BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Well, it’s time for me to unload again about my husband. This will be long. Sorry.
For anybody who remembers, last summer, he developed new symptoms ... collapsing suddenly two or three times a week, being unable to stand or walk (those were the days when I was dragging him around the house on an office chair, as it had wheels, before I got our little red wheelchair to save my back). When he was able to walk at all, he couldn’t lift his feet more than an inch from the ground, and couldn’t advance them more than an inch forward. Plus he’s had memory loss and some cognitive impairment for years, which I have not been able to get our PCP to address..
All his symptoms had started 25 years ago with seizures, and tingling and numbness from his rear end down to his feet. The tingling and pins & needles turned into pain and he has had intense chronic pain ever since (despite surgeries, etc., endless stuff). He never had a diagnosed.
When the new symptoms started last summer, I thought of MS, as that’s what the neuros had thought all those years ago, and some of his new symptoms seemed to fit.
But we saw a neuro a couple months ago, and he said at the end of that first visit “Parkinson’s with dementia.” So ... he’s on carbidopa for the Parkinson’s and aricept for the dementia. His gait and balance have improved considerably, although he is still weak. It will take a couple more months to see the effects of the aricept.
So, happy ending, right?
Wrong. Since well before those episodes last summer, he has been complaining that he doesn’t feel “right” ... he feels extremely sick. He’s nauseated, can’t eat more than a few bites (literally), and feels absolutely miserable, lousy, and wretched.
I didn’t know what to do about it. There was nothing specific to point to except nausea. I talked to the doctors, the case manager, etc., and they only suggested stronger nausea med.
Anyway two weeks ago, we had a follow up appt with a kidney doc. (another story), and it is the only time I have EVER seen a doctor act alarmed. Turns out Paul has lost another 12 pounds in the last two months (he’s 5’8” and usually runs about 140; now he’s 110 and truly looks skeletal). When the doctor came into the exam room, he stared at Paul, and said, “What’s happened? What is going on with you? You’re emaciated!”
He examined Paul and grilled me with questions, then said we had to see our PCP right away. I told him we had an appointment the next day, so he wrote out a note on his prescription pad for us to give her, telling her to get Paul to a gastro specialist stat ... he suspects stomach cancer.
I had never thought of that, although Paul’s brother died of stomach cancer, and (I’ve learned since) having a first-degree relative with stomach cancer is a big time risk factor. And unfortunately, his symptoms do fit stomach cancer.
So we saw the gastro guy, who said he didn’t think it was cancer ... he thought the nausea was from the meds Paul takes, which I have considered, but his feeling sick goes way beyond that. And Paul is taking really heavy-duty anti-nausea meds, the stuff they give chemo patients before they start a chemo treatment. And these meds do not cut down the nausea when Paul tries to eat. Getting down a half a banana is a major achievement. Anyway, the gastro guy said he will give Paul an upper GI exam “to give me peace of mind.”
So the test will be on November 20. I have determined not to let Paul lose any more weight. Since he can eat only two or three bites before the nausea overcomes him, I’m giving him 2 1/2 ounces of Ensure every hour. He’s spending about 23 hours a day in bed, as he is usually too sick and weak to get up, so I wake him up and have him drink a tiny glass of Ensure. This way, I manage to get 4 cans a day in him, which is 1,400 calories. Not enough to keep an active man going, but I’m hoping enough to keep him from losing more. I also make little meals for him, and if he can eat a half sandwich, or a little protein at dinner, that’s all to the good.
So ... more waiting. At least, we are getting instant OK’s from the insurance company for tests and consultations, and have great support from our insurance case manager and also my ALS rep, who knows how to work the medical system better than anyone I’ve ever met.
3 1/2 weeks more, and maybe we'll have an answer.
Thanks for letting me unload!
For anybody who remembers, last summer, he developed new symptoms ... collapsing suddenly two or three times a week, being unable to stand or walk (those were the days when I was dragging him around the house on an office chair, as it had wheels, before I got our little red wheelchair to save my back). When he was able to walk at all, he couldn’t lift his feet more than an inch from the ground, and couldn’t advance them more than an inch forward. Plus he’s had memory loss and some cognitive impairment for years, which I have not been able to get our PCP to address..
All his symptoms had started 25 years ago with seizures, and tingling and numbness from his rear end down to his feet. The tingling and pins & needles turned into pain and he has had intense chronic pain ever since (despite surgeries, etc., endless stuff). He never had a diagnosed.
When the new symptoms started last summer, I thought of MS, as that’s what the neuros had thought all those years ago, and some of his new symptoms seemed to fit.
But we saw a neuro a couple months ago, and he said at the end of that first visit “Parkinson’s with dementia.” So ... he’s on carbidopa for the Parkinson’s and aricept for the dementia. His gait and balance have improved considerably, although he is still weak. It will take a couple more months to see the effects of the aricept.
So, happy ending, right?
Wrong. Since well before those episodes last summer, he has been complaining that he doesn’t feel “right” ... he feels extremely sick. He’s nauseated, can’t eat more than a few bites (literally), and feels absolutely miserable, lousy, and wretched.
I didn’t know what to do about it. There was nothing specific to point to except nausea. I talked to the doctors, the case manager, etc., and they only suggested stronger nausea med.
Anyway two weeks ago, we had a follow up appt with a kidney doc. (another story), and it is the only time I have EVER seen a doctor act alarmed. Turns out Paul has lost another 12 pounds in the last two months (he’s 5’8” and usually runs about 140; now he’s 110 and truly looks skeletal). When the doctor came into the exam room, he stared at Paul, and said, “What’s happened? What is going on with you? You’re emaciated!”
He examined Paul and grilled me with questions, then said we had to see our PCP right away. I told him we had an appointment the next day, so he wrote out a note on his prescription pad for us to give her, telling her to get Paul to a gastro specialist stat ... he suspects stomach cancer.
I had never thought of that, although Paul’s brother died of stomach cancer, and (I’ve learned since) having a first-degree relative with stomach cancer is a big time risk factor. And unfortunately, his symptoms do fit stomach cancer.
So we saw the gastro guy, who said he didn’t think it was cancer ... he thought the nausea was from the meds Paul takes, which I have considered, but his feeling sick goes way beyond that. And Paul is taking really heavy-duty anti-nausea meds, the stuff they give chemo patients before they start a chemo treatment. And these meds do not cut down the nausea when Paul tries to eat. Getting down a half a banana is a major achievement. Anyway, the gastro guy said he will give Paul an upper GI exam “to give me peace of mind.”
So the test will be on November 20. I have determined not to let Paul lose any more weight. Since he can eat only two or three bites before the nausea overcomes him, I’m giving him 2 1/2 ounces of Ensure every hour. He’s spending about 23 hours a day in bed, as he is usually too sick and weak to get up, so I wake him up and have him drink a tiny glass of Ensure. This way, I manage to get 4 cans a day in him, which is 1,400 calories. Not enough to keep an active man going, but I’m hoping enough to keep him from losing more. I also make little meals for him, and if he can eat a half sandwich, or a little protein at dinner, that’s all to the good.
So ... more waiting. At least, we are getting instant OK’s from the insurance company for tests and consultations, and have great support from our insurance case manager and also my ALS rep, who knows how to work the medical system better than anyone I’ve ever met.
3 1/2 weeks more, and maybe we'll have an answer.
Thanks for letting me unload!
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