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"In-active or Benign MS"
Dear Dr. Kantor:
I was diagnosed with MS in 1993 but my MS has been in "remission" until I began having problems in 2006. In Oct. 2006 I presented with an ice pick type of pain in my right temple with my left eyelid drooping. I was told that it was a relapse of my MS and was put on IV steroids/weaning prednisone which alleviated my symptoms until Feb. 2007. In Feb. 2007 I had another occurence of the "ice pick pain and drooping eyelid" but was diagnosed by a different Neurologist with Paratrigeminal Neuralgia (Raeders Syndrome) and was again treated with IV Steroids/weaning Prednisone. The symptoms of the Raeder's Syndrome for which I tried several medications including Tegretol, Neurontin, Topamax and Lyrica with no resolution of the Raeder's Syndrome symptoms.
In July 2007 I began to have symptoms of MS such as leg spasms, vertical double vision, numbness and tingling in the left extremities, difficulty with speech, swallowing issues, chronic fatigue as well as the continuing pain of Raeder's. An MRI was done in Nov. 2007 and I was told to seek a second opinion. I did seek a second opinion with my original Neurologist and she stated that "your MS is still in remission and there is no need for me to see you any longer...you can be followed by your gp and I wish you luck with your "in-active" MS.
I have been seen by a Rheumatologist who discerned that my vitamin D level was very low. I have had a neuro-psych consult, was diagnosed with depression and advised to start on an anti-depressant. Currently I have few complaints other than my eye sight deteriorating although my Opthamologist states that it is a neurological problem not my eyes. I have been told so many times that my disease is "in-active or benign" but there has been no other explanation found for my symptoms. In your experience, can MS be "in-active or benign" and require no follow up or possible DMD treatment?
Sincerely,
Rena705
I was diagnosed with MS in 1993 but my MS has been in "remission" until I began having problems in 2006. In Oct. 2006 I presented with an ice pick type of pain in my right temple with my left eyelid drooping. I was told that it was a relapse of my MS and was put on IV steroids/weaning prednisone which alleviated my symptoms until Feb. 2007. In Feb. 2007 I had another occurence of the "ice pick pain and drooping eyelid" but was diagnosed by a different Neurologist with Paratrigeminal Neuralgia (Raeders Syndrome) and was again treated with IV Steroids/weaning Prednisone. The symptoms of the Raeder's Syndrome for which I tried several medications including Tegretol, Neurontin, Topamax and Lyrica with no resolution of the Raeder's Syndrome symptoms.
In July 2007 I began to have symptoms of MS such as leg spasms, vertical double vision, numbness and tingling in the left extremities, difficulty with speech, swallowing issues, chronic fatigue as well as the continuing pain of Raeder's. An MRI was done in Nov. 2007 and I was told to seek a second opinion. I did seek a second opinion with my original Neurologist and she stated that "your MS is still in remission and there is no need for me to see you any longer...you can be followed by your gp and I wish you luck with your "in-active" MS.
I have been seen by a Rheumatologist who discerned that my vitamin D level was very low. I have had a neuro-psych consult, was diagnosed with depression and advised to start on an anti-depressant. Currently I have few complaints other than my eye sight deteriorating although my Opthamologist states that it is a neurological problem not my eyes. I have been told so many times that my disease is "in-active or benign" but there has been no other explanation found for my symptoms. In your experience, can MS be "in-active or benign" and require no follow up or possible DMD treatment?
Sincerely,
Rena705
MEDICAL PROFESSIONAL
I believe that "benign" MS is only a diagnosis you can make after a person has livd their entire MS life.
It doesn't sound like nothing is going on -- in fact your MS symptoms sound active.
1. I think you should see an MS specialist.
2. I feel that you should highly consider being on a DMD.
Ms should be treated, not left to simmer and get worse.
It doesn't sound like nothing is going on -- in fact your MS symptoms sound active.
1. I think you should see an MS specialist.
2. I feel that you should highly consider being on a DMD.
Ms should be treated, not left to simmer and get worse.
MEDICAL PROFESSIONAL
MRI is just a test and all tests have false positives and false negatives.
I do not understand why the trigemnial neuralgia is not from the MS too.
No matter what I think a DMD should be started -- but of course I am not the neurologist in this case.
I do not understand why the trigemnial neuralgia is not from the MS too.
No matter what I think a DMD should be started -- but of course I am not the neurologist in this case.
I very much appreciate this answer of yours. I have also maintained on the MS Forum that "Benign MS" can be determined only in hindsight. We still get too many people who have been declared to have benign disease and often refused or discouraged from getting a DMD. Sometimes the assessment of "Benign MS" is made based on the appearance of the MRI which has few lesions or is not rapidly changing over time, yet the patient is very symptomatic and worsening.
In Rena's case her neurologist is the local MS Specialist. Her current symptoms are ignored because her MRI doesn't have enhancing lesions and there are no lesions "seen" to account for her new symptoms. This is why she is being denied a DMD. She also lives in Canada and has fewer options for which doctors she can use and whether she can "qualify" for the meds.
Would you be willing to make a statement as to whether you believe that there should be a visible MRI lesion to match each symptom - or whether there can be symptomatic lesions still too small for the resolution of the MRI?
Quix
In Rena's case her neurologist is the local MS Specialist. Her current symptoms are ignored because her MRI doesn't have enhancing lesions and there are no lesions "seen" to account for her new symptoms. This is why she is being denied a DMD. She also lives in Canada and has fewer options for which doctors she can use and whether she can "qualify" for the meds.
