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Neurology (Expert Forum)
Re: A question for CCF neuro "P" about response given to Sara on 11-14-98
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Re: A question for CCF neuro "P" about response given to Sara on 11-14-98
by CCF Neuro[P] MD RPS, Jan 01, 1995 12:00AM
Posted By CCF Neuro[P] MD, RPS on November 18, 1998 at 15:03:27:
In Reply to: A question for CCF neuro "P" about response given to Sara on 11-14-98 posted by L. Wahler on November 17, 1998 at 18:33:22:
Hi CCF Neuro [P] MD, RPS,
I am wondering how people with symptoms of MS, but no evidence of it can ask their doctors for one of the ABC drugs?
According to Sara, as she stated: "Through all this I was sent for an MRI (normal), then to a Neurologist who performed a LP;
this was also completely normal. The Neurologist did not want to perform the LP because he saw no clinical signs on
examination. He didn't feel anything would show up on an LP, and, he was right!"
She also stated, "I remembered, and began to link, some strange episodes from the last 10 years... hand tremor,
nocturia, and shocking pains in one arm,". With these two statements, how can MS continue to be the diagnosis? I am asking
these questions, particulary about where you advise Sara to start ************** for MS. I thought you had to have some
evidence of MS to start one of the ABC's due to their side effects. Is this not the protocol anymore? I am very interested in your
response. Thank you.
HERE IS SARA'S ARTICLE TO REFRESH YOUR MEMORY:
Hello,
I'm a 29 year old female who was recently diagnosed as possible or probable MS (not sure which, Neurologist said "MS is at
the top of the list"). My symptoms began eight months ago, two weeks after the birth of my second child. As a possibly related
aside...during this pregancy, I saw my primary physician for unexplained, persistant lymph node enlargement under my arms.
Around this same time, I also noticed a very strange proclivity for tilting my head to the right side... whatever!?
My symptoms began suddenly, but relatively minor, with intermittant dizziness, a right-heavy gait (felt like I was being pulled to
the right), and the slightest weakness in my lower right leg. Before the weakness set in, I had exactly one night of severe leg
tingling, but with no numbness.
Over the next month or so, symptoms added slowly, including right-sided facial and arm weakness. Through all this I was sent
for an MRI (normal), then to a Neurologist who performed a LP; this was also completely normal. The Neurologist did not want
to perform the LP because he saw no clinical signs on examination. He didn't feel anything would show up on an LP, and, he was
right!
So... I tried to forget about "it" for a while. However, "it" persisted. Next, a tremor presented, mostly in my hands, but
sometimes in my legs and head (!)
: In addition, blurred vision (may have had for a long time), shaky vision, lots of twitching (fasiculations?...please don't mention
ALS!! :), minor urinary problems, and minor walking problems (possibly from ataxia or balance, can't really tell what causes it).
With these new symptoms, I remembered, and began to link, some strange episodes from the last 10 years... hand tremor,
nocturia, and shocking pains in one arm.
Last week, my primary physician (he thinks I probably have MS) sent me to a new Neurologist for a "fresh start". She found
the following clinical signs: slight darkening of optic nerve in one eye, slight hyperreflexes, stiffness - all limbs and neck, and she
noticed that my right shoulder and hip are held slightly lower than the left. She said that this last observation is not consistent with
MS (?). However, she has requested evoked response, EKG (she found heart murmor... mitral valve prolapse syndrome
/dysautonomia(sp?)... the cause of all these symptoms? I can only pray!), along with other tests to rule out connective tissue
diseases.
Since this visit a week ago, I've noticed a drasitc increase in stiffness (spasticity?), with lots of achiness in all limbs. I still "look"
fairly normal when walking, but certainly don't feel normal. I'm now having trouble walking on stairs (new), my legs are generally
fatigued, and now they have some kind of banding sensation below the knee. I still exercise every day and I stretch constantly, but
nothing seems to help. However, some of my other symptoms are gone. Basically, through this 8 month ordeal, the only nearly
constant symptom has been the right leg weakness.
