Aa
Progression? Different types of MS
I was dx'd with RRMS last year. Over this past yearI have progression.
I now use a rollator, cane, or anything else I can hang onto.
My strength in my right hand is pathetic. My right leg strength is bad too.
I had ON twice in 2007 along with a few other symptoms and a positive MRI.
Since then I have progressed to balance issues and weakness.
My Neurological exam has gone from not too bad to my MS doctor wanting me in weekly PT and OT.
Since my ON I have not had a clear attack. One where I get zonked by a symptom and then improve.
But there is some sort of something going on.
I am confused by the different types of MS.
Can any one clear this up for me? Does RRMS hit you and then get better with some left over symptoms only? Or can you have an initial flare and continue to progress from there?
LA
I now use a rollator, cane, or anything else I can hang onto.
My strength in my right hand is pathetic. My right leg strength is bad too.
I had ON twice in 2007 along with a few other symptoms and a positive MRI.
Since then I have progressed to balance issues and weakness.
My Neurological exam has gone from not too bad to my MS doctor wanting me in weekly PT and OT.
Since my ON I have not had a clear attack. One where I get zonked by a symptom and then improve.
But there is some sort of something going on.
I am confused by the different types of MS.
Can any one clear this up for me? Does RRMS hit you and then get better with some left over symptoms only? Or can you have an initial flare and continue to progress from there?
LA
Hi! I was dx. 8yrs ago w/ RRMS. This past Dec I went to Chicago & saw a neuro who said I now have SPMS. When I got home my neuro here agreed.
It was great to have both Dr's talking & agree in my condition.
I don't know of too many Dr's willing to share in A paients care especially if they are both in the same type of pratice.
I am so Blessed to have a wonderful Dr. who also talkes to my other Dr's I see like my Urologist, Gastroenterolgist & my PCP.
It's been a long rough trip, but I've have such wonderful help along the way. Nona Judy
I
It was great to have both Dr's talking & agree in my condition.
I don't know of too many Dr's willing to share in A paients care especially if they are both in the same type of pratice.
I am so Blessed to have a wonderful Dr. who also talkes to my other Dr's I see like my Urologist, Gastroenterolgist & my PCP.
It's been a long rough trip, but I've have such wonderful help along the way. Nona Judy
I
My MRI showed enhancement in 07 but the one I had last spring did not. Well it did show active ON though so if that counts as lesion enhancement then yes.
Several years ago I had trouble with a numb foot and eye pain. Had an Mri with contrast of my brain and nothing showed.
Two years later I had my first attack of Trigeminal Neuralgia. It let up for a while and then I had another painful attack. Both times my doctor really wanted me to start sezuire medication but I refused. STUPID!
From that point on I had face pain off and on. I was so miserable. The in May 07 I had my first attack of ON with significant weakness on my right side. My eye sight did not return to normal. My strength got better but not back to my norm.
Jan 08 another attack of ON confirmed with an MRI and my vision field test was worse this time than last.
The pain from the ON is gone but my vision is not back to normal there. I have problems with double vision.
From my last experence with ON to present I have had problems with falling. I have to use a rollator and cane outside of my home.
Inside I just stay close to something to hang onto. My balance and strength issues are not improving.
My MS doctor talked about starting me on steriods but decided against it. Maybe he thought it would not work? I have high blood pressure so I don't want to mess with the steriods anyway.
I am just not having any clear cut episodes that would account for my balance and strength continuing to decline.
My PT says I should not be walking unassisted and should have hand controlls for my van.
My OT said my hand strength is very reduced. She used a strength meter to measure my hand strength. Someone my age should get a 40. I got a 2 with my right hand and 17 with my left.
She gives me 3 tries with each hand and every time my outcome show below normal strentgh and quick tiring. My numbers go down.
So anyway....that is the story. I know there are bits I am leaving out. I can not relate a story back to someone verbally. If I can type it out I am pretty much ok but getting my thoughts to work with my mouth is a very difficult task any more.
I am just concerned, frustrated, and wondering.
LA
Several years ago I had trouble with a numb foot and eye pain. Had an Mri with contrast of my brain and nothing showed.
Two years later I had my first attack of Trigeminal Neuralgia. It let up for a while and then I had another painful attack. Both times my doctor really wanted me to start sezuire medication but I refused. STUPID!
From that point on I had face pain off and on. I was so miserable. The in May 07 I had my first attack of ON with significant weakness on my right side. My eye sight did not return to normal. My strength got better but not back to my norm.
Jan 08 another attack of ON confirmed with an MRI and my vision field test was worse this time than last.
The pain from the ON is gone but my vision is not back to normal there. I have problems with double vision.
From my last experence with ON to present I have had problems with falling. I have to use a rollator and cane outside of my home.
Inside I just stay close to something to hang onto. My balance and strength issues are not improving.
My MS doctor talked about starting me on steriods but decided against it. Maybe he thought it would not work? I have high blood pressure so I don't want to mess with the steriods anyway.
I am just not having any clear cut episodes that would account for my balance and strength continuing to decline.
My PT says I should not be walking unassisted and should have hand controlls for my van.
My OT said my hand strength is very reduced. She used a strength meter to measure my hand strength. Someone my age should get a 40. I got a 2 with my right hand and 17 with my left.
She gives me 3 tries with each hand and every time my outcome show below normal strentgh and quick tiring. My numbers go down.
So anyway....that is the story. I know there are bits I am leaving out. I can not relate a story back to someone verbally. If I can type it out I am pretty much ok but getting my thoughts to work with my mouth is a very difficult task any more.
I am just concerned, frustrated, and wondering.
