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Post by hop2 on Nov 28, 2018 4:34:16 GMT
Thank you so much. I've at least got some things to research further. He's been doing relatively well, but I know he's struggling and I know that he only let's on about 70% of what is actually happening in order to keep me from worrying. We had a big fuss about him being honest about what is going on and allowing me to choose how much I need to worry vs being blind sighted at doctors appointments. The food thing is really wearing on him with the holidays and I think it's the biggest thing wearing on us. We didn't realize how much of our relationship revolves around food- cooking, eating, having a drink on the porch, etc. Thanksgiving really played on his emotions, and we're finding new ways to spend time together. I need to work on my diet, I've been eating terribly because I feel so bad for him that I don't want to eat in front of him. We can't go into restaurants, etc. We've started doing a yoga class together and we're researching as much as we can to try to figure out what this looks like in the future. I appreciate all of your guesses, and your support so so much. Now that’s a subject I know a bit about. My dad was always hiding his symptoms, Most especially from me. I was the youngest child and he pretty much decided he needed to shelter me from it as much as possible. You are right to stay on him about being honest - if not with you at the very least with his doctor. Any small detail can be the break they need to Crack the diagnosis mystery. Perhaps he will be honest in his journal if you agree not to read it? If he agrees for his doctors to give you medical info then try to speak with them separately or by phone or email. Because sometimes it’s not about keeping you in the dark about things but about his inability to see you see him falter/ fail/ be hurt. It wasn’t that my dad didn’t want me to know. It was that he couldn’t see me loose my ‘my dad is my super hero’ feeling right in front of him.
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StephDRebel
Drama Llama
Posts: 6,668
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Nov 28, 2018 4:52:44 GMT
Thank you so much. I've at least got some things to research further. He's been doing relatively well, but I know he's struggling and I know that he only let's on about 70% of what is actually happening in order to keep me from worrying. We had a big fuss about him being honest about what is going on and allowing me to choose how much I need to worry vs being blind sighted at doctors appointments. The food thing is really wearing on him with the holidays and I think it's the biggest thing wearing on us. We didn't realize how much of our relationship revolves around food- cooking, eating, having a drink on the porch, etc. Thanksgiving really played on his emotions, and we're finding new ways to spend time together. I need to work on my diet, I've been eating terribly because I feel so bad for him that I don't want to eat in front of him. We can't go into restaurants, etc. We've started doing a yoga class together and we're researching as much as we can to try to figure out what this looks like in the future. I appreciate all of your guesses, and your support so so much. Now that’s a subject I know a bit about. My dad was always hiding his symptoms, Most especially from me. I was the youngest child and he pretty much decided he needed to shelter me from it as much as possible. You are right to stay on him about being honest - if not with you at the very least with his doctor. Any small detail can be the break they need to Crack the diagnosis mystery. Perhaps he will be honest in his journal if you agree not to read it? If he agrees for his doctors to give you medical info then try to speak with them separately or by phone or email. Because sometimes it’s not about keeping you in the dark about things but about his inability to see you see him falter/ fail/ be hurt. It wasn’t that my dad didn’t want me to know. It was that he couldn’t see me loose my ‘my dad is my super hero’ feeling right in front of him. His symptoms got much worse while I was in Italy and he didn't want to stress me while I was out of town so our communication struggled during that trip. He wanted to protect me from worry when there was nothing that I could do and he can't lie to me and get away with it so he just stayed busy. I saw and felt him pulling away but didn't know what the root problems were. That started as a little tiff and then ended up with a lot of conversation about intention, the importance of in information and allowing me to be a part of his whole journey like he vowed to me when we were married. He definitely is a man's man and wants me to be stress free and see him as my protector and not someone to take care of. I think were as prepared as we can be for whatever may come, were just anxious to have some idea of what kind of journey we have in store. We both see a counselor every few months because we believe that an objective opinion is valuable and plan to continue and increase if necessary. I believe he's trying to be as honest as he can about things now and I'm planning my schedule around his appointments and have full access to his medical records. His counselor really helped him to see that information is by biggest anxiety relief. Thank you.
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gsquaredmom
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Posts: 4,082
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Nov 28, 2018 4:53:03 GMT
Has he been checked for heavy metal poisoning?
I think it is possible he has more than one thing going on, but seeing his occupation and reading those symptoms made me think of heavy metal poisoning to explain many of them.
Is there some medical specialty that deals with occupational diseases?
ETA perhaps another chemical exposure if not metal?
Taking time off work and symptoms abating make me think it’s work exposure.
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Post by LavenderLayoutLady on Nov 28, 2018 5:20:07 GMT
More thoughts, feel free to shoot them down...
Is he taking supplements? OTC supplements aren't as regulated as meds are.
Could there be a med+med/supplement/vitamin reaction?
Have your water tested. Even if he's not drinking it. He may be cooking with it, bathing with it. Even if he's the only one affected, he might just be the first showing symptoms. Or maybe he is more susceptible to a toxin in the water.