My questions: yes I do have a few; sorry for the book!
: Based on this 8 month history: (1) could this in any way still be RRMS, or does it sound progressive (secondary, primary,
relapsing?) MS. I've accepted MS as a possiblity, but not progressive MS at 29 (ouch!!) (2) would spasticity develop this soon
in progressive MS? Someone I know with this rotten disease said that it seems very soon to have this symptom after 8 months;
that progressive MS is usually slower, with a steady progression of a few deficits. (4) if this sounds like progressive MS, is the
prognosis rather bad.. cerebellar and brainstem involvement? (3) do you think this sounds like any other disease? I have some
other weird symptoms that are related/unrelated: slightly enlarged thyroid (normal levels), persistently enlarged lymph nodes
(though they have decreased a little), abscent monthly cycle (four four months... seeing GYN about this), and, my blood pressure
and heart rate keep going up and down like crazy (resting heart rate has been as high as 125-130 and as low as 65).
Blah, blah, blah... If you're still with me at this point, once again, I apologize for the length of this! Thanks in advance for your
response. This is a wonderful servce you're providing....
Dear Sara:
I am sorry to hear of your problems. The diagnosis of MS is still one of clinical acumen. The test of LP and MRI sure helps us,
but the fact of the matter it is the clinical symptoms that make the diagnosis. You have most of the complaints of some one with
MS. Not knowing if a second LP showed increased IgG synthesis or the presence of oligoclonal bands and kappa chains, nor
whether the MRI should areas of demyelination, I would say that your case sounds like MS. Whether it is relapsing remitting or
progressive is difficult for me to tell. Most patients with MS progress in their symptoms and it depends where the lesions are
whether the expression of symptoms is pronounced or not. If you experienced some bettering of symptoms and a time delay
between exacerbations then you would have relapsing remitting form of MS. The excerbations can be very close together that
would give you the illusion of progressive MS. There are new medications for MS, as you probably know. If the diagnosis is one
of MS, you
should not wait too long before starting medication (such as avonex or capaxone). MS has been described in childhood, so the
young age of 29 is in the realm of MS. Spasticity is usual in MS and that is because of the central nervous system demyelinating
process. It occurs in most, if not all MS. There are forms of MS that are extremely rapid and fatal in months, I DO NOT think
you have this type. Could this be any other type of disease? The answer is yes. Although it is unlikely that it is another disease, we
have seen mitochondrial disease look like this. There are several rare diseases that can give you symptoms like yours. I do not
think that you meet the symptoms of these other diseases. It is likely that the mitral valve prolapse is not part of MS, but the heart
rhythm problems might be related, we have seen this before. There are several clinical trials going on concerning MS, both of the
RR and progressive types (the trials with RR may be closed by now). You might look into whether you
might qualify for these. But by all means, start medication.
Sincerely,
CCF Neuro[P] MD, RPS
Dr. L. Wahler:
I am sorry for the mix-up, if you read that I wanted to start medication immediately regardless of the results of the second LP, the answer was maybe... depending on the results of her repeat LP and MRI. I would not start medication unless I examined her and felt that she had MS. As her LP and MRI were only 1 month after her symptoms started, at this point (seven months later) her test could be positive. If there are signs, meaning a positive MRI or LP then she needs to start medication. If the results are negative then likely I would pursue other entities that could give her symptoms. But our studies at the Clinic suggest that earlier is better in treating MS and if the tests are positive I would waste no time in initiating therapy.
If I read her letter wrong and she really didn't mean that after one month she had an MRI and LP and she meant that after eight months of symptoms she had an LP and MRI and they were negative then I would pursue other diseases. As far as the symptoms of 10 years ago, I am not sure if these are related and wouldn't immediately place these as the first symptoms of her current disease. They may be and if so then as we would pursue the evaluation of her problem, they would add more to the possibility of what the disease may be. As far as the side effect of the beta interferons, the new generation of beta interferons that are glycosylated, have much fewer side effects. But I would not start them unless by my clinical exam and gesalt would I start her on medications.
