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Old 05-19-2008, 04:59 PM #91
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Default this certainly helped me--just got my second mri results

and i am confused, disappointed and somewhat hopeful--so i will go back and try to glean more info from this thread...basically i seem to have more "hopefully small" spots but it is still "more" than i wanted. nothing on the spine and the larger initial lesion that was present on mri 1 has "diminished considerably". but felt really bad and sad and was, of course drawn back to this forum to seek solace in "being" with others and reading about your experiences..so this thread is a definite high point in a day of confusion...i see my neuro next week to compare mri to mri two...so much of the randomness of this disease basically sucks...will keep reading on...tried to look up all the terms, etc. but it was this thread that is pulling me out of my funk!

notes on my brain follow:
FINDINGS: The ventricular system, cortical sulci and basilar
cisterns are within normal limits. No shift is seen to the midline
structures. There are no intra or extraaxial masses and there are no
extraaxial fluid collections. Abnormal periventricular deep white
matter signal changes are noted and though bilaterally, they are
slightly more prominent on the left. There is a relatively right
angle orientation between the lesions and the roof of the lateral
ventricles suggesting Dawson 's fingers which are consistent with
demyelinating disease. The vascular flow voids are normal as are the
seventh and eighth nerve complexes and posterior fossa. Following
contrast administration, there is dot-like abnormal enhancement noted
in the posterior left lower parietal lobe, within the posterior
central portions of the corpus callosum (splenium), and adjacent to
and just lateral to the left temporal tip.

When compared with a prior exam dated 2/10/08, a single large
abnormal enhancing plaque that was described on the left in the
periventricular region has disappeared. The three abnormal dot-like
sulci of abnormal enhancement noted today are not clearly imaged on
the earlier study though one is in close proximity to the enlarged
enhancing lesion that was noted earlier though it is felt to probably
be at a different site. On the nonenhanced portions of this study,
the prominent abnormal focus which showed enhancement on the earlier
study does show some residual abnormal white matter signal changes
but only on the preenhanced portions of today's exam. There are at
least two right-sided periventricular abnormal deep white matter foci
noted on the current exam on the precontrast portions of this study
which were not present on the earlier exam and at least one focus in
the posterior left parietal periventricular region that was present
earlier is noted today where it is little changed.

IMPRESSION:
1. There are multiple areas of abnormal deep white matter
signal changes present consistent with demyelinating process.
Three minute areas of enhancement are noted with two on the left
and one in the region of the splenium probably reflecting sites
of active plaque disease. These are new since the last exam.


2. A very prominent site of active plaque disease noted
on the last study has significantly diminished in size and is
not active on the current exam.
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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Old 05-19-2008, 07:37 PM #92
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Quote:
Originally Posted by Quixotic1 View Post
Oh, my. So, I saw his cousin. They're in the same office. Interesting they are the same. The one who could have had me on DMDs two years earlier! Do you know that they are the son and nephew of the actual doctor on whom the movie (The Doctor) was based? All about the need compassion in physicians.
I didn't know that! But that's odd, because for some reason I have always associated his waiting room with that movie. I have a feeling that maybe there was a poster for the movie in there. But I don't know that for sure. All I know is that when I think about myself sitting (that one time) in his waiting room, I associated it with the movie with William Hurt.

My PCP, when I told her I didn't want to go back to him because he wouldn't talk to me, referred me to another neurologist in that office (not the cousin). But the scheduler said they don't let people switch doctors within the office. So I got a referral elsewhere.

I'm sending you a PM.

Nancy T.
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Old 05-19-2008, 09:26 PM #93
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I agree with you 100%. Members of an MS support group helped me find a new practice that was more responsive and compassionate.


Quote:
Originally Posted by Quixotic1 View Post
Cherie and all: About talking to patients. I am a believer in attending MS support groups and asking people directly what they think of the neuros around. You will get very pointed and candid opinions about who the stinkers are and who is smart, a good listener and compassionate. I'm even willing to forgo compassionate if I have a smart, good listener with the intent to treat me the best he knows how.

