Aa
Steriod infusion for newly dx pros a d cons
Hey gang I'm back Again Jamie newly d x. Is now went threw two episodes of slurred speech very bad. Now beter But every week she has these bouts of speech sounding jumbled up. So it's coming and going. Her left side leg still has a limp and isn't improveing. Her face is red like a sunburn and one day it was only on one side. Her Nero said she need a apt with a eye dr. Cause of her optic neuritis that she had active lesion on mri. Her Nero said and jamie said at first review of mri. She had 20 leison but only optic was enhanced or or flaring
I hope that makes sence.
Now she having a feeling like her insides a shaking or trimbling. For the last week. My question is
Do u think the iv infusions will help her stop these atacks. And her from having permanent disabilites as her limp hasnt improved.
I'm reading ms for dummies and my understanding is the iv infusion will help with the efects of ms but not slow it down. Also when they gave her predison for her bels palsey that started all this she had steriod syscious Laughing historically in witch we found out that could have been another disorder called ??? Got it wrote down but cant look at it cause I'm writing this So any advice you can give would be great
Copaxone is still in limbo. Who nos when she will get it. They took the co pay out of her bank account over a month ago. But no meds yet.
I hope that makes sence.
Now she having a feeling like her insides a shaking or trimbling. For the last week. My question is
Do u think the iv infusions will help her stop these atacks. And her from having permanent disabilites as her limp hasnt improved.
I'm reading ms for dummies and my understanding is the iv infusion will help with the efects of ms but not slow it down. Also when they gave her predison for her bels palsey that started all this she had steriod syscious Laughing historically in witch we found out that could have been another disorder called ??? Got it wrote down but cant look at it cause I'm writing this So any advice you can give would be great
Copaxone is still in limbo. Who nos when she will get it. They took the co pay out of her bank account over a month ago. But no meds yet.
Ohio ? Me too and I love a good pizza. I would guess the work environment and the active life with children has a bit to do with some of her problems. But the MS is at play, too. Does she has another neuro appointment scheduled soon? If not, I would encourage her to call and get one to discuss all of this.
If she is always freezing and wearing sweatshirts you definitely don't want to put a cooling vest on her. Each of us are different with our body temps.
Laura
If she is always freezing and wearing sweatshirts you definitely don't want to put a cooling vest on her. Each of us are different with our body temps.
Laura
PS. After reading my post i would say its sunburn cause she is outside. But in April when this all started was when her face started being red. All the time
Several days it was just on one side. In April here it was still cold. Plus shes not a outdoorsie kind of person
She was in bed for about 3 weeks I think she was off work for a month. Just wanted to make clear what I was trying to say. Thanks again
Cheryl
Several days it was just on one side. In April here it was still cold. Plus shes not a outdoorsie kind of person
She was in bed for about 3 weeks I think she was off work for a month. Just wanted to make clear what I was trying to say. Thanks again
Cheryl
Thanks JJ. It could be that because we have a family pizzeria witch is cool but the moving around can heat you up plus our hour are evening so going to work at 3 pm And the rush plus the heat outside he in ohio is 85 and above during the day could all contribute to her atacks plus she at the football field with her 9 yr old burning up on sat. I got her a canopy lawn chair and flat ice packets to put on her when shes out there Getting her a vest soon. Think ill make one for her
The only problem i see there is she always freezing
She wears sweetshiitts all the time. Dont no if she can stand the ice. Thanks again JJ !
The only problem i see there is she always freezing
She wears sweetshiitts all the time. Dont no if she can stand the ice. Thanks again JJ !
COMMUNITY LEADER
Hey, is it possible she's dealing with something that's raising her temperature eg UTI, allergy, infection etc?
It's just an idea going around my head because of her face being red, which isn't usually related to MS. If she does have something like an infection going on, that 'may' also explain the trembling feeling and be causing a pseudo but generally pseudo's don't require steroids. Pseudo's are basically not true relapses, though it can definitely feel like one because your sx's return or worsen until the eg infection is gone and your temp goes down.
When not relapsing, my ability to talk is one of my issues that's effected by my daily amount of physical activity, fatigue levels and how much talking i've done. This is one of my issues that starts worsening by the afternoon and if i don't rest/sleep enough, i'm definitely less functional though out the evening. Which is different than relapses because during those periods (sometimes lasting months), like everything else it's just constant 24/7 until the relapse starts lifting.
I'm not sure i'm explaining very well what i'm thinking, here's a personal example of when it's pseudo and not a relapse.......I changed my bedding and thought i'd managed it pretty well, although I was feeling the physical fatigue i typically expect earlier than my norm and i was more aware of feeling the tremor that runs through me, being unbalanced and falling, slurred/stuttered speech etc i was still happy i'd got through it with out help.
I was typically experiencing the signs i've pushed myself too far and not usually what i experience from the start, sleeping for 3 hours didn't help at all, i was actually worse than before i crashed. The next day i was still not back to my normal after sleeping 13 hours and i was also experiencing bladder accidents, i more often experience during the summer months.........the next morning I woke up with all the signs of a UTI and that was causing all my sx's to worsen (pseudo), and treating the infection is what's needed to improve the MS sx's and get back to normal again.
Basically what i'm trying to say is that unless she is genuinely relapsing, steroids will probably not be as beneficial, it's not always an MS attack and working out if there is possibly a pseudo going on, is imho always a good idea before assuming it's a relapse.
Food for thought.........JJ
It's just an idea going around my head because of her face being red, which isn't usually related to MS. If she does have something like an infection going on, that 'may' also explain the trembling feeling and be causing a pseudo but generally pseudo's don't require steroids. Pseudo's are basically not true relapses, though it can definitely feel like one because your sx's return or worsen until the eg infection is gone and your temp goes down.
