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How/When do you know which TYPE you have?
Hello,
I am wondering at what point do you know what type of MS you have or how long you have had it? Of course I am going to ask my Dr. about this at my next appt, also. But you all are the true experts as you are living it.
I keep reading about relapses and I remember as a child/teen watching my mother go through this as well (I just did not know what that all meant back then). So I have seen what that looks first hand.
For me, the symptoms I have never go away. My first symptoms started about 1.5 years ago and have been present daily. Additional symptoms 2 months ago which led me here...and they have been present daily. I am probably consulting Dr. Google too much, but I am worried if I might have the progressive type (I am 45).
And now, I am starting to put together some other things I have been dealing with that I always attributed to something else.
1) Mommy bladder or from spinal cord lesions? (I DO have them): urgency/frequency issues for a few years. The past 6 months have lost control of my bladder on a few occasions even immediately after using the bathroom. I cannot seem to empty fully or tell when I am done since I don't seem to feel the flow anymore.
2) I like to run, but my abilities have steadily declined over the past year. I trained harder and performed more poorly. I have this stiffness in my ankles and burning sensation in my left heel that started last fall. I thought it was overuse injury, but I have not run in a month and it is still a problem. Every time I stand up I am so stiff I am walking like a 90 year old woman!
3) New thing that started last week. When I am at sitting still, my limbs will occasionally jerk (not that jerk you get when falling asleep). It's just a subtle uncontrollable jerk or twitch, but enough that I am aware. Is that an MS thing, or am I just going crazy?
Thanks for reading my ramblings!
I am wondering at what point do you know what type of MS you have or how long you have had it? Of course I am going to ask my Dr. about this at my next appt, also. But you all are the true experts as you are living it.
I keep reading about relapses and I remember as a child/teen watching my mother go through this as well (I just did not know what that all meant back then). So I have seen what that looks first hand.
For me, the symptoms I have never go away. My first symptoms started about 1.5 years ago and have been present daily. Additional symptoms 2 months ago which led me here...and they have been present daily. I am probably consulting Dr. Google too much, but I am worried if I might have the progressive type (I am 45).
And now, I am starting to put together some other things I have been dealing with that I always attributed to something else.
1) Mommy bladder or from spinal cord lesions? (I DO have them): urgency/frequency issues for a few years. The past 6 months have lost control of my bladder on a few occasions even immediately after using the bathroom. I cannot seem to empty fully or tell when I am done since I don't seem to feel the flow anymore.
2) I like to run, but my abilities have steadily declined over the past year. I trained harder and performed more poorly. I have this stiffness in my ankles and burning sensation in my left heel that started last fall. I thought it was overuse injury, but I have not run in a month and it is still a problem. Every time I stand up I am so stiff I am walking like a 90 year old woman!
3) New thing that started last week. When I am at sitting still, my limbs will occasionally jerk (not that jerk you get when falling asleep). It's just a subtle uncontrollable jerk or twitch, but enough that I am aware. Is that an MS thing, or am I just going crazy?
Thanks for reading my ramblings!
I don't have an event I can recall like you share. That's interesting about your feet though...
My feet have been numb and pins/needles for years. Once it started it never went away.
I hurt my back many years ago and attribute it to damage from low back injury (could still be). Another question for the doc I guess.
I recall once while cooking I had stubbed my toe. It didn't really hurt so thought nothing of it. Later I looked down and noticed I was bleeding all over the floor. Had totally sliced my toe open and didn't even feel it. There was blood all over the kitchen floor since I was moving all about while preparing dinner. That was probably 10 years ago.
Geez, that's sort of sad to read....
My feet have been numb and pins/needles for years. Once it started it never went away.
I hurt my back many years ago and attribute it to damage from low back injury (could still be). Another question for the doc I guess.
I recall once while cooking I had stubbed my toe. It didn't really hurt so thought nothing of it. Later I looked down and noticed I was bleeding all over the floor. Had totally sliced my toe open and didn't even feel it. There was blood all over the kitchen floor since I was moving all about while preparing dinner. That was probably 10 years ago.
Geez, that's sort of sad to read....
Hi ZD -
It can be difficult to pinpoint the first appearance of MS, especially if it was a little vague and a long time ago. For me it was pretty easy. 20 years before my both feet went numb for an extended period of time. That was The Beginning!
While Primary Progressive is certainly possible, it's relatively rare. Only about 10% of people with MS are diagnosed with primary progressive MS.