Quix
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Old 05-19-2008, 09:49 PM #94
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Just want to say thank you to Cherie, and Quixotoc1 for all the links and discussions.

The title does say lesions and symptoms so here goes:

I have a .7cm not mm lesion on my hypothalamus, and from what I have read this is a bad location. It may have been why my feet got so cold with my first symtpms a few months ago, that I had to come home and put them on a heating pad.

I was wearing boots and angora/cashmere/wool socks everyday, and my work area floor is warmed by the pipes that heat a pool in the building.

It might be why I suddenly lost my appetite and was losing 2 lbs a week without trying (former clinical dietitian), for weeks.

Is this enough of a change to jump to Ty? I could not tolerate Betaseron in the long run. I was shocked when my neuro told me this is what I should try next. I have read some scary things about lesions and the hypothalamus and I am newly dx with no prior hx like most folks.
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Old 05-22-2008, 08:24 PM #95
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Originally Posted by volada View Post
and i am confused, disappointed and somewhat hopeful--so i will go back and try to glean more info from this thread...basically i seem to have more "hopefully small" spots but it is still "more" than i wanted. [/INDENT]
Hi, Volada, sorry to get back to you late. I got all wrapped up in discussing the McDonald Criteria.

I have a couple things to say. One it is really not important that you understand the specifics of the MRI report, though I would be glad to translate some for you.

What is important is that it is somewhat better in a couple places and not much worse in others. You started on Avonex just 2 months ago, right? The Interferons and Copaxone are not going to change the symptoms that you have. What we hope they do is prevent new lesions from forming and slow the disability (though actual slowing of accumulation of disability has not yet been shown with Copaxone).

Certainly they cannot do anything for a few to several months after you start them. So, having new symptoms and new lesions at this point is nothing you should be disappointed about.

As far as being confused and hopeful both of those are the norm at this stage after your diagnosis. Most psychologists will tell you that it takes upwards of a year to fully absorb a life-altering thing like a diagnosis of MS. You went directly from symptoms to proper work-up to diagnosis to weekly intramuscular injections. I'm sure the whole thing has seemed sometimes surreal.

May I ask how old you are? With the therapies that are here and on the horizon most pwMS can hope to live near their expected lives, punctuated with interruptions.

I hope you can use this forum for a place to vent, ask questions, play, gain hope and realize that the weird randomness that you go through has already been enjoyed by someone else who can tell you about it. Also, if you find that you are cycling between emotions and reactions to the new member of the house you are normal. Just absorbing the news can make you alternately sad, mystified, angry, and curious.

The disease itself is also known for wreaking havoc with the emotions. Mood swings, called emotional lability, are very common. So is unexpected irritability. If you have a tendency for depression, that can be worsened by the disease itself and also by the Interferon.

How are you doing on the Avonex? I completed a year on it this month.

Did you have a specific question about your MRI?

Quix (Dx RRMS, 03/07, Avonex 05/07)
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Old 05-22-2008, 08:35 PM #96
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Quote:
Originally Posted by starfish View Post
Just want to say thank you to Cherie, and Quixotoc1 for all the links and discussions.

The title does say lesions and symptoms so here goes:

I have a .7cm not mm lesion on my hypothalamus, and from what I have read this is a bad location. It may have been why my feet got so cold with my first symtpms a few months ago, that I had to come home and put them on a heating pad.

I was wearing boots and angora/cashmere/wool socks everyday, and my work area floor is warmed by the pipes that heat a pool in the building.

It might be why I suddenly lost my appetite and was losing 2 lbs a week without trying (former clinical dietitian), for weeks.

