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What to expect from MS?
Thank you for this forum. It looks so active and informative.
I am 56 years old and I have been a nurse for 36 years. In October of 2003 I had optic neuritis in my right eye. MRIs and an LP was done. No diagnosis was given at that time. After several doses of IV Solumedrol and a few months, my vision returned and I thought that was the end of it.
Through the years I have had intermittent episodes of numbness, tingling, muscle cramps/spasms, brain lapses as I call them, hip pain, shoulder pain, severe fatigue and other symptoms. I attributed these symptoms to aging and stress.
Ten years later in November, 2013 I got optic neuritis in my left eye. The current MRI of the brain and cervical spine shows hyperintensities in the white matter, brain stem, cerebellum, and cervical spine. It also shows demyelinization and brain atrophy. My neurologist was very reluctant to call it MS. He ordered additional tests for Sojoren's and other chemistries.
On my visit of Friday 2/21 he said it is MS and offered suggestions for treatment. I have to go this week for additional lab to rule out Devic's disease.
I must admit that I am frightened about the future. My husband and son have disabilities and I am the sole support and major caregiver of the family.
Over the years I have taken care of several MS patients that were very debilitated, and much younger than I was.
Can I go this long with only minimal symptoms and then progress more rapidly?
I am taking each day as a gift and not dwelling on it so much, but I am concerned.
Thank you all for being here!
I am 56 years old and I have been a nurse for 36 years. In October of 2003 I had optic neuritis in my right eye. MRIs and an LP was done. No diagnosis was given at that time. After several doses of IV Solumedrol and a few months, my vision returned and I thought that was the end of it.
Through the years I have had intermittent episodes of numbness, tingling, muscle cramps/spasms, brain lapses as I call them, hip pain, shoulder pain, severe fatigue and other symptoms. I attributed these symptoms to aging and stress.
Ten years later in November, 2013 I got optic neuritis in my left eye. The current MRI of the brain and cervical spine shows hyperintensities in the white matter, brain stem, cerebellum, and cervical spine. It also shows demyelinization and brain atrophy. My neurologist was very reluctant to call it MS. He ordered additional tests for Sojoren's and other chemistries.
On my visit of Friday 2/21 he said it is MS and offered suggestions for treatment. I have to go this week for additional lab to rule out Devic's disease.
I must admit that I am frightened about the future. My husband and son have disabilities and I am the sole support and major caregiver of the family.
Over the years I have taken care of several MS patients that were very debilitated, and much younger than I was.
Can I go this long with only minimal symptoms and then progress more rapidly?
I am taking each day as a gift and not dwelling on it so much, but I am concerned.
Thank you all for being here!
Hi, Amy, and welcome to the forum. I'm surprised you weren't given a diagnosis years ago, based on your history. Optic neuritis very often is the first MS symptom, and most of the other issues you mention are also very common. Is your doctor an MS specialist? If at all possible it's better if that's who treats you, since neurology is a big field with many conditions, and lots of neuros are pretty ignorant of the specifics of MS, often getting it wrong.
In any event, I'd think you belong in the relapsing-remitting category, which has quite a few options for treatment. It's a good idea to read up on these, and I suggest the Nat'l MS Society web site as the place to start. Our members here have lots of experience with the various treatment approaches, so feel free to ask questions as they arise. We're good at information, support and friendship!
Yes, it's quite common for MS to be seemingly quiet for quite a few years and then come roaring back. I said 'seemingly' because the disease is actually always at work. It's a matter of luck, really, when new lesions as seen on MRI don't cause much in the way of symptoms, until they do.
Of course you are worried about the future. But please understand that MS patients are in a much better position in terms of treatment than was true only a relatively few years ago. And there are quite a few drugs to help with symptoms, as I'm sure you know. Another thing to understand is that if you have taken care of very debilitated MSers, these are the relative few of the many of us out there. The vast majority don't need nursing care so you wouldn't have seen them.
Most of us here function very well, all things considered. You will read about very normal events in our lives, along with our typical ups and downs, including those that everyone has. We still get sick with other ailments, we still get frustrated about MS situations, but in general our lives go on pretty well. I'm sure that once you become accustomed to life with MS you will be able to put things in perspective a bit more.
Once again, ask away if you have questions, as that's what this forum is for. Also, take a look at our Health Pages. There's a link at the bottom of the screen. You'll find lots of good info.
Take care,
ess
In any event, I'd think you belong in the relapsing-remitting category, which has quite a few options for treatment. It's a good idea to read up on these, and I suggest the Nat'l MS Society web site as the place to start. Our members here have lots of experience with the various treatment approaches, so feel free to ask questions as they arise. We're good at information, support and friendship!