Kyle
It can be difficult to pinpoint the first appearance of MS, especially if it was a little vague and a long time ago. For me it was pretty easy. 20 years before my both feet went numb for an extended period of time. That was The Beginning!
While Primary Progressive is certainly possible, it's relatively rare. Only about 10% of people with MS are diagnosed with primary progressive MS.
Kyle
Kyle,
Thank you for your reply.
My first thought was that it could be primary progressive. I have never had symptoms that went away. Unless you count the numb turning to pins/needles.
It also could be I am just like you and have had it for a long time but just didn't know it and now am secondary progressive?
Thank you for your reply.
My first thought was that it could be primary progressive. I have never had symptoms that went away. Unless you count the numb turning to pins/needles.
It also could be I am just like you and have had it for a long time but just didn't know it and now am secondary progressive?
Hi ZD -
I think the borderline between RRMS and SPMS is pretty fuzzy. I think a lot has to do with how long you've actually had MS, rather than when you were diagnosed.
I was diagnosed a little more than 2 years ago, but apparently I'd had MS for 20 years at that point. My initial diagnosis was SPMS.
There are basically 2 kinds of symptoms. The first are symptoms caused by inflammation. These show up during relapses, when there is current inflammation in the CNS, and fade during periods of remission. Steroids can work to reduce the inflammation. Once the inflammation is reduced the symptoms resolve.
The second type of symptoms are those caused by nerve damage. Once there is nerve damage the symptoms tend to stick around. I have symptoms that are with me everyday. They can be very annoying, but not as debilitating s the symptoms that lead to my diagnosis.
The transition from RRMS to SPMS is marked by the waning of symptoms related to inflammation and the waxing of symptoms that are the result of nerve damage. When that transition occurs is unique to each of the 85% of people with RRMS that do transition to SPMS.
Kyle
I think the borderline between RRMS and SPMS is pretty fuzzy. I think a lot has to do with how long you've actually had MS, rather than when you were diagnosed.
I was diagnosed a little more than 2 years ago, but apparently I'd had MS for 20 years at that point. My initial diagnosis was SPMS.
There are basically 2 kinds of symptoms. The first are symptoms caused by inflammation. These show up during relapses, when there is current inflammation in the CNS, and fade during periods of remission. Steroids can work to reduce the inflammation. Once the inflammation is reduced the symptoms resolve.
The second type of symptoms are those caused by nerve damage. Once there is nerve damage the symptoms tend to stick around. I have symptoms that are with me everyday. They can be very annoying, but not as debilitating s the symptoms that lead to my diagnosis.
The transition from RRMS to SPMS is marked by the waning of symptoms related to inflammation and the waxing of symptoms that are the result of nerve damage. When that transition occurs is unique to each of the 85% of people with RRMS that do transition to SPMS.
Kyle
Yep. Next appointment we are discussing treatment. I don't think he said which type, but I could have tuned it out. I am bringing my hubby to next appt.
I have not kept a timeline, but need to start doing that. I developed a hand tremor 1.5 years ago (first left, then eventually right) and soon after came the balance issues. Next up was the numbness in my left arm and face, which had my friend dragging me to the ER. In the ER was the first time I mentioned any of my symptoms to a Dr.
All of these symptoms have persisted. Although the numbness (cold, dead feeling..turned into pins & needles after a few hours it has persisted). As for the balance, I just always feel a little drunk. I stumble a lot, but haven't fallen. It is worse on days that I am tired (like if I didn't get enough sleep).
I have not kept a timeline, but need to start doing that. I developed a hand tremor 1.5 years ago (first left, then eventually right) and soon after came the balance issues. Next up was the numbness in my left arm and face, which had my friend dragging me to the ER. In the ER was the first time I mentioned any of my symptoms to a Dr.
All of these symptoms have persisted. Although the numbness (cold, dead feeling..turned into pins & needles after a few hours it has persisted). As for the balance, I just always feel a little drunk. I stumble a lot, but haven't fallen. It is worse on days that I am tired (like if I didn't get enough sleep).
I enjoyed your reply!
Add the activity question to your list for your doctor! Are you keeping a timeline of symptoms for him/her? So sorry to hear you are actually a member of our club that no one wants to belong to! But welcome just the same.
I had a doctor gently tell me once, when I used to run, that he preferred I "walk" as my joints and body would last much longer. I took his advice! I do miss him; he quit his job to take care of his aging father; such dedication.
