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Old 05-19-2008, 11:40 AM   #31
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Fasting for blood tests is usually only needed for glucose and cholesterol, so no fasting doesn't mean they didn't test for things other than cancer. They just didn't test for diabetes

I would at least ask the doc why they only did a head MRI. I'm guessing all his symptoms point more to a brain problem, but it's worth asking just to make sure they didn't skip a test for insurance reasons (it's happened before...)

HD was not always recognized for what it is in past generations. Also, some patients have HD with no family history. Not that I'm trying to spread panic, but you've obviously already thought about it. Have him tested, hopefully for peace of mind. If the test is negative, you can breathe easier. If not, there are clinical trials you can enroll in.

You know, I can totally understand when you start rating diseases on a scale of "which is the lesser evil to have." I think not knowing, and imagining worst-case scenarios, is the worst place to be in. I hope this gets resolved soon. How are your kids doing through all of this? I imagine it's tough being scared and trying to function normally as parents...You are all constantly in my thoughts.
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Old 05-19-2008, 12:51 PM   #32
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Thanks Dee! My youngest is probably too young to realize - although she does make the grunting sound DH does when he seizes - we're all able to laugh at her mimicing my husband. DS has PDD-NOS, so I'm not sure how much he's picked up on what's happening and we don't want to sit down and tt them until we know something. I think he does pick up on the stress though because he's had some recent set-backs in behavior at school lately.
who knows though. I think the Dr. only had the head sched., but we did run into some resistence to the MRI, the ins. co. would only approve it after talking directly to the Dr..

I just really appreciate the support. Thank you!!!
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Old 05-20-2008, 07:56 AM   #33
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New Symptom!

DH just told me last night that he has something new happening.

He said it feels like there's a buzzing inside his thigh on the leg that always gives out.

He said it feels like there's a cell phone inside his thigh vibrating? It's off and on and has been going on since the weekend. Does this new symptom shed any light to anyone on what this might be?
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Old 05-20-2008, 12:22 PM   #34
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Can he see his muscles twitching when it's going on? This could be fasciculation (muscle twitching). It is a symptom of ALS, MS, or nothing at all, depending. It is most commonly associated with ALS, though few people know there is a syndrome called Benign Fasciculation Syndrome (BFS). It's annoying, but harmless. An EMG is one test to show if the symptom is part of BFS or something else. Make sure your DH tells his doc about this. Stress and anxiety can worsen BFS, BTW. And surely your DH is not stressed at all at the moment

I'm sorry your DS is having stress-related setbacks. Kids really do pick up on stress, and sometimes bad behavior is the only way they can express their own anxiety -- my DS was almost impossible in the months before my ex and I separated. The tension at home was so bad and he just...let us know it was getting to him. In the only way he could.

PM me if you need to vent off list. I'm sending more hugs and good thoughts your way...
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Old 05-20-2008, 07:53 PM   #35
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Thanks dee, I might take you up on that PM later. He called the Dr. today to let them know. I'll keep you posted. Again, it means so much that you're helping me right now. Thank you!!!
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Old 05-20-2008, 09:58 PM   #36
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I hope you find out what this is Breezy, the not-knowing is so difficult.. Keep us in the loop..

Thanks to all who are trying to help here..
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Old 05-21-2008, 08:22 AM   #37
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Keep your chin up, Breezy. We're all thinking of you and you family!
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Old 05-22-2008, 08:17 AM   #38
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The choking is very worrisome. That symptom needs to be looked at more closely. A swallow study (video fluoroscopy) should be done. It takes about ten minutes, no pain. Simply swallowing different textured foods mixed with dye while the radiologist takes video x-rays. Choking can lead to aspiration even in small amounts which can lead to infection. I would insist on this being looked at.
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Old 05-27-2008, 10:32 PM   #39
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Well, DH is going for the EMG tomorrow (wednesday). I'm going with him, so I'll make sure he mentions the leg twitches too. Does anyone know how soon the results come in? If they can't figure out what's wrong after this, I think I'll scream. I mean - what will they do next for tests? Bloodwork/neg, MRI/neg, EEG/neg.. Ugh. DH is frustrated too, and I can see that he's really sick of all the seizures.

The choking thing is on my top list of priorities for the doctor tomorrow. He's not just choking on saliva anymore. Now he chokes on food all the time. Ugh.

I'll keep y'all posted...


Ugh.
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Old 05-27-2008, 11:02 PM   #40
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Breezy, if no one does or says anything definitive about the choking tomorrow you need to physically grab someone and DEMAND answers. Or else he might die of aspiration pneumonia before they take it seriously. This symptom should have set off red alerts a LONG time ago, IMHO (I think I said that before).

I can understand your frustration! Agh!

Good luck tomorrow.
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Old 05-28-2008, 05:05 AM   #41
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I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??

Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery.. I know I equate a lot to this, but if we did not find this ourselves, my DH would not be here right now. I take each day as a blessing..

Keep pushing Breezy, you are doing a great job and we are behind you 100%.

And do let us know how today went.. please.
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Old 05-28-2008, 07:29 AM   #42
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Quote:
Originally Posted by dee47 View Post
Breezy, if no one does or says anything definitive about the choking tomorrow you need to physically grab someone and DEMAND answers. Or else he might die of aspiration pneumonia before they take it seriously. This symptom should have set off red alerts a LONG time ago, IMHO (I think I said that before).

I can understand your frustration! Agh!

Good luck tomorrow.
Thanks dee - I will make them listen - I'm not shy that way .

Quote:
Originally Posted by Mackey Mouse View Post
I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??

Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery.. I know I equate a lot to this, but if we did not find this ourselves, my DH would not be here right now. I take each day as a blessing..

Keep pushing Breezy, you are doing a great job and we are behind you 100%.

And do let us know how today went.. please.
Thanks Mackey Mouse, you're an inspiration.

As always...I'll let y'all know. DH did say something last night that brought me to my knees...he said he doesn't want to go - as in die. I was floored. I mean I know that's an end-result possibility, but to hear him say it made it seem real for the first time.
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Old 05-28-2008, 07:50 AM   #43
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Quote:
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DH did say something last night that brought me to my knees...he said he doesn't want to go - as in die. I was floored. I mean I know that's an end-result possibility, but to hear him say it made it seem real for the first time.


You're all in my thoughts.

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Old 05-28-2008, 07:56 AM   #44
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Quote:
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I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??
Nope. Not just you. I really have the same urges. It makes me mad that it's taken this long, with his symptoms getting worse fairly fast, to do tests that should have been done a year ago. AGH!

Quote:
Originally Posted by Mackey Mouse View Post
Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery..
Same story with inflammatory breast cancer. I'm doing an article right now, and the more I read (and write) about it, the angrier I get.

BTW, how many women here have ever heard of inflammatory breast cancer? This article is turning me into a crusader.

But I won't hijack this thread. I'm off my soapbox now
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Old 05-28-2008, 08:12 AM   #45
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Dee, you've probably heard about this already, but there's some up and coming technology (awaiting FDA approval - don't get me started...) that involves imaging diagnostic techniques that will eventually (I hope) be used in conjunction with mammography. They can scan the breast and detect masses that can be missed by a mammogram. And, I think, the imaging technique can even tell to a high degree the probability of whether the mass is cancerous or not. Very interesting stuff...but of course it's being bogged down awaiting FDA approval. It is currently being used in many other countries though. Just an FYI I thought might interest you after reading your post.
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