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What is typical protocol after diagnosis?
I think that I am going to soon become a very active member here, so let me introduce myself:
My name is Katie, and I am 35 years old. I live outside of Richmond, VA with my wonderful husband of 10 years, and our 3 children, ages 6, 4, and 2. I am a physical therapist. Don't get too excited, I nothing about working with MS patients! I sheepishly admit that whenever I would get a patient with MS on my schedule, I would think "oh crap, I don't know what to do with them, just don't make them hot." MS has always been a diagnosis that scared me, and now here I am. I have not been officially diagnosed, but that is coming on Tuesday. I have active ON (diagnosed by opthamologist) and I had an MRI in 11/2009 secondary to migraines that showed 7 T2 hyperintensities in my PV white matter. I see the neuro on Tuesday at which time I'm pretty sure he'll do a repeat MRI and confirm the diagnosis.
So ... that said, let me get to my question: can anyone tell me what is standard protocol? I have read a lot about people getting IV steroid treatments when they are in relapse. Will I be hospitalized for this? I will do whatever, but I'm trying to plan ahead. I am starting a new job on Thursday, and I would rather not have to call and try to explain this one. If I do have to be admitted would waiting until Friday morning make that much of a difference? Don't get me wrong, I'm definitely ready to begin treatment and lose the pain and blurred vision, but we are a two income household, and I need this job.
Thanks!
Katie
My name is Katie, and I am 35 years old. I live outside of Richmond, VA with my wonderful husband of 10 years, and our 3 children, ages 6, 4, and 2. I am a physical therapist. Don't get too excited, I nothing about working with MS patients! I sheepishly admit that whenever I would get a patient with MS on my schedule, I would think "oh crap, I don't know what to do with them, just don't make them hot." MS has always been a diagnosis that scared me, and now here I am. I have not been officially diagnosed, but that is coming on Tuesday. I have active ON (diagnosed by opthamologist) and I had an MRI in 11/2009 secondary to migraines that showed 7 T2 hyperintensities in my PV white matter. I see the neuro on Tuesday at which time I'm pretty sure he'll do a repeat MRI and confirm the diagnosis.
So ... that said, let me get to my question: can anyone tell me what is standard protocol? I have read a lot about people getting IV steroid treatments when they are in relapse. Will I be hospitalized for this? I will do whatever, but I'm trying to plan ahead. I am starting a new job on Thursday, and I would rather not have to call and try to explain this one. If I do have to be admitted would waiting until Friday morning make that much of a difference? Don't get me wrong, I'm definitely ready to begin treatment and lose the pain and blurred vision, but we are a two income household, and I need this job.
Thanks!
Katie
Hi Katie,
I'm interested to learn what your neurologists says at your appt.
I'm still waiting for my official diagnosis.
I presented with symptoms left side weakness, spasticity, etc. starting Dec 08, then had optic neuritis in my left eye in Feb 09, and optic neuritis in my right eye in Aug 09. With many different symptoms in between.
I have 6 brain lesions - 4 periventricular, 1 infratentorial, & the other I'm not sure where.
Then I also have 3 T1 hypointense lesions (blackholes), 1 lesion between C4-C6, and another between T9-T10.
Even with all of that, I still don't have a definitive diagnosis of MS.
They did order IV Solumedrol for me in May of 09. They just left the port in my arm, and I would go in to the chemo / infusion center at the hospital once a day for 3 days - about 2 hrs each day. They had to cut it short because I had a hypersensitivity to it.
But not everyone has the same reaction. I don't think I'd do it again. (And not sure if they would let me anyway}.
I do hope that you have an awesome neurologist and they are able to help you and diagnose you - if you really have MS. Good Luck!!
You'll have to check back in with us.....
-Kelly
I'm interested to learn what your neurologists says at your appt.
I'm still waiting for my official diagnosis.
I presented with symptoms left side weakness, spasticity, etc. starting Dec 08, then had optic neuritis in my left eye in Feb 09, and optic neuritis in my right eye in Aug 09. With many different symptoms in between.