Yes, it's quite common for MS to be seemingly quiet for quite a few years and then come roaring back. I said 'seemingly' because the disease is actually always at work. It's a matter of luck, really, when new lesions as seen on MRI don't cause much in the way of symptoms, until they do.
Of course you are worried about the future. But please understand that MS patients are in a much better position in terms of treatment than was true only a relatively few years ago. And there are quite a few drugs to help with symptoms, as I'm sure you know. Another thing to understand is that if you have taken care of very debilitated MSers, these are the relative few of the many of us out there. The vast majority don't need nursing care so you wouldn't have seen them.
Most of us here function very well, all things considered. You will read about very normal events in our lives, along with our typical ups and downs, including those that everyone has. We still get sick with other ailments, we still get frustrated about MS situations, but in general our lives go on pretty well. I'm sure that once you become accustomed to life with MS you will be able to put things in perspective a bit more.
Once again, ask away if you have questions, as that's what this forum is for. Also, take a look at our Health Pages. There's a link at the bottom of the screen. You'll find lots of good info.
Take care,
ess
I too am very surprised you weren't diagnosed much sooner. Ess provides you with some very good information, and I second what was said.
Please know that if you are a nurse and see MS patients, it's likely because they are having a relapse. It is not indicative of their everyday life or the typical course. It's a select sample.
My MS nurse (who specialises in this field for 100% of her working life) said she speaks with colleagues (who are not MS-specific nurses) who express statements similar to yours and she has to remind them that the patients they notice who have MS belie the many, many more that she sees that no one, even a professional, would ever suspect have a chronic illness (without looking at their chart). Basically, your brain has picked up and remembered the exceptions, not the rule because they are just that; exceptional.
I can imagine this is quite worrisome to you as it is all new. Your next steps will likely be picking your medication, of which there are several to choose from. MS, you'll learn, is an impossible disease to predict, but many people continue to work full time with the occasional modification. The key to managing MS is being resourceful and listening to your body. This is tough to learn in that first phase after diagnosis, but learn it you do. The fact that you've reached out to an active, helpful community is a great step too! Happy you've joined us!
Please know that if you are a nurse and see MS patients, it's likely because they are having a relapse. It is not indicative of their everyday life or the typical course. It's a select sample.
My MS nurse (who specialises in this field for 100% of her working life) said she speaks with colleagues (who are not MS-specific nurses) who express statements similar to yours and she has to remind them that the patients they notice who have MS belie the many, many more that she sees that no one, even a professional, would ever suspect have a chronic illness (without looking at their chart). Basically, your brain has picked up and remembered the exceptions, not the rule because they are just that; exceptional.
I can imagine this is quite worrisome to you as it is all new. Your next steps will likely be picking your medication, of which there are several to choose from. MS, you'll learn, is an impossible disease to predict, but many people continue to work full time with the occasional modification. The key to managing MS is being resourceful and listening to your body. This is tough to learn in that first phase after diagnosis, but learn it you do. The fact that you've reached out to an active, helpful community is a great step too! Happy you've joined us!
COMMUNITY LEADER
Hi and another welcome to our little MS community from me :D
Ess said most of what i was going to say but i did want to point out that even though your dx of MS is (shockingly) very recent, you've for all intense and purpose actually already been living with MS for over 10 years, the difference is that now you have it's name, can start appropriate treatment and pro-actively work towards bettering your future. You are still YOU!
I acknowledge i can flip just about any negative and find something positive to say but I truly believe it's always better to know the beast you battle, so you can hit it with the right sized stick. MS is a very individual condition, research and treatment options have totally changed in recent years, so please don't compare your self to those you've cared for in the past, you are still YOU!
Hugs..........JJ
Ess said most of what i was going to say but i did want to point out that even though your dx of MS is (shockingly) very recent, you've for all intense and purpose actually already been living with MS for over 10 years, the difference is that now you have it's name, can start appropriate treatment and pro-actively work towards bettering your future. You are still YOU!
I acknowledge i can flip just about any negative and find something positive to say but I truly believe it's always better to know the beast you battle, so you can hit it with the right sized stick. MS is a very individual condition, research and treatment options have totally changed in recent years, so please don't compare your self to those you've cared for in the past, you are still YOU!
Hugs..........JJ
Good morning.
