Aa
Brand new here
About two weeks after my 60th birthday I was diagnosed with RRMS, confirmed by symptoms (right leg weakness, numb right foot, some urinary problems, vertigo), spinal lesions on MRI, and o-bands after LP. Has anyone else received a diagnosis at this age? Also, I'm in Baltimore and rying to decide between Hopkins and UMaryland for treatment — an suggestions?
WELCOME TO OUR CYBER FAMILY,THIS IS A GREAT GROUP HER A WEALTH OF IMFORMATION AND HUMOR.
SORRY THAT A DIAGNOSIS OF MS HAS BROUGHT YOU TO US.
I WAS DIAGNOSED AT THE AGE OF 41,ORIGINALLY WITH RRMS BUT NOW SPMS,MY LOCAL NEURO IS GOOD,BUT I AM CURRENTLY GOING TO GO TO THE CLEVELAND CLINIC MS MELLON INSTITUTE,THEY TREAT YOU AS A WHOLE PERSON,COUNSELING,PHYSICAL THERAPY,PAIN MANAGEMENT AND A TEAM OF MS DOCTORS.
I'D LIKE TO GET THEIR IMPUT AND MAKE SURE MY LOCAL NEURO IS ON THE RIGHT TRACK.
T-LYNN
SORRY THAT A DIAGNOSIS OF MS HAS BROUGHT YOU TO US.
I WAS DIAGNOSED AT THE AGE OF 41,ORIGINALLY WITH RRMS BUT NOW SPMS,MY LOCAL NEURO IS GOOD,BUT I AM CURRENTLY GOING TO GO TO THE CLEVELAND CLINIC MS MELLON INSTITUTE,THEY TREAT YOU AS A WHOLE PERSON,COUNSELING,PHYSICAL THERAPY,PAIN MANAGEMENT AND A TEAM OF MS DOCTORS.
I'D LIKE TO GET THEIR IMPUT AND MAKE SURE MY LOCAL NEURO IS ON THE RIGHT TRACK.
T-LYNN
Hi again. At Hopkins they said nothing to me about a team approach, possibly because they don't think I need team services at this point, I don't know.
Check out the U. of MD's web site, as it seems to emphasize the team much more. Hopkins is natch very research-oriented, as you say, but that doesn't mean the treatment end is neglected. They left it up to me to pick the med, and I chose Copaxone. So far it's fine in terms of side effects. Some rather nasty stinging for 30 minutes or so and that's about it.
ess
Check out the U. of MD's web site, as it seems to emphasize the team much more. Hopkins is natch very research-oriented, as you say, but that doesn't mean the treatment end is neglected. They left it up to me to pick the med, and I chose Copaxone. So far it's fine in terms of side effects. Some rather nasty stinging for 30 minutes or so and that's about it.
ess
The goal for you eddoc is to take the appropriate drugs to prevent SPMS. I am inclined to think that it is SPMS but who am I to disagree. That is only my opinion. It is so hard to tell. If you have had relapses and remissions through your life then I would say RRMS but if your symptoms started a year or two ago and have not gotten better then it would be the same as mine.
My diagnosis was pretty swift when the tests came back with O-bands and lesions on the brain. My Neuro recommended Rebif for SPMS because he said "it packed a punch and was more aggressive". I declined, whether for the right or wrong reasons.
The diagnostic process of exactly which type of MS can be very hard and I personally think it is just an educated guess by the doctor. I mean you are 62 and dxed with RRMS and I was 65 and diagnosed with SPMS? I haven't had relapses and remissions during my lifetime. It is hard to accept one incident 44 years prior as the first CIS. If I had not mentioned that brief episode (and I nearly didn't) I wonder if the dx would have been different.
Is it PPMS, SPMS or RRMS - that is the question? Episodes of relapse with recovery and a fairly stable phase between relapses is usually diagnosed as RRMS in 80% of people. I don't really fit in there.
The transition from RRMS to SPMS does not occur at a precise point in time but the clincal relapses become less distinct episodes, recovery becomes weaker and the RRMS stage blends into the SPMS stage - they say commonly 10-20 years after onset of symptoms. Again, I don't seem to fit in here either.
With SPMS there is a gradual deterioration with our without relapses in a person that previously had RRMS. The beginning of the SPMS stage can be dated only in retrospect once it is obvious that the patient has continuously worsened for months or years
I have read that people with SPMS have more or less identical MRI and CSF findings as those people with PPMS who have onset of symptoms in middle age. I don't know if anyone here has been diagnosed with PPMS in middle age but it would be interesting to see if that theory were true. I personally had 2 brain lesions and 2 O-bands on diagnosis of SPMS. Maybe that is how they arrived at it. It has been said, also, that people with PPMS with onset in MIDDLE AGE probably have SPMS but they say PPMS because there is lack of evidence of prior clinical relapses during the early stages of the disease.
Anyway, now I have finished my dissertation I wish you every success in getting the best treatment available which may now halt this thing in its tracks. Just putting my thoughts in writing. Please stay with us and let us know how you get on because we are all very interested.