I have 6 brain lesions - 4 periventricular, 1 infratentorial, & the other I'm not sure where.
Then I also have 3 T1 hypointense lesions (blackholes), 1 lesion between C4-C6, and another between T9-T10.
Even with all of that, I still don't have a definitive diagnosis of MS.
They did order IV Solumedrol for me in May of 09. They just left the port in my arm, and I would go in to the chemo / infusion center at the hospital once a day for 3 days - about 2 hrs each day. They had to cut it short because I had a hypersensitivity to it.
But not everyone has the same reaction. I don't think I'd do it again. (And not sure if they would let me anyway}.
I do hope that you have an awesome neurologist and they are able to help you and diagnose you - if you really have MS. Good Luck!!
You'll have to check back in with us.....
-Kelly
Hello everyone! Thanks so much for your informative answers. I know that the steroids don't "cure" anything, but I have read that there are studies showing that people who do the IV route at initial diagnosis are significantly less likely to have another relapse within the next 5 years. But, on the other hand, I have also read that after 3 years it is a wash, IVs, oral meds, or nothing.
I think waiting for the dx, and not knowing what my life will be like is the worst part of this. I worry about so many things. Will I be able to be an active participant in my children's lives? Will I be an adequate spouse, or will my husband get fed up and leave me? Are we heading for financial ruin? So, so much to worry about. Thanks again for all of your answers, and I'll keep you posted on what happens on Tuesday.
I think waiting for the dx, and not knowing what my life will be like is the worst part of this. I worry about so many things. Will I be able to be an active participant in my children's lives? Will I be an adequate spouse, or will my husband get fed up and leave me? Are we heading for financial ruin? So, so much to worry about. Thanks again for all of your answers, and I'll keep you posted on what happens on Tuesday.
Hi, and another welcome to the forum!
I cannot add much to the comments above. Whether to use steroids seems to be up to the neuro and what their views of using steroids are. Steroids do not affect the overall outcome of the disease, but may quiet down symptoms of a relapse more quickly.
Some good studies are showing that high dose oral prednisone may be as good as the IV route. the main concern there is the ability of the stomach to tolerate such high doses. Mary is absolutely correct when she comments that oral steroids are NOT recommended for the treatment of a relapse of Optic Neuritis. A long study, (about 15 years) called the Optic Neuritis Treatment Trial, found that use of oral steroids appeared to put the patient at risk for more episodes of ON. Neither IV steroids, oral steroids nor no treatment at all had any effect on the ultimate outcome - loss of vision, so the treatment is for symptomatic use only.
You are welcome to join us whether or not your diagnosis happens this week.
Pull up a chair and ask questions.
Quix, MD
I cannot add much to the comments above. Whether to use steroids seems to be up to the neuro and what their views of using steroids are. Steroids do not affect the overall outcome of the disease, but may quiet down symptoms of a relapse more quickly.
Some good studies are showing that high dose oral prednisone may be as good as the IV route. the main concern there is the ability of the stomach to tolerate such high doses. Mary is absolutely correct when she comments that oral steroids are NOT recommended for the treatment of a relapse of Optic Neuritis. A long study, (about 15 years) called the Optic Neuritis Treatment Trial, found that use of oral steroids appeared to put the patient at risk for more episodes of ON. Neither IV steroids, oral steroids nor no treatment at all had any effect on the ultimate outcome - loss of vision, so the treatment is for symptomatic use only.
You are welcome to join us whether or not your diagnosis happens this week.
Pull up a chair and ask questions.
Quix, MD
Welcome to our place Katie. Feel free to stick around whatever Tuesday's appointment brings your way.
I'm not sure if you are referring to the ON as your flare or if you are having other symptoms as well. Steroids can be used in pill or IV form for most flares. But ON treatment requires the IV route to be effective in speeding up recovery. At least that is what I've usually read. We have had a person or two report that they were given steroid pills to treat ON.