When not relapsing, my ability to talk is one of my issues that's effected by my daily amount of physical activity, fatigue levels and how much talking i've done. This is one of my issues that starts worsening by the afternoon and if i don't rest/sleep enough, i'm definitely less functional though out the evening. Which is different than relapses because during those periods (sometimes lasting months), like everything else it's just constant 24/7 until the relapse starts lifting.
I'm not sure i'm explaining very well what i'm thinking, here's a personal example of when it's pseudo and not a relapse.......I changed my bedding and thought i'd managed it pretty well, although I was feeling the physical fatigue i typically expect earlier than my norm and i was more aware of feeling the tremor that runs through me, being unbalanced and falling, slurred/stuttered speech etc i was still happy i'd got through it with out help.
I was typically experiencing the signs i've pushed myself too far and not usually what i experience from the start, sleeping for 3 hours didn't help at all, i was actually worse than before i crashed. The next day i was still not back to my normal after sleeping 13 hours and i was also experiencing bladder accidents, i more often experience during the summer months.........the next morning I woke up with all the signs of a UTI and that was causing all my sx's to worsen (pseudo), and treating the infection is what's needed to improve the MS sx's and get back to normal again.
Basically what i'm trying to say is that unless she is genuinely relapsing, steroids will probably not be as beneficial, it's not always an MS attack and working out if there is possibly a pseudo going on, is imho always a good idea before assuming it's a relapse.
Food for thought.........JJ
Sorry I'm writing on my iPhone and I'm hitting the wrong botton. Well i was in shock but what hurt me the most is i couldn't buy her Copaxone for her to get her on the right track that was the biggie for me cause I'm the mom Nd moms always try to fix there baby's lol That took a while to get over . Now I'm on here trying to read post to see what to expect next. Or at least be aware of I did get the book m s for dummies thats explaining alot
Thanks for careing Alex
Cheryl
Thanks for careing Alex
Cheryl
Alex I'm doing fine i guess my friend ask me the same
I go to my friends for a bible reading once a week
The 4 of us decided to read it threw were going on six months now They are my suport group That i can vent to but it is very hard to watch my daughter go threw this noing i cant help her . I must admit that when she went back after the bels palsey to nuro to get the results ifr the mri i didnt go cause she seemed all beter except for the limp and i didnt believe it ! Then we returned after spinal tap and Nero asked if we had done are homework i was in shock! nd she said
I go to my friends for a bible reading once a week
The 4 of us decided to read it threw were going on six months now They are my suport group That i can vent to but it is very hard to watch my daughter go threw this noing i cant help her . I must admit that when she went back after the bels palsey to nuro to get the results ifr the mri i didnt go cause she seemed all beter except for the limp and i didnt believe it ! Then we returned after spinal tap and Nero asked if we had done are homework i was in shock! nd she said
I am glad to help. When you get diagnosed there is so much to learn. Unless you ask the doctors are so busy they do not always explain things. There is alot I don't about MS but I glad to answer in questions.
How are you doing as a mother with all this? It can't be easy. Parents want to help their children any way they casn. No one expects your grown child to be diagnosed with something like MS. It is important that you take of yourself as well.
My husband went to some Caregiver's workshops. He learned that he needed his own outlet which is long distance bicycling. It is physical which helps with stress and he can do it without me. He also needs someone besides me to talk to and vent. He learned that if he does not take care of himself first he can't take care of me. Be kind to yourself. You are a good mother.
Alex
How are you doing as a mother with all this? It can't be easy. Parents want to help their children any way they casn. No one expects your grown child to be diagnosed with something like MS. It is important that you take of yourself as well.
My husband went to some Caregiver's workshops. He learned that he needed his own outlet which is long distance bicycling. It is physical which helps with stress and he can do it without me. He also needs someone besides me to talk to and vent. He learned that if he does not take care of himself first he can't take care of me. Be kind to yourself. You are a good mother.
Alex
Thanks so much Alex , we will call her dr Monday
I read your post the other day and i think your one of the strongest person i know. With so many challenges and you care enough to give newness advice. Your an angel God bless you.
Cheryl
I read your post the other day and i think your one of the strongest person i know. With so many challenges and you care enough to give newness advice. Your an angel God bless you.
Cheryl
Here is the deal on steroids. Steroids do nothing to alter the progress of MS. They relieve inflammation. So if you have a lot of inflammation they can give you some relief. Some people they work for others they do not. Sometimes you get a rebound after taking them sometimes symptoms get better then worse. I think they are worth a try. I take them for my chemotherapy. I really hate the side effects but the side effects of chemotherapy are worse so once a month I take them both IV and orally.
Steroids can do weird things I had a friend with Lupus who ended up on the mental ward because they did not know she had Lupus and was on steroids. I talk a mile a minute. I tell my husband not to bring up controversial subjects the day I get steroids. We get into arguments when we normally would not. I do not sleep for days and have lots of energy.
Alex
It can take awhile to get set up on Copaxone. I think it took me six weeks or more. I would call her doctor to remind him or her.
Steroids can do weird things I had a friend with Lupus who ended up on the mental ward because they did not know she had Lupus and was on steroids. I talk a mile a minute. I tell my husband not to bring up controversial subjects the day I get steroids. We get into arguments when we normally would not. I do not sleep for days and have lots of energy.
Alex
It can take awhile to get set up on Copaxone. I think it took me six weeks or more. I would call her doctor to remind him or her.
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