Your one new question about how long it took the dr to determine which type you have…….he should have told you when you were diagnosed! It seems you are like I was; when I was told, I went numb and don't remember half of what he said! He put my diagnosis in writing for me to obtain aids from the MS society, and that's when I remembered he had told me I had RRMS. I am the only one in my family with it; my husband's adopted family has one member with it. They feel I have had it for over 30 yrs but it was not diagnosed until 3 yrs ago due to some numb skull neuro's whom I won't mention!
Probably at your next meeting you will discuss a DMD drug. Those you might read up on - to decide which one you might want to try in case he/she leaves it up to you but be proactive, ask questions! In my case, I had no choice, my insurance would only pay for one and I've been happy, with a few bumps along the road, with it. I take Tysabri once a month. It also fits my lifestyle quite well. The home company who monitors it, is awesome to work with. They even found me a hospital in another state where I was for one month, to give me a dose while I was there visiting, and that hospital couldn't have been nicer!
Sarah
Add the activity question to your list for your doctor! Are you keeping a timeline of symptoms for him/her? So sorry to hear you are actually a member of our club that no one wants to belong to! But welcome just the same.
I had a doctor gently tell me once, when I used to run, that he preferred I "walk" as my joints and body would last much longer. I took his advice! I do miss him; he quit his job to take care of his aging father; such dedication.
Your one new question about how long it took the dr to determine which type you have…….he should have told you when you were diagnosed! It seems you are like I was; when I was told, I went numb and don't remember half of what he said! He put my diagnosis in writing for me to obtain aids from the MS society, and that's when I remembered he had told me I had RRMS. I am the only one in my family with it; my husband's adopted family has one member with it. They feel I have had it for over 30 yrs but it was not diagnosed until 3 yrs ago due to some numb skull neuro's whom I won't mention!
Probably at your next meeting you will discuss a DMD drug. Those you might read up on - to decide which one you might want to try in case he/she leaves it up to you but be proactive, ask questions! In my case, I had no choice, my insurance would only pay for one and I've been happy, with a few bumps along the road, with it. I take Tysabri once a month. It also fits my lifestyle quite well. The home company who monitors it, is awesome to work with. They even found me a hospital in another state where I was for one month, to give me a dose while I was there visiting, and that hospital couldn't have been nicer!
Sarah
Sarah,
Thank you for your reply. I am sorry if my text was confusing and appreciate you taking the time to muddle through it and provide some thoughts.
Yes, I received the diagnosis at my last appt. Yes, I had MRIs and have brain, c-spine and t-spine lesions. I was in a bit of shock and of course had NO questions at the time. Now, I have all these questions, and I do plan to ask them at my next appointment.
I am not looking for diagnostic answers from fellow patients, but rather some insight as I am just beginning this journey. Perhaps, the question is better stated as, "How long did it take for the Dr. to determine what type of MS you had?"
When I say I am consulting Dr. Google, I am only reading peer reviewed articles and reputable sites, such as the National Multiple Sclerosis Society (a good habit I picked up in grad school, lol).
I am one of those people who ignores her symptoms rather than think they have every deadly disease known to mankind. I've been to the ER twice in my life. The first time I ended up in the OR. The second time for stroke-like symptoms, but it was "just" MS. HA. So I don't think hypochondria is my problem, although I get your point, the mind can be very powerful.
Yes, my mother had MS (and my neurologist is aware of this) but I have no idea what type. I assume it was relapsing/remitting as she would occasionally get very ill and go into the hospital. I cannot ask her as she passed away a very long time ago. I never once worried that I would have this disease as I know it's not hereditary. Hearing those words was a big shock to me.
As for my activity level. I had been running about 35 miles per week and lifting weights regularly. Everything just seemed to be getting more difficult this past year and especially the past six months. The harder it became, the more I pushed myself, things felt even more difficult...round and round I went. So now I am wondering if it is related to the MS and should I consider some different exercises. I have been walking rather than running the past month.
Thank you for your reply. I am sorry if my text was confusing and appreciate you taking the time to muddle through it and provide some thoughts.
Yes, I received the diagnosis at my last appt. Yes, I had MRIs and have brain, c-spine and t-spine lesions. I was in a bit of shock and of course had NO questions at the time. Now, I have all these questions, and I do plan to ask them at my next appointment.
