tend to be individual. Plenty of Doctors will tell you unequivocally that RA doesn’t effect the neck. Guess what’s in my neck that causes migraines? RA. A good Doctor is worth their weight in gold, but it may take a little time to find the right one for your DH.
I want to encourage you, Steph to keep being your DH’s advocate. I’ve had serious medical problems my whole life, and tend to be more like a man, hide my symptoms and hope it goes away. My DH is my advocate, knows if I’m going to the Doctor he may need to go with me so I can’t downplay what I’m going thru. And when I’m in an autoimmune fog, I can forget things, so if my DH isn’t available, I write things down in bullet points and take it with me, and I encourage you both to take notes. Medical info can be overwhelming, the notes have been invaluable to me over the years.
Last, I’m sorry he’s going thru this. Medical stuff isn’t fun, and when it turns into medical mystery, you can start to doubt yourself. I truly hope you can get answers soon, and your DH some relief from the pain and uncertainty.
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Post by shamrock on Nov 28, 2018 19:06:35 GMT
Some of his symptoms jump out to me as side effects of topomax. Depending on when they presented and when he started the topamax, it would be worth checking.
Make sure all doctors are communicating & sharing info. That can be a big benefit of places like Mayo (& maybe Cleveland I’m not familiar with it.) when the different specialists work as a team it seems that so much more can be accomplished.
I hope answers come soon. Dealing with the questions is tough.
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PrettyInPeank
Pearl Clutcher
Posts: 4,691
Jun 25, 2014 21:31:58 GMT
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Post by PrettyInPeank on Nov 28, 2018 19:23:09 GMT
Did they do a spinal tap and full MRI of his entire spine, too? MS can have mini lesions that dont show up on MRI and only show up in fluid, or lesions only on the spinal cord.
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Post by birukitty on Nov 28, 2018 22:53:03 GMT
I am so sorry to hear that your husband is having such serious medical issues Steph. I also think that taking him to either the Mayo Clinic or the Cleveland Clinic (I'm not familiar with this one) sounds like the best idea. It seems to me that finding a hospital where all of the doctors and specialists communicate and work together is crucial to helping your husband and finding a diagnosis to what he has.
I've been on Topomax for several years myself as a preventative for migraines. I'm one of the lucky ones-it doesn't effect me hardly at all as far as side effects are concerned. It doesn't make me dopey, it doesn't make food taste funny. If anything it might mess up my memory a bit. But from what I have heard from my migraine facebook groups many people have side effects from it and can't stay on it at all. They report that it makes them unable to think clearly, it makes food taste terrible and sometimes they can't even form a clear sentence. It is a very strong drug and I would consider asking your husband's doctor for a substitute for it after finding out why he is taking it. From what I can remember it was originally made as a seizure medication (I could be wrong) but it now used quite a bit as a migraine preventive.
I wish you and your husband much luck in finding a quick diagnosis to his mystery illness. I wish you much strength (not that you need it, you are the strongest woman I know) as you go forth supporting him in this journey. I will pray for you both and think of you.
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GiantsFan
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Posts: 8,300
Site Supporter
Jun 27, 2014 14:44:56 GMT
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Post by GiantsFan on Nov 28, 2018 23:07:24 GMT
I have no input on a diagnosis, but just wanted to say that I hope the doctors can identify the cause and he can get proper treatment.
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purplebee
Drama Llama
Posts: 6,742
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Nov 28, 2018 23:33:48 GMT
Steph, so sorry to hear this about your hubby. Hope he can find some answers soon and get some relief. I'll keep you both in my prayers.
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Post by keesha on Nov 28, 2018 23:43:37 GMT
Research vitamin deficiencies. It could even be digestive if he's not absorbing from food. I had all the symptoms you mentioned when I had a B12 deficiency. Dr's don't go there unless you insist. Especially if you aren't older.
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gsquaredmom
Pearl Clutcher
Posts: 4,082
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Nov 28, 2018 23:52:19 GMT
Research vitamin deficiencies. It could even be digestive if he's not absorbing from food. I had all the symptoms you mentioned when I had a B12 deficiency. Dr's don't go there unless you insist. Especially if you aren't older. I remembered today that one of my students’ fathers needed B12 shots after it was finally diagnosed. His symptoms were very strange, too. He was in his fifties at the time.
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PrettyInPeank
Pearl Clutcher
Posts: 4,691
Jun 25, 2014 21:31:58 GMT
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Post by PrettyInPeank on Nov 28, 2018 23:54:41 GMT
Research vitamin deficiencies. It could even be digestive if he's not absorbing from food. I had all the symptoms you mentioned when I had a B12 deficiency. Dr's don't go there unless you insist. Especially if you aren't older. Agreed. I practically begged for vitamin testing and found my symptoms improved with some supplements.
