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Old 07-29-2013, 09:52 PM #1
Mariel Mariel is offline
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Don't know how to respond to this, but feel I should respond in order to show support.
Constipation is a common situation for people with MS and Porphyria (I have both, but no longer have constipation because I take enough magnesium to end that. I take the mag for other problems (spasticity, jerking, neuropathy).)
My search for a dx was very very very long, and after I got a DX, I had to continue searching for remedies that worked for some of my problems. I never got complete "working" of all problems, but I did get significant help from a wide wide wide list of sources. My point is that I had to keep looking.
I can't take the drugs for neuropathy. They give me frightening side effects. I take some supplements which help but don't solve the whole thing: magnesium, calcium D3,
B1, E Complex are the most helpful. A neurologist a quarter century ago told me to look for magnesium that didn't cause too much constipation, and I have tried six or seven types and continue to experiment, but I must take over 800 mg a day...possibly the type of magnesium matters in how much I take.

I am not saying you are impatient. February is a LONG time to wait, and you don't even know if you will get help in February. So it's a nasty business we are in with MS, and with other neuro diseases.
If you feel like trying supplements to help your neuropathy, I say that this might make the wait for February less horrible.
I am very sympathetic.
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Old 07-29-2013, 11:27 PM #2
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Some doctors have a cancellation list. You make an appointment but would like to get in earlier so you ask them to call you if a cancellation happens and an earlier time opens up.
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Old 07-30-2013, 08:15 AM #3
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Quote:
Originally Posted by doydie View Post
Some doctors have a cancellation list. You make an appointment but would like to get in earlier so you ask them to call you if a cancellation happens and an earlier time opens up.
That's true. I should do that. Thanks!!
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Old 07-30-2013, 08:17 AM #4
Midori2013 Midori2013 is offline
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Quote:
Originally Posted by Mariel View Post
Don't know how to respond to this, but feel I should respond in order to show support.
Constipation is a common situation for people with MS and Porphyria (I have both, but no longer have constipation because I take enough magnesium to end that. I take the mag for other problems (spasticity, jerking, neuropathy).)
My search for a dx was very very very long, and after I got a DX, I had to continue searching for remedies that worked for some of my problems. I never got complete "working" of all problems, but I did get significant help from a wide wide wide list of sources. My point is that I had to keep looking.
I can't take the drugs for neuropathy. They give me frightening side effects. I take some supplements which help but don't solve the whole thing: magnesium, calcium D3,
B1, E Complex are the most helpful. A neurologist a quarter century ago told me to look for magnesium that didn't cause too much constipation, and I have tried six or seven types and continue to experiment, but I must take over 800 mg a day...possibly the type of magnesium matters in how much I take.

I am not saying you are impatient. February is a LONG time to wait, and you don't even know if you will get help in February. So it's a nasty business we are in with MS, and with other neuro diseases.
If you feel like trying supplements to help your neuropathy, I say that this might make the wait for February less horrible.
I am very sympathetic.

Thank you so much for your help and kind words. I will definitely look into magnesium.
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Old 07-30-2013, 09:15 AM #5
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Sorry your appointment was really a disappointment, Midori. Here I was hoping you'd get the MRIs but she changed her mind, huh? Or did I misunderstand your earlier post? February?! That's just wrong!
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Old 07-30-2013, 10:55 AM #6
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That's horrible. Feb?!?!?! Can you travel and see somebody sooner? I don't know where you're at, but when I was calling around the other week, trying to find somebody sooner than my Sept appt, they all seemed to have about the same timing, a couple months from now.

I was really hoping I'd get some more tests done before I see the bigger neuro, hoping my PCP would order then, but no. He said they need to be done at the hospital I'm going to anyway.

Yes, I started with Neuropathy. Probably had some other symptoms before that, but neuropathy was the first thing that took me to the doc. I'm not dx'ed yet, but I've just gone downhill since the neuropathy started a year ago.
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Old 07-30-2013, 02:06 PM #7
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Quote:
Originally Posted by chaos View Post
That's horrible. Feb?!?!?! Can you travel and see somebody sooner? I don't know where you're at, but when I was calling around the other week, trying to find somebody sooner than my Sept appt, they all seemed to have about the same timing, a couple months from now.

I was really hoping I'd get some more tests done before I see the bigger neuro, hoping my PCP would order then, but no. He said they need to be done at the hospital I'm going to anyway.

Yes, I started with Neuropathy. Probably had some other symptoms before that, but neuropathy was the first thing that took me to the doc. I'm not dx'ed yet, but I've just gone downhill since the neuropathy started a year ago.
The wait around here really is insane. Any short wait ones are like the last lady I went to...
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Old 07-30-2013, 02:05 PM #8
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Quote:
Originally Posted by Sparky10 View Post
Sorry your appointment was really a disappointment, Midori. Here I was hoping you'd get the MRIs but she changed her mind, huh? Or did I misunderstand your earlier post? February?! That's just wrong!
I was able to get a copy of them from the center that did them at. She literally didn't even look at them though when I was there. She was the worst doctors. As soon as the appointment ended she was in her cell phone checking her text messages.
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