Is this enough of a change to jump to Ty? I could not tolerate Betaseron in the long run. I was shocked when my neuro told me this is what I should try next. I have read some scary things about lesions and the hypothalamus and I am newly dx with no prior hx like most folks.
Hi, Starfish, I'm not sure I can be of a whole lot of help. You are right about the location of the lesion. The brainstem, pons, hypothalamus, are not great places to have lesions. Specifically the hypothalamus houses a lot of the regulatory functions in the body. It is quite possible that this is why you can get your feet warm, and why you lost your appetite.

Is this a new lesion? Is it growing?

I guess, even with the answers to those questions, I cannot tell you the answer. The Tysabri would not be expected to heal the 7mm lesion you have. We could only hope that it holds further growth at bay and reduces new ones.

Is it too much of a jump? I can't tell you that. It is one of the choices for the next jump. The other one is Novantrone, followed possibly by Rebif. Does your Neuro think you have entered or have been in a progressive phase? Either by MRI lesion increases or by symptoms?

What was your problem with Betaseron? My neuro said that it was his least favorite because of its high incidence of side effects and its much higher incidence of neutralizing antibodies. Not knowing your history I can't offer much and, in reality I don't know much about the medication part of MS yet.

I hope you see this and that I hear from you.

Quix
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Old 05-23-2008, 01:41 AM #97
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Quote:
Originally Posted by Quixotic1 View Post
Hi, Starfish, I'm not sure I can be of a whole lot of help. You are right about the location of the lesion. The brainstem, pons, hypothalamus, are not great places to have lesions. Specifically the hypothalamus houses a lot of the regulatory functions in the body. It is quite possible that this is why you can get your feet warm, and why you lost your appetite.

Is this a new lesion? Is it growing?

I guess, even with the answers to those questions, I cannot tell you the answer. The Tysabri would not be expected to heal the 7mm lesion you have. We could only hope that it holds further growth at bay and reduces new ones.

Is it too much of a jump? I can't tell you that. It is one of the choices for the next jump. The other one is Novantrone, followed possibly by Rebif. Does your Neuro think you have entered or have been in a progressive phase? Either by MRI lesion increases or by symptoms?

What was your problem with Betaseron? My neuro said that it was his least favorite because of its high incidence of side effects and its much higher incidence of neutralizing antibodies. Not knowing your history I can't offer much and, in reality I don't know much about the medication part of MS yet.

I hope you see this and that I hear from you.

Quix
Quixoti1, thank you for your response. It is a new lesion. It is the largest one I have at 7 cm. There were other smaller lesions that appeared that I did not have a year ago, all in my brain. The report does not quantify them.

My C- MRI was not active. No changes.

I did have a 3 stressful events happen, one on top of the other, like a perfect storm, when I felt my first set of numbness and tingles in January.

Yes, I had quite a few side effects. Unable to sleep well or nap (Ambien Cr until I started sleep walking and eating), anxiety, skin rashes, increased muscle pain ( went away 2 days off Beta), fatigue, sick every 6 weeks with sore throats and upper respiratiory infections. Felt like I was not going to be able to work much longer. My thinking was not very clear.

My mom said I was aging too fast, right before her eyes, and she is 81! I am 51 but even my neuro said I look 35. (Don't feel it)

Had a gait study yesterday, I am at 90 out of 100.

Off Beta, I feel like superwoman, no muscle pain, skin rashes gone, stayed well for 4 months, sleep better and can nap again. I feel like I have my brain back and can think better.

I get tingles on a regular basis, on my scalp, and from the waist down.

I was hoping to just ride it out, do yoga, increase omega 3s, decrease cholesterol to help BBB, etc. However, I can't ignore that hypothalamus lesion.

Your posts are great for cerebral stimulation that I don't find in other forums!
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Old 05-23-2008, 01:59 AM #98
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Starfish - Would you clarify. Is it a .7cm lesion (your first post) or a 7cm lesion? (7cm is almost 3 inches long!)