Let me know if you have further questions.
Sincerely,
CCF Neuro[P] MD, RPS
In Reply to: A question for CCF neuro "P" about response given to Sara on 11-14-98 posted by L. Wahler on November 17, 1998 at 18:33:22:
Hi CCF Neuro [P] MD, RPS,
I am wondering how people with symptoms of MS, but no evidence of it can ask their doctors for one of the ABC drugs?
According to Sara, as she stated: "Through all this I was sent for an MRI (normal), then to a Neurologist who performed a LP;
this was also completely normal. The Neurologist did not want to perform the LP because he saw no clinical signs on
examination. He didn't feel anything would show up on an LP, and, he was right!"
She also stated, "I remembered, and began to link, some strange episodes from the last 10 years... hand tremor,
nocturia, and shocking pains in one arm,". With these two statements, how can MS continue to be the diagnosis? I am asking
these questions, particulary about where you advise Sara to start ************** for MS. I thought you had to have some
evidence of MS to start one of the ABC's due to their side effects. Is this not the protocol anymore? I am very interested in your
response. Thank you.
HERE IS SARA'S ARTICLE TO REFRESH YOUR MEMORY:
Hello,
I'm a 29 year old female who was recently diagnosed as possible or probable MS (not sure which, Neurologist said "MS is at
the top of the list"). My symptoms began eight months ago, two weeks after the birth of my second child. As a possibly related
aside...during this pregancy, I saw my primary physician for unexplained, persistant lymph node enlargement under my arms.
Around this same time, I also noticed a very strange proclivity for tilting my head to the right side... whatever!?
My symptoms began suddenly, but relatively minor, with intermittant dizziness, a right-heavy gait (felt like I was being pulled to
the right), and the slightest weakness in my lower right leg. Before the weakness set in, I had exactly one night of severe leg
tingling, but with no numbness.
Over the next month or so, symptoms added slowly, including right-sided facial and arm weakness. Through all this I was sent
for an MRI (normal), then to a Neurologist who performed a LP; this was also completely normal. The Neurologist did not want
to perform the LP because he saw no clinical signs on examination. He didn't feel anything would show up on an LP, and, he was
right!
So... I tried to forget about "it" for a while. However, "it" persisted. Next, a tremor presented, mostly in my hands, but
sometimes in my legs and head (!)
: In addition, blurred vision (may have had for a long time), shaky vision, lots of twitching (fasiculations?...please don't mention
ALS!! :), minor urinary problems, and minor walking problems (possibly from ataxia or balance, can't really tell what causes it).
With these new symptoms, I remembered, and began to link, some strange episodes from the last 10 years... hand tremor,
nocturia, and shocking pains in one arm.
Last week, my primary physician (he thinks I probably have MS) sent me to a new Neurologist for a "fresh start". She found
the following clinical signs: slight darkening of optic nerve in one eye, slight hyperreflexes, stiffness - all limbs and neck, and she
noticed that my right shoulder and hip are held slightly lower than the left. She said that this last observation is not consistent with
MS (?). However, she has requested evoked response, EKG (she found heart murmor... mitral valve prolapse syndrome
/dysautonomia(sp?)... the cause of all these symptoms? I can only pray!), along with other tests to rule out connective tissue
diseases.
Since this visit a week ago, I've noticed a drasitc increase in stiffness (spasticity?), with lots of achiness in all limbs. I still "look"
fairly normal when walking, but certainly don't feel normal. I'm now having trouble walking on stairs (new), my legs are generally
fatigued, and now they have some kind of banding sensation below the knee. I still exercise every day and I stretch constantly, but
nothing seems to help. However, some of my other symptoms are gone. Basically, through this 8 month ordeal, the only nearly
constant symptom has been the right leg weakness.
My questions: yes I do have a few; sorry for the book!