I am not looking for diagnostic answers from fellow patients, but rather some insight as I am just beginning this journey. Perhaps, the question is better stated as, "How long did it take for the Dr. to determine what type of MS you had?"
When I say I am consulting Dr. Google, I am only reading peer reviewed articles and reputable sites, such as the National Multiple Sclerosis Society (a good habit I picked up in grad school, lol).
I am one of those people who ignores her symptoms rather than think they have every deadly disease known to mankind. I've been to the ER twice in my life. The first time I ended up in the OR. The second time for stroke-like symptoms, but it was "just" MS. HA. So I don't think hypochondria is my problem, although I get your point, the mind can be very powerful.
Yes, my mother had MS (and my neurologist is aware of this) but I have no idea what type. I assume it was relapsing/remitting as she would occasionally get very ill and go into the hospital. I cannot ask her as she passed away a very long time ago. I never once worried that I would have this disease as I know it's not hereditary. Hearing those words was a big shock to me.
As for my activity level. I had been running about 35 miles per week and lifting weights regularly. Everything just seemed to be getting more difficult this past year and especially the past six months. The harder it became, the more I pushed myself, things felt even more difficult...round and round I went. So now I am wondering if it is related to the MS and should I consider some different exercises. I have been walking rather than running the past month.
I, unfortunately, am known for being blunt and cutting to the chase, so you may not like my answer but will try and give you some answers. Some of your text is confusing, so will try and go down it…..I will answer as best I can by indenting and starting with 2 **
Hello,
I am wondering at what point do you know what type of MS you have or how long you have had it? Of course I am going to ask my Dr. about this at my next appt, also. But you all are the true experts as you are living it.
**Your doctor is the one who is going to tell you which type you have and about how long they think you have had it. If you have had an MRI, then they will discuss it with you. No sense worrying about it until then; MS is usually a slow moving train as I call it, it does not progress rapidly like some diseases do….it can go years without progressing or not….
I keep reading about relapses and I remember as a child/teen watching my mother go through this as well (I just did not know what that all meant back then). So I have seen what that looks first hand.
** are you saying that your mother had MS? Does your doctor know about this? What has he told you about it? Do you know what type she had? The % is rather small of it tumbling down to children, but it does exists and does happen.
For me, the symptoms I have never go away. My first symptoms started about 1.5 years ago and have been present daily. Additional symptoms 2 months ago which led me here...and they have been present daily. I am probably consulting Dr. Google too much, but I am worried if I might have the progressive type (I am 45).
** Dr. Google, the famous CYA who is never wrong because he blankets everything with everything! LOL. You can get lost in that quagmire and drive yourself silly. MS presents itself in so many ways that its symptoms show up in most diseases. There are over 20 mimic diseases that have to be usually ruled out before MS is seriously considered. I am an RN and have laughed myself silly over some of the suggestions Google makes. One cannot believe everything Google says……..really.
And now, I am starting to put together some other things I have been dealing with that I always attributed to something else.
1) Mommy bladder or from spinal cord lesions? (I DO have them): urgency/frequency issues for a few years. The past 6 months have lost control of my bladder on a few occasions even immediately after using the bathroom. I cannot seem to empty fully or tell when I am done since I don't seem to feel the flow anymore.
***so if you have spinal cord lesions, then you have had an MRI? These lesions are difficult to find so a good neuro who has found them has surely told you what type of MS you may/may not have? Yes?
****many other problems can present these same problems, although they are common to MS patients.
2) I like to run, but my abilities have steadily declined over the past year. I trained harder and performed more poorly. I have this stiffness in my ankles and burning sensation in my left heel that started last fall. I thought it was overuse injury, but I have not run in a month and it is still a problem. Every time I stand up I am so stiff I am walking like a 90 year old woman!
*****I think this should be run by your ortho doctor before assuming that this is due to MS. There are many people who run who actively run and exercise with MS. I do not as mobility is one of my problems and I do miss walking. If you feel stiff every time you stand up, you need to examine your activity level. Arthritis can present the same symptoms and still, once again, I recommend talking to an ortho. You may need some PT.
3) New thing that started last week. When I am at sitting still, my limbs will occasionally jerk (not that jerk you get when falling asleep). It's just a subtle uncontrollable jerk or twitch, but enough that I am aware. Is that an MS thing, or am I just going crazy?
