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cmw&tdm
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MS - anyone have a parent with this ...
cmw&tdm
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or in some way knowledgeable about it? My mom has been experiencing some symptoms and thinks she has had this since about age 30 but it's been in remission for long periods of time. She has an MRI coming up and they referred her to a neuro. Are the meds for this disease pretty good these days? I'm stressed out about this.
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Re: MS - anyone have a parent with this ...
Hi,
My mom has MS. Was diagnosed about 20 years ago. She recently has been diagnosed with cancer and is going through chemo now, so she's off the MS meds. However, she was doing weekly shot of Avonex and it has been able to hold off the MS issues. She was still living life normally and doing well. Some pain/problems here and there and slower but still doing well. It's scary but hopefully your mom's can be controlled with medication as well. Let me know if you have any other questions.
In my mom's experience her meds have seemed to keep the MS from progressing too much. She still works (she's a postal carrier) and still manages to take care of her house and animals, though she does get very tired and that makes her grumpy alot.
She was diagnosed about 8 years ago and was on IM injections up until a few months ago. When she was first diagnosed they put her on a daily injection and she ended up having a reaction to it that didn't show right away. I believe it took a few months. Her joints locked up on her and it lasted for a few minutes - so they switched her to a weekly injection.
She had been on the weekly injection, without issues, ever since. Her doctor ended up leaving and the new doctor decided to do a recheck and see if she had progressed a few months ago. She had a few more lesions in her brain but all in all she has done pretty well.
They decided to try her on an oral med instead of going back to the injection - i'm not too familiar with it since she just started a few weeks ago. So far, she likes it. She has to watch because it lowers blood pressure and can make her more prone to infections (like the flu or colds). She has already noticed the decreased blood pressure.
She told me with her weekly injection she always felt like she had been hit by a train the day after she had to take it (which is similar to what Mel72 said about her husband). Luckily this oral med hasn't given her that type of side effect.
So far the only physical symptoms she has ever noticed is she lost feeling on the tips of her fingers. She can still do everything but little things like threading a needle or putting earrings in gets frustrating. She also has a small limp on one leg but it's not noticeable unless you are really watching her.
When they first took her off the injection in Jan she started feeling like her ankle was broke. It was hard for her to walk but she managed to keep on with daily activities. I was scared she would progress because it took them forever to get this new med approved and started (from late Jan up to a few weeks ago). She had to be monitored in the hospital the first 6 hours because it can have major side effects. I'm just hoping it will help keep symptoms from progressing.
DH was diagnosed with MS in 2003 at age 33. He had symptoms of it in 2000, but it was following a car accident and he was mis-diagnosed. When he has a relapse, he has numbness in his feet and up his shins. He also has some short term memory loss that is very frustrating for him. He gets tired a lot and sometimes battles with depression.
He is on Co.paxone shots daily. He started on that when he was first diagnosed, but it's crazy expensive and our insurance doesn't fully cover the costs. He tried two other medications, but had more relapses with those. We finally got back on co.paxone through an assistance program and he is back to doing pretty well. High stress situations set off relapses, so we try to avoid stress whenever possible. Small relapses usually go away on their own after a week or two, major ones require steroid treatments, which means he's a bit of a zombie for a few weeks. When DS was born, he had a major relapse with the lack of sleep, stress of having a newborn, etc. I'm really hoping that we can have enough help when our twins are born that he can get some rest and we can avoid another major episode.
It's all about the meds. There are 4 main ones that i know of. If your mom doesn't do as well on one of them, switch to a different one. They work differently and people respond differently to one over another. Good luck! It's a stressful process, but after a while it just becomes the new normal.
My mom was diagnosed 12 years ago. She got optic neuritis. She had several other symptoms throughout the years, that looking back, were probably misdiagnosed (not uncommon with MS).
She was able to go without meds for two years. She started betaseron after she had an exacerabtion. She had a pretty nasty exacerbation that left her with numbness and tingling up to her hips. She recently started a fairly new drug to help with her gait and I've noticed marked improvement.
As far as living with MS, she's kept her life as normal as possible. She still works way too many hours at her damanding job. She still does all of her own housework and cares for her two (big) dogs. She still does most of her yardwork. She actually has a harder time with the cold than heat, so she finally decided to hire someone to do snow removal this past winter. She walks with a cane from time to time, but that has more to do with her bad knees.