You don't say what type of practice you are an RN at, but immisceo is very right on this. Your experiences with MS patients were few, and only with those that were having severe problems. The majority in your area have never passed through your facility, because they were getting along all right, as do the majority of MS patients. So, take a deep breath, and since you are online, please use the resources available, through this forum, and National MS Society (NMSS), MS Association of America, and others, focusing on the sections for the newly diagnosed. There, you will see that there is more to life with MS than just being in a doctor's office or hospital, and that MANY people can live great lives.
You don't say what type of practice you are an RN at, but immisceo is very right on this. Your experiences with MS patients were few, and only with those that were having severe problems. The majority in your area have never passed through your facility, because they were getting along all right, as do the majority of MS patients. So, take a deep breath, and since you are online, please use the resources available, through this forum, and National MS Society (NMSS), MS Association of America, and others, focusing on the sections for the newly diagnosed. There, you will see that there is more to life with MS than just being in a doctor's office or hospital, and that MANY people can live great lives.
I will add my welcome to the others here - I was diagnosed at 54, and understand a bit of your concerns for the future Since you are already a caregiver, it must amplify your concerns. I trust your doctor will give you treatment options and you will pick the one best for you and your lifestyle. These drugs really do offer us hope that wasn't available many years ago.
I hope we will see you around - this is a great community and someone is always willing to answer questions and hold your hand if need be.
I'm sorry you've joined the club - but glad you found us.
~Laura
I hope we will see you around - this is a great community and someone is always willing to answer questions and hold your hand if need be.
I'm sorry you've joined the club - but glad you found us.
~Laura
Thanks so much . I go back in August for another MRI to soo if there is any progression and then we will decide on treatment.
Thank you. You are right, and I was thinking the same thing. I have done fine for the last ten years and hopefully the next ten will be so good. I guess I needed that confirmation from people that live with it. Thanks again.
Thank you for your reply. I am an LPN and I currently work in a nursing home, and worked in home health for about 16 years prior to that. You are right that the patients that I worked with had the most progressive and debilitating forms types of MS. I also worked with a doctor that had MS. Her relapses would be severe and I guess it those relapses that register the most. Thanks again.
Thank you. I go back to the doctor in August for another MRI and to discuss treatment. I have been Vitamin D supplements all these years. Recently I have heard that it may be effective in slowing the progression of MS. Maybe I just got lucky. Thanks again.
Thanks so much. As long as I will be functional for the next 7 years, hopefully longer, I will be fine. Thanks for the encouragement.
Hello Amy,
I am sorry for your diagnosis. I am new around here too. I am no expert and I believe you've been given a great piece of advice. I would like to add that people around here are amazing and extremely helpful. There aren't many places on the internet where you'd find people this patient and kind.
Best wishes Amy. I hope all will be well.
I am sorry for your diagnosis. I am new around here too. I am no expert and I believe you've been given a great piece of advice. I would like to add that people around here are amazing and extremely helpful. There aren't many places on the internet where you'd find people this patient and kind.
Best wishes Amy. I hope all will be well.
Hi Amy - Sorry you had to go looking, but glad you found us :-)
There are some similarities in our stories. I was diagnosed with MS 20 years after it first appeared. Various seemingly unrelated symptoms appeared and disappeared during the intervening years. The dots were never connected because I wasn't looking for a connection.
Finally, a little more than 2 years ago at age 52, the dots got connected. I was diagnosed with Secondary Progressive MS. It's the stage of MS that many folks with RRMS progress to.
If you saw me on the street you would have no idea I had MS. I am living a complete and full life. I live by myself and tend to myself, 2 cats and 2 birds :-) I get up every morning and go to work. I travel, I bike ride, I annoy my girlfriend of 14 years :-)
It is very possible for people with MS to continue to lead "normal" lives, even after moving on to SPMS!
Kyle
There are some similarities in our stories. I was diagnosed with MS 20 years after it first appeared. Various seemingly unrelated symptoms appeared and disappeared during the intervening years. The dots were never connected because I wasn't looking for a connection.
Finally, a little more than 2 years ago at age 52, the dots got connected. I was diagnosed with Secondary Progressive MS. It's the stage of MS that many folks with RRMS progress to.
If you saw me on the street you would have no idea I had MS. I am living a complete and full life. I live by myself and tend to myself, 2 cats and 2 birds :-) I get up every morning and go to work. I travel, I bike ride, I annoy my girlfriend of 14 years :-)
It is very possible for people with MS to continue to lead "normal" lives, even after moving on to SPMS!
Kyle
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There are two things in Ms inflammation which comes and goes and nerve damage. Nerve damage is all about location and for each of us it is different.
There are all kinds of new drugs which slow progression. Things have changed so much since 2009 when I was diagnosed. New drugs are coming out. MS is not the disease it was 15 years ago.
Alex