Marcie (aka Siddy1)
My diagnosis was pretty swift when the tests came back with O-bands and lesions on the brain. My Neuro recommended Rebif for SPMS because he said "it packed a punch and was more aggressive". I declined, whether for the right or wrong reasons.
The diagnostic process of exactly which type of MS can be very hard and I personally think it is just an educated guess by the doctor. I mean you are 62 and dxed with RRMS and I was 65 and diagnosed with SPMS? I haven't had relapses and remissions during my lifetime. It is hard to accept one incident 44 years prior as the first CIS. If I had not mentioned that brief episode (and I nearly didn't) I wonder if the dx would have been different.
Is it PPMS, SPMS or RRMS - that is the question? Episodes of relapse with recovery and a fairly stable phase between relapses is usually diagnosed as RRMS in 80% of people. I don't really fit in there.
The transition from RRMS to SPMS does not occur at a precise point in time but the clincal relapses become less distinct episodes, recovery becomes weaker and the RRMS stage blends into the SPMS stage - they say commonly 10-20 years after onset of symptoms. Again, I don't seem to fit in here either.
With SPMS there is a gradual deterioration with our without relapses in a person that previously had RRMS. The beginning of the SPMS stage can be dated only in retrospect once it is obvious that the patient has continuously worsened for months or years
I have read that people with SPMS have more or less identical MRI and CSF findings as those people with PPMS who have onset of symptoms in middle age. I don't know if anyone here has been diagnosed with PPMS in middle age but it would be interesting to see if that theory were true. I personally had 2 brain lesions and 2 O-bands on diagnosis of SPMS. Maybe that is how they arrived at it. It has been said, also, that people with PPMS with onset in MIDDLE AGE probably have SPMS but they say PPMS because there is lack of evidence of prior clinical relapses during the early stages of the disease.
Anyway, now I have finished my dissertation I wish you every success in getting the best treatment available which may now halt this thing in its tracks. Just putting my thoughts in writing. Please stay with us and let us know how you get on because we are all very interested.
Marcie (aka Siddy1)
My only thoughts about a good clinic are that they would have a complete team of different specialties (PT, nursing, etc) who know the problems and talk to one another regularly. My doc is OK — kind of a minimalist in terms of communication, but he seems to know his stuff (based on my one and one half whole weeks of research) and does have many patients with MS.
I'm only 30 minutes from Hopkins. My son uses their Kennedy Krieger facility for many services related to his cerebral palsy. They are definitely cutting edge but I have heard they are much more research oriented than treatment oriented. I have asked for my records o be sent o them for a second opinion at a minimum.
My symptoms have been slowly evolving over several years and I couldn't get anyone to take them too seriously — just lots of different tests with no conclusion. When it got to where everyone at work kept commenting on my limp and I couldn't walk the dog most days, I started over with my main doc, then my neurologist. The MRI, followed by LP did the trick. That part took only three weeks — I wish it could have been diagnosed a year or more ago, when walking really started to slow down. My neurologist has recommended Copaxone and I'm going back to see him on Monday. Based on his recommendation and my reading, I think I should go ahead with it. Any thoughts?
I bet that was a bit of a shock, because I know it was for me. I was diagnosed with SPMS at 65. MS can be diagnosed at any age - it might have been 'smouldering' for years without showing significant symptoms.
I can look back now over 47 years and see a few markers in my 20's which in of themselves would not have given cause for neurological testing or even cause for concern. Each case of MS is unique unto itself, I feel.
Hopefully you will have a slow progression of symptoms. Good luck with your search for treatment. At least you got a diagnosis. Did it take a long time?
Marcie
I can look back now over 47 years and see a few markers in my 20's which in of themselves would not have given cause for neurological testing or even cause for concern. Each case of MS is unique unto itself, I feel.
Hopefully you will have a slow progression of symptoms. Good luck with your search for treatment. At least you got a diagnosis. Did it take a long time?
Marcie
Getting the diagnosis is the hardest part by far. Once past that hurdle, I think it's a matter of having a decent neuro who knows what he or she is doing and who is good to work with, someone you will like for the long haul. It's a VERY long haul. With few exceptions (I hope) neuros know the CRAB drugs, the pain meds, the steroid treatments, etc. That doctor should continue periodic full exams, MRIs on some regular basis, prescribe as needed and be pleasant and helpful. If you think your current neuro is up to all of this, good, not a problem. If not, look into others. It's hard to say what experience you will get dealing with any clinic as a whole, since it's the individual who matters at that point.
ess
ess
Hi! Welcome to the site! I wrote you before this one, I dont know what happened to it.Anyway, My brother has an appt. this month for his daughter. at Hopkins. It took about six months to get her seen. Hopkins is # one in the nation if I'm correct. Duke being third. My Neuro will be from Duke. Her practice is in Chapel Hill, NC. I hope you will go to Hopkins.How far of a drive will you have?
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