**it can be an MS thing but it can be caused by other things as well; once again, are you trying to make the symptom fit the Dx? I have friends who have this and they do not have MS, so no, you are not going crazy, you are just trying to get answers before checking this out with your doctor and yeah, we all tend to want to do this!
Thanks for reading my ramblings!
**no problem, we are all here to help each other and are just patients helping each other. Sometimes we are super polite and then some of us just cut thru the red tape and ask questions back at the patients! I'm one of those…..I mean no disrespect, but these are things that bounce out at me as I read your post. Hopefully it will help, but if not, I have tried. I mean no harm, but have learned it doesn't help to "put too much sugar in the coffee" as my gramma used to say…..
Welcome to our corner and I hope you find answers and that you don't have MS. I wish you luck in your search but put Dr. Google on the shelf! LOL
Sarah
Hello,
I am wondering at what point do you know what type of MS you have or how long you have had it? Of course I am going to ask my Dr. about this at my next appt, also. But you all are the true experts as you are living it.
**Your doctor is the one who is going to tell you which type you have and about how long they think you have had it. If you have had an MRI, then they will discuss it with you. No sense worrying about it until then; MS is usually a slow moving train as I call it, it does not progress rapidly like some diseases do….it can go years without progressing or not….
I keep reading about relapses and I remember as a child/teen watching my mother go through this as well (I just did not know what that all meant back then). So I have seen what that looks first hand.
** are you saying that your mother had MS? Does your doctor know about this? What has he told you about it? Do you know what type she had? The % is rather small of it tumbling down to children, but it does exists and does happen.
For me, the symptoms I have never go away. My first symptoms started about 1.5 years ago and have been present daily. Additional symptoms 2 months ago which led me here...and they have been present daily. I am probably consulting Dr. Google too much, but I am worried if I might have the progressive type (I am 45).
** Dr. Google, the famous CYA who is never wrong because he blankets everything with everything! LOL. You can get lost in that quagmire and drive yourself silly. MS presents itself in so many ways that its symptoms show up in most diseases. There are over 20 mimic diseases that have to be usually ruled out before MS is seriously considered. I am an RN and have laughed myself silly over some of the suggestions Google makes. One cannot believe everything Google says……..really.
And now, I am starting to put together some other things I have been dealing with that I always attributed to something else.
1) Mommy bladder or from spinal cord lesions? (I DO have them): urgency/frequency issues for a few years. The past 6 months have lost control of my bladder on a few occasions even immediately after using the bathroom. I cannot seem to empty fully or tell when I am done since I don't seem to feel the flow anymore.
***so if you have spinal cord lesions, then you have had an MRI? These lesions are difficult to find so a good neuro who has found them has surely told you what type of MS you may/may not have? Yes?
****many other problems can present these same problems, although they are common to MS patients.
2) I like to run, but my abilities have steadily declined over the past year. I trained harder and performed more poorly. I have this stiffness in my ankles and burning sensation in my left heel that started last fall. I thought it was overuse injury, but I have not run in a month and it is still a problem. Every time I stand up I am so stiff I am walking like a 90 year old woman!
*****I think this should be run by your ortho doctor before assuming that this is due to MS. There are many people who run who actively run and exercise with MS. I do not as mobility is one of my problems and I do miss walking. If you feel stiff every time you stand up, you need to examine your activity level. Arthritis can present the same symptoms and still, once again, I recommend talking to an ortho. You may need some PT.
3) New thing that started last week. When I am at sitting still, my limbs will occasionally jerk (not that jerk you get when falling asleep). It's just a subtle uncontrollable jerk or twitch, but enough that I am aware. Is that an MS thing, or am I just going crazy?
**it can be an MS thing but it can be caused by other things as well; once again, are you trying to make the symptom fit the Dx? I have friends who have this and they do not have MS, so no, you are not going crazy, you are just trying to get answers before checking this out with your doctor and yeah, we all tend to want to do this!
Thanks for reading my ramblings!
**no problem, we are all here to help each other and are just patients helping each other. Sometimes we are super polite and then some of us just cut thru the red tape and ask questions back at the patients! I'm one of those…..I mean no disrespect, but these are things that bounce out at me as I read your post. Hopefully it will help, but if not, I have tried. I mean no harm, but have learned it doesn't help to "put too much sugar in the coffee" as my gramma used to say…..
Welcome to our corner and I hope you find answers and that you don't have MS. I wish you luck in your search but put Dr. Google on the shelf! LOL
Sarah
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