LA
Positive MRI, I have heard, can mean different things to different Neuro's. My Neuro would say that I had a "positive MRI," if it showed any lesions and would say I was in a current flair-up if any of the lesions absorbed the contrast dye, which would also highlight the outer surface of the brain, hence "positive active MS."
Forgive me if I am repeating myself, but you already know that the central nervous system, is a contained unit, so to speak. To protect that area from bacteria and virus'. The blood brain barrier. So if you are in a current attack or recently, within about 2-3 weeks, the dye will get through the BBB and light up the whole outside of the brain and anything else that is currently active, such as lesions. I understand this is from the inflammation around the lesions. Fluid.
_______________________________________________________
LA-are you showing any signs of having attacks, that last more than a few days to weeks, or does everything seem to blend in and you never fully recover from your symptoms? This can happen in RRMS, but can also indicate a slight progression. My Neuro tells me that sometimes her MS patients show a very slow decline, while still having small relapses and remissions. She said that there can be a fine line between RRMS and the progression of MS.
She also said that the older we get, the more likely we are to show some progression. Her advice to me, is that few go on to be totally disabled from MS, if they have had over a decade of a clear RR course. Spinal lesions seem to cause the most problems, as time goes on.
I am just speaking on what I have heard from my Neuro and what I can tell you from personal experience. I feel like I have to keep reminding people that I am just a person with MS, not a physician with any expertise....I am only sharing MY experiences. I am not pointing any fingers at you, sweetheart, but it seems that the more I post about my PERSONAL experiences with MS, the more I get called down for what I say.
So please keep in mind, that I offer this post to you....as a friend that cares very deeply about you and wants to TRY to help if I can. I DO care. You and I go pretty far back in our experiences on MedHelp. I want so much for you to get some relief from your discomfort.
I will say my prayers for you, that this dern MS stops in it's tracks and that you are NOT progressing. MS is so hard to figure out and understand.
Much Love and Lots of Huggie Wuggies to you and LA,
Heather
Forgive me if I am repeating myself, but you already know that the central nervous system, is a contained unit, so to speak. To protect that area from bacteria and virus'. The blood brain barrier. So if you are in a current attack or recently, within about 2-3 weeks, the dye will get through the BBB and light up the whole outside of the brain and anything else that is currently active, such as lesions. I understand this is from the inflammation around the lesions. Fluid.
_______________________________________________________
LA-are you showing any signs of having attacks, that last more than a few days to weeks, or does everything seem to blend in and you never fully recover from your symptoms? This can happen in RRMS, but can also indicate a slight progression. My Neuro tells me that sometimes her MS patients show a very slow decline, while still having small relapses and remissions. She said that there can be a fine line between RRMS and the progression of MS.
She also said that the older we get, the more likely we are to show some progression. Her advice to me, is that few go on to be totally disabled from MS, if they have had over a decade of a clear RR course. Spinal lesions seem to cause the most problems, as time goes on.
I am just speaking on what I have heard from my Neuro and what I can tell you from personal experience. I feel like I have to keep reminding people that I am just a person with MS, not a physician with any expertise....I am only sharing MY experiences. I am not pointing any fingers at you, sweetheart, but it seems that the more I post about my PERSONAL experiences with MS, the more I get called down for what I say.
So please keep in mind, that I offer this post to you....as a friend that cares very deeply about you and wants to TRY to help if I can. I DO care. You and I go pretty far back in our experiences on MedHelp. I want so much for you to get some relief from your discomfort.
I will say my prayers for you, that this dern MS stops in it's tracks and that you are NOT progressing. MS is so hard to figure out and understand.
Much Love and Lots of Huggie Wuggies to you and LA,
Heather
I should clarify......when I mention the right dx of RR, don't want to give the impression that you were misdx'd with it. Many are dx'd w/RR, since initially Drs are unable to predict your course. Time seems to tell the tale ....
ttys,
Shell
ttys,
Shell
Hey LA,
I believe Lu says it well, but it's the RR stuff that gets confusing. And everyone's is so different, but yet there are similarities.
Faced with progression like you've had, you are probably wondering if RR is the right dx or not. And, if not how does that dictate your future therapy? Would something else get you to that "remitting" part? Or at least like Laura says, a new "normal."
You can have an initial attack and progress from there, that is for sure, but that wouldn't be RRMS from what I understand of the categories.
LA, when you say positive MRI, do you have new "enhancing" lesions? Or, just new lesions?
ttys,
shell
I believe Lu says it well, but it's the RR stuff that gets confusing. And everyone's is so different, but yet there are similarities.
Faced with progression like you've had, you are probably wondering if RR is the right dx or not. And, if not how does that dictate your future therapy? Would something else get you to that "remitting" part? Or at least like Laura says, a new "normal."
You can have an initial attack and progress from there, that is for sure, but that wouldn't be RRMS from what I understand of the categories.
LA, when you say positive MRI, do you have new "enhancing" lesions? Or, just new lesions?
ttys,
shell
LA,
As I understand it, with each relapse we have the chance of picking up new permanent symptom(s). We also have a chance with each remitting phase for our symptoms to be less obvious, but not necessarily always so. After each relapse we have a new "normal" and don't necessarily go back to where we were physically before the exacerbation.
Someone correct me if I'm wrong........
Lulu
As I understand it, with each relapse we have the chance of picking up new permanent symptom(s). We also have a chance with each remitting phase for our symptoms to be less obvious, but not necessarily always so. After each relapse we have a new "normal" and don't necessarily go back to where we were physically before the exacerbation.
Someone correct me if I'm wrong........
Lulu
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