I've never taken a course of IV steroids but other people here report some side effects like being wired, unable to sleep, having a bad taste in the mouth, and stomach pain (even with the IV route). If you have decent veins they could just start a new site each day. It might be a little tough with starting a new job but you will have some options. With MS and steroids it's a matter of potentially speeding up how fast you improve rather than making the difference in IF you will improve....or not.
There isn't an automatic protocol concerning MS treatment, or even the diagnosis for that matter. Some doctors hold back and others throw everything they can your way. Please let us know how things go for you.
And again, welcome. It's good to have you here. I bet we can get you nice and comfy working with MS patients.
Mary
I'm not sure if you are referring to the ON as your flare or if you are having other symptoms as well. Steroids can be used in pill or IV form for most flares. But ON treatment requires the IV route to be effective in speeding up recovery. At least that is what I've usually read. We have had a person or two report that they were given steroid pills to treat ON.
I've never taken a course of IV steroids but other people here report some side effects like being wired, unable to sleep, having a bad taste in the mouth, and stomach pain (even with the IV route). If you have decent veins they could just start a new site each day. It might be a little tough with starting a new job but you will have some options. With MS and steroids it's a matter of potentially speeding up how fast you improve rather than making the difference in IF you will improve....or not.
There isn't an automatic protocol concerning MS treatment, or even the diagnosis for that matter. Some doctors hold back and others throw everything they can your way. Please let us know how things go for you.
And again, welcome. It's good to have you here. I bet we can get you nice and comfy working with MS patients.
Mary
Hello and welcome to the best MS home on the net. The support here is beyond any I have found anywhere else.
When I went to my "official diagnosis" appointment, the neuro did not think there was a need to treat a flare as my flare seemed to be over by the time I got to the appt. He did prescribe a DMD (disease modifying drug) and made sure I have meds that made my symptoms more comfortable. I was told to follow up in 3 months.
I actually did not like him much and switched neuros for that 3 month appt. The new neuro recognized I was in a flare again and prescribe 5 days of solumedrol.
As far as solumedrol treatments, I have had 4 in the last 15 months. I do mine at home for one hour a day for 5 days. A nurse comes to my house to set up my IV and check it daily. I live 45 miles from the treatment center so that is why I get a home nurse. I do keep the IV in my arm during the 5 days with a change on the 3rd day. It is not hospitalization, but it is recommended not to go out to places where you can get infection through the IV so I did not work during the treatments.
If you are in a flare, the neuro may decide you need treatment with solumed. If so, the amount of time you wait is between you and the neuro. I am currently in a flare and my MS specialist is letting it ride with no steriods. A flare will go away without treatment, it just depends on how bad my symptoms are becoming before I finally decide it is time to try steroids.
The steroids are simply given in the hopes of stopping the immune system form attacking the CNS (ending the flare) sooner than it would have ended on its own. I hope that makes sense.
I do hope you have a very productive appt and get started fighting this disease right away.
D
When I went to my "official diagnosis" appointment, the neuro did not think there was a need to treat a flare as my flare seemed to be over by the time I got to the appt. He did prescribe a DMD (disease modifying drug) and made sure I have meds that made my symptoms more comfortable. I was told to follow up in 3 months.
I actually did not like him much and switched neuros for that 3 month appt. The new neuro recognized I was in a flare again and prescribe 5 days of solumedrol.
As far as solumedrol treatments, I have had 4 in the last 15 months. I do mine at home for one hour a day for 5 days. A nurse comes to my house to set up my IV and check it daily. I live 45 miles from the treatment center so that is why I get a home nurse. I do keep the IV in my arm during the 5 days with a change on the 3rd day. It is not hospitalization, but it is recommended not to go out to places where you can get infection through the IV so I did not work during the treatments.
If you are in a flare, the neuro may decide you need treatment with solumed. If so, the amount of time you wait is between you and the neuro. I am currently in a flare and my MS specialist is letting it ride with no steriods. A flare will go away without treatment, it just depends on how bad my symptoms are becoming before I finally decide it is time to try steroids.