: Based on this 8 month history: (1) could this in any way still be RRMS, or does it sound progressive (secondary, primary,
relapsing?) MS. I've accepted MS as a possiblity, but not progressive MS at 29 (ouch!!) (2) would spasticity develop this soon
in progressive MS? Someone I know with this rotten disease said that it seems very soon to have this symptom after 8 months;
that progressive MS is usually slower, with a steady progression of a few deficits. (4) if this sounds like progressive MS, is the
prognosis rather bad.. cerebellar and brainstem involvement? (3) do you think this sounds like any other disease? I have some
other weird symptoms that are related/unrelated: slightly enlarged thyroid (normal levels), persistently enlarged lymph nodes
(though they have decreased a little), abscent monthly cycle (four four months... seeing GYN about this), and, my blood pressure
and heart rate keep going up and down like crazy (resting heart rate has been as high as 125-130 and as low as 65).
Blah, blah, blah... If you're still with me at this point, once again, I apologize for the length of this! Thanks in advance for your
response. This is a wonderful servce you're providing....
Dear Sara:
I am sorry to hear of your problems. The diagnosis of MS is still one of clinical acumen. The test of LP and MRI sure helps us,
but the fact of the matter it is the clinical symptoms that make the diagnosis. You have most of the complaints of some one with
MS. Not knowing if a second LP showed increased IgG synthesis or the presence of oligoclonal bands and kappa chains, nor
whether the MRI should areas of demyelination, I would say that your case sounds like MS. Whether it is relapsing remitting or
progressive is difficult for me to tell. Most patients with MS progress in their symptoms and it depends where the lesions are
whether the expression of symptoms is pronounced or not. If you experienced some bettering of symptoms and a time delay
between exacerbations then you would have relapsing remitting form of MS. The excerbations can be very close together that
would give you the illusion of progressive MS. There are new medications for MS, as you probably know. If the diagnosis is one
of MS, you
should not wait too long before starting medication (such as avonex or capaxone). MS has been described in childhood, so the
young age of 29 is in the realm of MS. Spasticity is usual in MS and that is because of the central nervous system demyelinating
process. It occurs in most, if not all MS. There are forms of MS that are extremely rapid and fatal in months, I DO NOT think
you have this type. Could this be any other type of disease? The answer is yes. Although it is unlikely that it is another disease, we
have seen mitochondrial disease look like this. There are several rare diseases that can give you symptoms like yours. I do not
think that you meet the symptoms of these other diseases. It is likely that the mitral valve prolapse is not part of MS, but the heart
rhythm problems might be related, we have seen this before. There are several clinical trials going on concerning MS, both of the
RR and progressive types (the trials with RR may be closed by now). You might look into whether you
might qualify for these. But by all means, start medication.
Sincerely,
CCF Neuro[P] MD, RPS
Dr. L. Wahler:
I am sorry for the mix-up, if you read that I wanted to start medication immediately regardless of the results of the second LP, the answer was maybe... depending on the results of her repeat LP and MRI. I would not start medication unless I examined her and felt that she had MS. As her LP and MRI were only 1 month after her symptoms started, at this point (seven months later) her test could be positive. If there are signs, meaning a positive MRI or LP then she needs to start medication. If the results are negative then likely I would pursue other entities that could give her symptoms. But our studies at the Clinic suggest that earlier is better in treating MS and if the tests are positive I would waste no time in initiating therapy.
If I read her letter wrong and she really didn't mean that after one month she had an MRI and LP and she meant that after eight months of symptoms she had an LP and MRI and they were negative then I would pursue other diseases. As far as the symptoms of 10 years ago, I am not sure if these are related and wouldn't immediately place these as the first symptoms of her current disease. They may be and if so then as we would pursue the evaluation of her problem, they would add more to the possibility of what the disease may be. As far as the side effect of the beta interferons, the new generation of beta interferons that are glycosylated, have much fewer side effects. But I would not start them unless by my clinical exam and gesalt would I start her on medications.
Let me know if you have further questions.
Sincerely,
CCF Neuro[P] MD, RPS