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StephDRebel
Drama Llama
Posts: 6,668
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Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Nov 29, 2018 0:16:22 GMT
I'm going back through all of the messages and will be sure to answer any questions that I can.
No spinal tap yet. We've been working with both rheumatology and neurology and have been evaluated by his primary, a podiatrist, ENT, and several other specialists. They checked vitamin levels and they've gone back to a normal range with injections and supplements.
The symptoms go back multiple years to some degree, the Topamax has started in the last month but we're definitely watching for any worsening symptoms with it.
He got an appointment today for an MRI from the waist up, no spinal tap yet but it's on the list after MRI.
The Topomax was initially prescribed after he saw the neurological ophthalmologist because they were worried that it could be caused by a migraine of some sort. Now, they don't believe that is the case but they are using it to prevent seizures. He hasn't currently had seizures that we're aware of but they're not sure that he hasn't either.
I'm definitely not offended by any of the questions-- We did a full blood panel before we got married and he was clean so I'm pretty sure it's not syphilis and it's definitely not drug use. He's only slept with 2 women and he has a sister who ran away when he was 5 and then overdosed on heroine when he was 15, he is so anti-drug use that he doesn't even like to take his prescriptions. He's smoked marijuana twice and the first time wasn't until last summer in Amsterdam. I would fall over dead from shock if he had a dark and shady past that I didn't know about. I kind of wish he had more wild stories to entertain me with, ha.
he hasn't done a ton of traveling, he's had to cancel the trips this year that he was scheduled to go on. We've done a bit of traveling in the last 5 years but pretty local (NYC, NOLA, NC, TN, VA, DC, MD, KY, FL, a caribbean cruise and then a few weeks in Paris, Amsterdam, and Brussels) There is always the chance for picking something up, but we were never close to roughing it and he only drank bottled water in the caribbean and the other trips were family vacations or work trips that he tagged along on so he wasn't eating street meat or shady tacos.
Our water is city water and it's not great but I haven't had it specifically tested. He showers in it, but we use bottled water from the cooler for all cooking and drinking.
There is always the chance some of it could be a meds reaction, but he hasn't been on anything consistently for the entire time and we've not been able to find any consistency with meds and flare ups. He doesn't take any supplements or alternative treatments. I do diffuse lavender oil at night but that's been consistent through the ups and downs with the symptoms.
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RosieKat
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PeaJect #12
Posts: 5,418
Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Nov 29, 2018 0:34:14 GMT
It's so frustrating not having answers. I've had times in my life where I honestly reached the conclusion that I didn't care if it was xyz awful disease, the not knowing was just too much. Thanks for not being offended by my mention! I wish I had something truly useful to offer, I know this is hugely stressful for both of you and not being well is just officially capitol-D Depressing after time.
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Post by busy on Nov 29, 2018 0:46:09 GMT
One other thing - and this may not be possible, but thought I'd at least suggest it - if you have access to an HMO-type medical group like Kaiser Permanente, I'd consider that.
My stepfather struggled with a whole set of strange symptoms for several years and saw all kinds of top-rated specialists in Seattle. Some treatments helped some things, but he wasn't getting overall better. And then. for totally unrelated reasons, they switched their insurance to Kaiser. He continued seeking a diagnosis with Kaiser and the coordinated medical records, where all providers and access to all records, and having a care coordinator who oversaw his case made a huge difference. They had a solid diagnosis (of a couple different autoimmune conditions that presented atypically) and began treatment that gave him his life back.