This is just thrown out there, and in no way is a reflection about your dh, because I don't even know him... My uncle has loss of sensation and inability to sweat on one side of his body. Doctors have chalked it up to drug use in his teens and twenties.
Has he travelled recently? Before the symptoms started? Any chance he picked up parasites in food he ate, soil he touched, water he swam in?
Have his liver and kidneys checked for function. If a parasite is secreting toxins, it should show through those tests.
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Post by Basket1lady on Nov 28, 2018 5:44:49 GMT
Crabbiness, anger, and overwhelming fatigue were some of the main symptoms of a brain infection that I had. They found a CT scan had been read wrong and that I had a massive infection in my sphenoid sinuses. It wasn’t until I snapped at a nurse who had always been nothing but kind that I confessed that I was always angry and yelling at my kids, which wasn’t like me.
I had blamed the anger on my frustration with my symptoms, but it’s actually a big symptom of brain issues. They took another look at that CT, ordered a new one, and sent me to a board of specialists at Walter Reed. The second CT showed a mass on my right inner ear. I had horrible vertigo, which was caused by the mass pushing on my inner ear.
I know you didn’t mention vertigo, but the anger and scent issues could be sinus related. A sphenoid infection is pretty rare, but those sinus cavities are deep in the brain and can’t be visualized externally. I hope you find some answers.
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Post by cadoodlebug on Nov 28, 2018 6:00:57 GMT
I was going to say Lyme Disease because we know a young woman who had all kinds of tests to figure out what was wrong with her and it took several years. The thing that stuck out was that she could only stomach potatoes. She's now at a facility where she is *learning* all functions from scratch.
Hugs to you and your DH. I hope the doctors can figure it out.
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Post by stacmac on Nov 28, 2018 6:06:04 GMT
I haven't read all responses. My first thought was MS which can take a while to get diagnosed!
My second thought was that my grandma had many of these symptoms from her scleroderma. It's an autoimmune disease, I'm not sure if you've heard of it?
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Post by LavenderLayoutLady on Nov 28, 2018 6:06:41 GMT
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Post by stacmac on Nov 28, 2018 6:10:06 GMT
Sorry, I'm writing again because I read the post again and it really sounds like my grandma's scleroderma: the bumps of the skin, the way she eventually walked, the stomach upsets, the problems with different temperatures many other things.
There are way better treatments for it now and I hope you find an answer soon!
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Post by gotranch on Nov 28, 2018 6:33:41 GMT
I agree with the thought that it is some type of auto-immune issue. Lupus, MS, Rheumatoid Arthritis that the Peas suggested are all auto-immune diseases. I strongly suggest you go to the Mayo Clinic. The main clinic is in Rochester, MN. When you make an appointment there, he will be evaluated by a team of specialists who work together to make a diagnosis. Often they will tell you to plan to be there a couple days while they run labs, tests and meet with Drs etc. I am sure there are other Peas who have more experience with the Mayo Clinic than I do, but if it were my DH that is where I would be sending him. Hope he feels better soon.
Also, you do not need a referral to go there. You can make your own appointment.
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,766
Jun 25, 2014 23:21:30 GMT
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Post by scrapngranny on Nov 28, 2018 6:43:54 GMT
My guess, and it’s only a guess, is lupus or some other autoimmune disease.
I hope you get some answers soon. Prayers.
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Post by flanz on Nov 28, 2018 6:53:50 GMT
I'm so sorry this is happening. Sending hugs and love to both of you.
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Post by mrst on Nov 28, 2018 13:27:20 GMT
I had Guillian Barres and it didn't present at all like that. All I can say is many if these auto immune diseases are diagnosed more by what they aren't . There are few really positive tests for many neurological diseases. Maybe concentrate on treatment to feel better rather than diagnosis, although I do know how frustrating it can be not knowing what's wrong.
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Post by mikklynn on Nov 28, 2018 13:37:14 GMT
I'm sending my hugs to you both. How terrifying. StephDRebel You continue to fight for him and for answers. I am glad you are going to a university. You clearly need a major medical center.
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Post by Linda on Nov 28, 2018 13:40:15 GMT
My second thought was that my grandma had many of these symptoms from her scleroderma. It's an autoimmune disease, I'm not sure if you've heard of it? I wondered about scleroderma as well - it definitely sounds either auto-immune or neurological. Prayers for answers and relief
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Post by GamGam on Nov 28, 2018 13:56:47 GMT
You mentioned low testosterone. How low? A very low level can cause several of the symptoms you list. DH’s got so low that he was barely functioning: joint pain, no energy, etc. Not the total answer for your DH, but supplemental injections have been a life giver for my DH.
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paigepea
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Jun 26, 2014 4:28:55 GMT
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Post by paigepea on Nov 28, 2018 14:10:09 GMT
Hugs to both of you!