The steroids are simply given in the hopes of stopping the immune system form attacking the CNS (ending the flare) sooner than it would have ended on its own. I hope that makes sense.
I do hope you have a very productive appt and get started fighting this disease right away.
D
Hi and welcome. I'm sorry to hear you are probably going to join us on this side. Its not a fun club to belong to, but remember we are in this together.
As for treating ON with IV steroids - it is not always given. The ON is going to resolve to the point it will get to, whether you do treatment or not. It is just the Solumedrol will get you to that point sooner.
I had Steroids last month - the first day was 1 gram solumedrol by IV - it took about 90 minutes in the infusion center at the neuro's clinic. Then the next two days I finished up with oral - it was compounded at a local pharmacy so I only had to take one capsule instead of 25 prednisone tablets each day. All of this was done outside of the hospital.
Hospitalization is used in extreme cases and isn't a standard for everyone. Many people do the infusions at home - with the help of a visiting nurse.
The use of steroids is to ease the inflammation, but does not cure the MS or the problem that has cause the inflammation. I hope that makes sense - so much of this disease and the treatments for it and the symptoms are confusing.
Welcome again - I hope we will see you around!
Lulu
As for treating ON with IV steroids - it is not always given. The ON is going to resolve to the point it will get to, whether you do treatment or not. It is just the Solumedrol will get you to that point sooner.
I had Steroids last month - the first day was 1 gram solumedrol by IV - it took about 90 minutes in the infusion center at the neuro's clinic. Then the next two days I finished up with oral - it was compounded at a local pharmacy so I only had to take one capsule instead of 25 prednisone tablets each day. All of this was done outside of the hospital.
Hospitalization is used in extreme cases and isn't a standard for everyone. Many people do the infusions at home - with the help of a visiting nurse.
The use of steroids is to ease the inflammation, but does not cure the MS or the problem that has cause the inflammation. I hope that makes sense - so much of this disease and the treatments for it and the symptoms are confusing.
Welcome again - I hope we will see you around!
Lulu
I've only had one relapse, a year ago which resulted in my MS diagnosis, but I was hospitalized for the 5-day IV Solumedrol. It was 4 x per day -- every 6 hrs.
The reason for the hospital stay was the need for round-the-clock infusions (no infusion center available at all hours), PLUS Solumedrol can raise blood sugar to dangerous levels, so I had blood sugar tested every 4 or 6 hrs -- got up to 145 once, and 130 twice (I'm not diabetic). I was given insulin shots then.
I was lucky -- no bad side effects from the meds. I didn't do the oral steroid taper -- current thinking is that it's not required, and I did fine. But I do have wonky veins, and had the IV replaced 3 times.
Maybe you can do the infusions outside the hospital -- I think some of the forum members have done that.
The reason for the hospital stay was the need for round-the-clock infusions (no infusion center available at all hours), PLUS Solumedrol can raise blood sugar to dangerous levels, so I had blood sugar tested every 4 or 6 hrs -- got up to 145 once, and 130 twice (I'm not diabetic). I was given insulin shots then.
I was lucky -- no bad side effects from the meds. I didn't do the oral steroid taper -- current thinking is that it's not required, and I did fine. But I do have wonky veins, and had the IV replaced 3 times.
Maybe you can do the infusions outside the hospital -- I think some of the forum members have done that.
Hi Katie! Welcome to our forum and community. We have the best supportibe and educational forum for MS.
MS is a scary disease so your feelings are normal. I was always afraid of it. When Annetted Funicello anounced her illness I was horrified. But now you will learn that there are great medications. People haave been known to go into remission for years.
Hopefully that will happen for you. You are so young
welcome!!
Red
MS is a scary disease so your feelings are normal. I was always afraid of it. When Annetted Funicello anounced her illness I was horrified. But now you will learn that there are great medications. People haave been known to go into remission for years.
Hopefully that will happen for you. You are so young
welcome!!
Red
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