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Post by mom2samlibby on Nov 29, 2018 1:12:52 GMT
I've seen a few mention magnesium deficiency and that is the one I'll add to. I started following this protocol in Feb and have had my health improve immensely. Some of the issues I were dealing with were chronic fatigue, shortness of breath, heart palpitations, muscle/body pain, numbness in my leg and face, migraines, and vertigo. I know there were others but those were the main ones. I had seen several different doctors and undergone quite a few tests. All the doctors could say was that I was fine. I stumbled along this facebook page last year www.facebook.com/groups/MagnesiumAdvocacy/ and lurked for awhile. There were some things on there that I thought were kind of out there, such as no supplemental B vitamins, nor supplementing with D3. However, the more I read and learned, and the more I saw that people's health was improving, the more I realized I should give it a try. I committted to following their recommendations in February and said I would give it one year. If I didn't see major health improvement after that, I'd keep looking or go back to what I had tried in the past. After just two months on it, I noticed I had more energy and I was sleeping better. By May, I realized I hadn't had a migraine in awhile. My heart palpitations and shortness of breath are gone. I wake up in the morning and I don't drag through my day. I've been so amazed at how much better I feel. This is the protocol: gotmag.org/how-to-restore-magnesium/ There is a must watch video there. The video talks about how our minerals are out of balance and that is where health issues come from, especially iron overload and magnesium potassium deficiency. They have a new website here -- therootcauseprotocol.com/These are the products I ordered in February and committed to taking for a year. www.jigsawhealth.com/root-cause-protocol-products/rcp-phase-1/www.jigsawhealth.com/root-cause-protocol-products/rcp-phase-2/www.jigsawhealth.com/root-cause-protocol-products/rcp-phase-3/It's terrible to deal with health issues, especially when you can't figure out what is causing them or how to fix them. I've seen a lot of people's health improve with this protocol. The facebook has people sharing quite often about improvements they've seen. I hope you find answers. Please consider trying this. Added: I see you mentioned that his blood work was fine. From what I understand, the way most labs test magnesium is not an accurate test. This is the testing that is recommended -- requestatest.com/mag-zinc-copper-panel-with-iron-panel-plus-vitamin-a-and-vitamin-d-test?fbclid=IwAR2h3_dWmHPf37GihYbspVgA5TxZRUv9Gi1pqeuD1MNkU0LNssMRgXlfwUQ
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Post by iamkristinl16 on Nov 29, 2018 1:29:04 GMT
I haven’t read the replies yet, but I would see a functional doctor. He should be checked for high levels of heavy metals. I was listening to a podcast the other day and the person being interviewed had some very strange symptoms. In the end, she blames her work in a paint store to her health issues. I will see if I can find the podcast again. I worry about my dh as well. He has worked in an auto center for years and now works in a place that sells auto paint. The smell in the building is horrible and I know he has to be exposed to some nasty chemicals.
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Post by iamkristinl16 on Nov 29, 2018 1:31:17 GMT
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Post by cindyupnorth on Nov 29, 2018 4:30:06 GMT
If you watch "House", it's NEVER Lupus. Or sarcoidosis On a serious note, there are quite a few things about this that remind me a lot of something that a physician I once knew went through - it was extremely hard to diagnose and I guess it can present very differently in different people. It's called Guillain-Barre syndrome. Whatever it is, I hope he gets some answers and relief soon. It doesn’t sound like guillain at all. I’ve seen several patients with GB
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Post by busy on Nov 29, 2018 4:38:38 GMT
Or sarcoidosis On a serious note, there are quite a few things about this that remind me a lot of something that a physician I once knew went through - it was extremely hard to diagnose and I guess it can present very differently in different people. It's called Guillain-Barre syndrome. Whatever it is, I hope he gets some answers and relief soon. It doesn’t sound like guillain at all. I’ve seen several patients with GBSerious question. Don't women expect to be groped at the club? And no, I'm not saying it's right, but a pattern has been long established. I'm just saying it DOES sound like the case of the person I knew. Which was very difficult to diagnose because it was an atypical presentation.
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Post by mellyw on Nov 30, 2018 1:36:03 GMT
One other thing - and this may not be possible, but thought I'd at least suggest it - if you have access to an HMO-type medical group like Kaiser Permanente, I'd consider that. My stepfather struggled with a whole set of strange symptoms for several years and saw all kinds of top-rated specialists in Seattle. Some treatments helped some things, but he wasn't getting overall better. And then. for totally unrelated reasons, they switched their insurance to Kaiser. He continued seeking a diagnosis with Kaiser and the coordinated medical records, where all providers and access to all records, and having a care coordinator who oversaw his case made a huge difference. They had a solid diagnosis (of a couple different autoimmune conditions that presented atypically) and began treatment that gave him his life back. Busy brings up a really important point. Continuity of care by sharing info. I’ve been very lucky that my PCM has been that for me, especially because my Dentist has been thrown in the mix with my Trigeminal Neuralgia. That’s part of why I say a good Doctor is worth his/her weight in gold. My PCM doesn’t have to be the coordinator he’s become for me, and I thank him every time I see him for it. He knows I have serious “white coat syndrome” and tend to shut down with Doctors, but my trust and easiness with him let’s me ask questions about all my care. And I’ll echo what some others have brought up. B-12 testing. My DH’s grandmother went thru a rough go a couple years ago, we all thought dementia based on her age. Her B-12 was way off, started shots and the dementia symptoms disappeared. My 50 year old SIL started having issues a year ago, brought up Grandma’s B-12 issues, sure enough she was having the same problems.
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