RRMS

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RRMS

Postby MOMTO3 » Sun Feb 06, 2005 6:17 am

hello all,

had a few questions, was wondering if all of you who have rrms, could let me know how often you have experienced exaserbations? do you find it difficult to do daily chores?

i am asking because i was dx'ed with rr and am wondering if misdx'ed, i am going to see a new neuro next week, as insurance forced me to change but i believe is for best, as my other neuro has not done 1 blood test in the 8 months i have been onn avonex, and yes i know avonex is supposed to help with lesions not so much the symptoms, but i have to wonder what avonex is doing since i have been on have had 3 pretty extreme lapses. i find doing laundry or just doing the dishes causes me to have to rest for long periods of time, and to walk to the bus stop with my kids, makes my legs hurt horribly and it is only 4 houses. any input on others symptoms, or experiences with RR would be greatly appreciated, thank you
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Postby OddDuck » Sun Feb 06, 2005 7:48 am

Hi!

I think maybe your question is a "little" confusing. By misdiagnosed, are you wondering if you might have a progressive form of MS instead of RRMS?

As far as comparing symptoms or relapses between any two people with RRMS, that is next to impossible, really. Everyone is so different.

Only a little more time (and follow-up MRIs, etc.) will tell your doctors what stage of MS you are in or that you may be transitioning into, such as Secondary Progressive, for example.

It is going to be too complex of a situation for you to be able to determine that yourself.

But, does RRMS result in the type and severity of symptoms that you are currently struggling with? Yes. What you mention is pretty common for the most part, symptomatically speaking.

Deb
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Postby MOMTO3 » Sun Feb 06, 2005 9:18 am

yes i meant by misdx, that i am wondering if it could be a progressive form. see there hasnt been 1 week in a year span that i have been able to feel my whole body, meaning every month or so something else goes numb or is burning, between my right hand then my feet, then my left leg then whole left side, now my left hand. i know that every person, with ms has diffent symptoms, and varies, but was wondering i guess mainly if with rr you get them so frequently. i thought usually with rr you have some periods where you really didnt have "promenent" symptoms, meaning not that you were completly fine, but that it wasn't so disabling at all times. i am sorry if i sound confusing. i guess it is because at the moment i am really confused :?
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Postby OddDuck » Sun Feb 06, 2005 10:22 am

Yes, it's possible to have RRMS and have frequent relapses and/or regular symptoms. You can have RRMS and your symptoms can vary and also be consistent in between exacerbations. Is there always complete remission in between relapses with RRMS? No. Even having RRMS, relapses can be quite frequent until it's brought under control.

RRMS itself can "feel" like it's progressive, though. Having RRMS doesn't mean that it is any less symptomatic, etc. It relates more to how quickly you progress to different levels of permanent disability.

MS itself in any form is not pleasant in the least (to say the least).

Hang in there!

Deb

EDIT: Again, though, only your doctors can determine for certain what stage or type of MS you may have. It's too difficult to determine just based on number of relapses or symptoms, etc.
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Postby namaah » Sun Feb 06, 2005 11:36 am

Thank you OddDuck for the info and MOMTO3 for asking! My neuro asked me which I thought I was, RRMS or SPMS :roll: That was at my diagnosis :lol:
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Postby OddDuck » Sun Feb 06, 2005 12:03 pm

You're welcome!

Actually, it is being ascertained that even in RRMS, the same as in SPMS, there is "progression", albeit more silent and less noticeable, in between relapses, so those types of "classifications" of MS (i.e. RRMS, SPMS, PPMS, etc.) are fast becoming outmoded. They are still used, but it's becoming almost impossible to determine the difference between RRMS and SPMS since the determining factor that differs between the two is becoming more and more blurred and increasingly difficult to determine. It boils down to "rate of decline".

IF you believe that "permanent" disability is happening more rapidly in between actual relapses and exacerbations, it is most often then referred to as SPMS. But again, telling the difference between the two is becoming harder and harder for even the educated professionals to do. That's probably why your doctor asked YOU what you thought you had.

True "primary progressive MS" is a little easier to determine, because the two main criteria is the rapid decline to disability without experiencing "remissions" of any type, and from the lack of inflammation in PPMS that is evidenced in RRMS and SPMS.

There is a push now within the MS research field to get rid of those types of classifications altogether and change over to "patterns" of MS instead. Which more aptly defines the different pathogenesis that is taking place in various forms of MS and basically has nothing to do with "rate of decline" or "relapses". That would also make tailoring drug treatment for different patterns of MS easier to accomplish. Not everybody has the same biological or pathological activity which leads to their exhibition of or diagnosis of MS.

Hard to explain, which also paradoxically HELPS to explain why it is so difficult to determine between RRMS and SPMS. Only true PPMS sets itself aside clearly from the others.

Deb
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Wondering Too...

Postby vajkb2 » Fri Feb 25, 2005 10:22 am

I got my DX of RRMS in November 2003. Since then I feel like I am on a steep slope with Roller Skates. I am questioning my DX now and have an appt at the MS clinic here in Va next week. Hopefully they will be able to shed some light on what I am going through.

I am very confused though about my problems as my first real attack in July 03 was very apparent (Woke up with arms and legs completely numb). For the past 6 months I have been dealing with weird other symptoms that I am attributing to MS but I cannot get confirmation -- (Facial Twitching, Teeth Chattering, Drunken Stupor Feeling most of the time and terrible fatigue).

Reading the responses to this post are quite enlightening. I will post here after my appt and let you know what they say about my DX...

John
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