Since autoimmune diseases travel together I’d say he has a combination of 2-3 disorders which is making it harder for you to figure out.
My initial thought was has thyroid been checked. Once you have one autoimmune disorder you’re susceptible to so many more. My under active thyroid caused extreme joint pain, pressure and pain in my head that mimicked migraines, and extreme cold.
The lupus idea sounded good.
Autoimmune issues are awful. I hope you get answers soon.
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Deleted
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Jun 10, 2024 1:36:17 GMT
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Post by Deleted on Nov 28, 2018 14:22:16 GMT
A lot of his symptoms sound like TIA.
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peabrain
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Jun 25, 2014 22:18:04 GMT
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Post by peabrain on Nov 28, 2018 14:26:33 GMT
Can you tell me, because I'm slow... what is he on the topomax for??? topomax FDA warningskidney stones, eye problems.... I'm on topomax but my memory problems are when I'm speaking I'll say, "Can you pass me the..." and I'll forget the word for fork. And I have to say, "silver thing with tongs right there." So I really seem like an idiot at times. I know it's different for everyone. My doctor said he had a patient in the ER once who had her doctorate in something or other and literately could not speak. The words would not come. I'm asked about kidney function at my appointments. I don't drink soda because it tastes funny. I know it's used for other things, I'm on it for migraines. What is he on it for if I may ask?
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Post by LisaDV on Nov 28, 2018 14:34:50 GMT
No answers. Just hugs, positive thoughts and prayers.
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Post by malibou on Nov 28, 2018 14:50:45 GMT
Damn this sounds brutal for him. I will keep you both in my thoughts tucked up safe and sound. Wishing him a medical team that can discover the answers you so desperately are seeking.
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Post by jassy on Nov 28, 2018 15:08:24 GMT
This sounds SO MUCH like my sister's symptoms (clumsiness, memory, headache, vision, hearing, cold, loss of feeling in different areas of her body, etc etc) - she was *finally* just diagnosed with a benign brain cyst at the base of where her brain/spinal cord meet - like what Urban Meyer has. But I know you said the latest MRI ruled that out.
I am so sorry you are both going through this - how awful. I hope you get answers very soon!!
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Post by Crack-a-lackin on Nov 28, 2018 15:16:53 GMT
I’m so sorry you’re going through this. I would definitely explore switching from Topomax, as that does cause memory, taste, and smell issues. Also have him checked for Celiac disease. It’s an autoimmune and can present like MS, Lyme, or Lupus.
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melissa
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Jun 25, 2014 20:45:00 GMT
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Post by melissa on Nov 28, 2018 15:18:47 GMT
He needs to see neurology and rheumatology.
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Post by missbennet on Nov 28, 2018 15:21:43 GMT
What a hard thing, and it's even harder because it seems like time just yawns along as you get more tests, have more symptoms and try to piece it all together.
Two things that might be resources - first, a site called CrowdMed which does what this thread is doing, but on a more detailed level - it costs a flat fee I think and they dig through all the labs and diagnostics to date to make suggestions about what to look at next. It's like a medical mystery team, online.
Second is the place I heard about CrowdMed, the 'Terrible, Thanks for Asking' podcast, which is about all kinds of hard things life throws at us, discussed in a funny, compassionate and candid way. I really enjoy it.
Hope you two find answers soon!
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maryannscraps
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Aug 28, 2017 12:51:28 GMT
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Post by maryannscraps on Nov 28, 2018 15:32:03 GMT
Get him to the Cleveland Clinic -- it can't be all that far from you. It's one of the top hospitals in the country. They'll have seen everything and have a wide experience with multiple intertwining symptoms like your DH has.
I can't say enough about going somewhere that has top experts in many areas -- Mass General saved my DH's life when he had what turned out to be an extremely rare disorder with multiple crazy seemingly-unrelated symptoms.
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Post by 50offscrapper on Nov 28, 2018 15:32:13 GMT
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DEX
Pearl Clutcher
Posts: 3,356
Aug 9, 2014 23:13:22 GMT
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Post by DEX on Nov 28, 2018 16:08:39 GMT
Get him to the Cleveland Clinic I agree with this. A large medical center is what he needs right now. He also needs specialists as Melissa mentioned. Best of luck to you and your husband.
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Post by blueeyedpups on Nov 28, 2018 17:14:19 GMT
I thought maybe parathyroid disease? Symptoms include neck swelling, muscle weakness, increase of calcium, kidney stones, fatigue, drowsiness, joint and bone pain.
I agree with getting him to either the Cleveland Clinic or Mayo Clinic.
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Post by Susie_Homemaker on Nov 28, 2018 17:19:32 GMT
I'm just throwing this out there for you to look into because my oldest and dearest friend has it and until she was diagnosed I'd never heard of it. It's babesia and it is caused by ticks like lyme disease is. I can't tell you much about it but maybe you can research it to rule it out.
I hope you and your DH find some answers and get him some treatment!
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