Quix
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Old 05-23-2008, 03:02 PM #99
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Quitoxic1, sorry, thank goodness a typo, .7 cm. I know 2.54 cm = an inch so roughly a 1/3 of an inch.

Looked at a brain diagram today at my VEP exam and found the hypothalamus to be very small. I like to visualize things so I have a better understanding.
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Old 05-24-2008, 09:28 AM #100
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Wink thanks so much for your insight!

Quote:
Originally Posted by Quixotic1 View Post
Hi, Volada, sorry to get back to you late. I got all wrapped up in discussing the McDonald Criteria.

I have a couple things to say. One it is really not important that you understand the specifics of the MRI report, though I would be glad to translate some for you.

What is important is that it is somewhat better in a couple places and not much worse in others. You started on Avonex just 2 months ago, right? The Interferons and Copaxone are not going to change the symptoms that you have. What we hope they do is prevent new lesions from forming and slow the disability (though actual slowing of accumulation of disability has not yet been shown with Copaxone).

Certainly they cannot do anything for a few to several months after you start them. So, having new symptoms and new lesions at this point is nothing you should be disappointed about.

As far as being confused and hopeful both of those are the norm at this stage after your diagnosis. Most psychologists will tell you that it takes upwards of a year to fully absorb a life-altering thing like a diagnosis of MS. You went directly from symptoms to proper work-up to diagnosis to weekly intramuscular injections. I'm sure the whole thing has seemed sometimes surreal.

May I ask how old you are? With the therapies that are here and on the horizon most pwMS can hope to live near their expected lives, punctuated with interruptions.

I hope you can use this forum for a place to vent, ask questions, play, gain hope and realize that the weird randomness that you go through has already been enjoyed by someone else who can tell you about it. Also, if you find that you are cycling between emotions and reactions to the new member of the house you are normal. Just absorbing the news can make you alternately sad, mystified, angry, and curious.

The disease itself is also known for wreaking havoc with the emotions. Mood swings, called emotional lability, are very common. So is unexpected irritability. If you have a tendency for depression, that can be worsened by the disease itself and also by the Interferon.

How are you doing on the Avonex? I completed a year on it this month.

Did you have a specific question about your MRI?

Quix (Dx RRMS, 03/07, Avonex 05/07)
thanks for your information--i am quite political and work in congressional affairs so i did feel somewhat like a complainer/whiner after the news broke about senator kennedy during my big panic over "dawson's finger's" and the other details of my 2nd MRI...i can't contemplate how difficult it must be to face the news of "malignant tumor" so that pulled me out of my funk--i do know some of his current and former staffers so it was really super sad news....

I see my neuro on the 29th so it is good to have your info as a starting place for my discussion with him I am "youngish" (40 is the new 30--right!???) so I have a long future to look forward to with my two kids and husband. I am thinking about counseling/therapy but just can't contemplate where i would find the time/energy as i work full time in a stressful job...I have found this forum immensely comforting an helpful even though i can't log on as much as i would like..

avonex is surprising getting mildly better--just had my 11th dose last night and the yucky chills, pains aches aren't as bad this a.m. as they have been in the past.

one great by-product of this yuckiness is that a friend at work is married to a woman who has had ms since 91...so it has been helpful to have her input and experiences as "real-time" guidance...serious fatigue is my killer symptom which i am learning to manage by giving up stuff and managing my time...neuro has suggested a fatigue med but not sure i want to take another med????? thanks again for your insight...surreal does describe it--i had lunch with a good friend who is celebrating her five year--cancer free anniversary after a mascetomy and reconstruction---we talked what i find interesting about the way we ms'er are sometimes described as "chronic sufferer's" yet cancer "victims" are known as "survivor's". it is always good to laugh, cry and just have good friends to talk with--whether they are "virtual" or live!

how long have you had ms? sorry--if i missed it in an earlier post--i will go back and try to read more--i am still learning the navigate this disease and this website!
thanks again and take care, Mary (aka volada)
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
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