Would you be willing to make a statement as to whether you believe that there should be a visible MRI lesion to match each symptom - or whether there can be symptomatic lesions still too small for the resolution of the MRI?
Quix
MEDICAL PROFESSIONAL
This is obviously a very difficult question for me to answer without knowing you.
On the one hand I think you need a work-up because this is not necessarily MS, on the other hand you bring up the issues of finances.
This is a decision YOU have to make.
My suggestion, however, is that you see a neurologist -- this alone (without tests) shouldn't be terribly expensive. Neurology is an old profession and we can do a lot without expensive tests.
On the one hand I think you need a work-up because this is not necessarily MS, on the other hand you bring up the issues of finances.
This is a decision YOU have to make.
My suggestion, however, is that you see a neurologist -- this alone (without tests) shouldn't be terribly expensive. Neurology is an old profession and we can do a lot without expensive tests.
MEDICAL PROFESSIONAL
This is obviously a very difficult question for me to answer without knowing you.
On the one hand I think you need a work-up because this is not necessarily MS, on the other hand you bring up the issues of finances.
This is a decision YOU have to make.
My suggestion, however, is that you see a neurologist -- this alone (without tests) shouldn't be terribly expensive. Neurology is an old profession and we can do a lot without expensive tests.
On the one hand I think you need a work-up because this is not necessarily MS, on the other hand you bring up the issues of finances.
This is a decision YOU have to make.
My suggestion, however, is that you see a neurologist -- this alone (without tests) shouldn't be terribly expensive. Neurology is an old profession and we can do a lot without expensive tests.
Hello Dr. In 1985 I Started to get bad symtons of something wrong with my legs, I had a dull numbness in both of my legs drom the knee down. I was draging my left foot and often falling . I had a bad tingling and burning at the same time, It would much worse if their was any wind or a fan blowing on them. I went into hospital for a week and as far as I know they were checking for MS. after a few months the draging and clumsyness seemed to subside and I,ve just put up with the pain of it now for 24 years. My wife always tells me that when I sleep my rirht leg jumps and and jerks alot through the night. Its even woken me up many times. Now for the last month I,v been getting lots of pain combined with numbness and a burning tingling in my other leg. When I was first checked about this 24 years ago and got no results, I moved to Thailand and have been here ever since. I haven,t been able to see a Dr. here mainly becauses of finances, but I don,t know what to do? Is it something that that they can do to help me from getting worse or do I just try and persist on with putting up with the pain? I didn,t know anything about MS until just learning to surf the web. I read that many symptoms I have are the same as many MS sufferers. On reading some of your comments I felt your the first one I have talked about this. I am 58 years old now and am getting quite worried about this. What should I do? Find a MS Dr. and start going through alot of expensive test, or wait and see what else arrises? Any reply from you would be greatly appreaciated. Yours Truly Jim Currie,. My email address is ... jim_coconuts***@**** Thank you very much.
MEDICAL PROFESSIONAL
Hepatitis C can cause white matter spots and demyelination.
I am not saying that is what is causing this, but you should be fully worked up by your neurologist.
I am not saying that is what is causing this, but you should be fully worked up by your neurologist.
I am 50-years old, male, history of polydrug addiction, alcohol and solvent abuse. Since the age of 23 I have had perioids of symptoms that are like MS but probably not.
Horizontal double vision (I had an obvious episode of optic neuritis last year), parasthesias (my skin feels "fuzzy", especially during flare-ups), frequency of urination, illusiory finger "swelling", mood swings associated with flareups, cramps and muscular pains, muscular fatigue ditto, symptoms get worse with heat or stress.
But the syndrome is completely symmetrical, unlike MS, and I have never lost use of any part.
Vitamin D, fish oil, EPO, high doses of vitamin E, and astaxanthin seem to bring about steady improvement, and alpha-lipoic acid also helps. Resveratrol (which elevates oxidative stress inside BBB, I later learned) caused a bad flare-up, with stabbing muscle aches and optic neuritis. But I'm always vulnerable to stress or heat, only less so than I was. I have to learn to pace myself, but being a rock musician, that's not easy.
Is there a demyelinating syndrome that fits this profile?
Note that I am taking the supplements primarily for Hep C, with outstanding success in that regard. I thought the syndrome was part of the Hep C, but now that that no longer bothers me it is obviously serperate, plus I realise I've had it for much longer.
I have never been overweight, do not eat much sat fats any more. I have been drug-freeexcept for reducing dose of methadone since starting supplements for Hep C (made it easy indeed).
Horizontal double vision (I had an obvious episode of optic neuritis last year), parasthesias (my skin feels "fuzzy", especially during flare-ups), frequency of urination, illusiory finger "swelling", mood swings associated with flareups, cramps and muscular pains, muscular fatigue ditto, symptoms get worse with heat or stress.
But the syndrome is completely symmetrical, unlike MS, and I have never lost use of any part.
Vitamin D, fish oil, EPO, high doses of vitamin E, and astaxanthin seem to bring about steady improvement, and alpha-lipoic acid also helps. Resveratrol (which elevates oxidative stress inside BBB, I later learned) caused a bad flare-up, with stabbing muscle aches and optic neuritis. But I'm always vulnerable to stress or heat, only less so than I was. I have to learn to pace myself, but being a rock musician, that's not easy.
Is there a demyelinating syndrome that fits this profile?
Note that I am taking the supplements primarily for Hep C, with outstanding success in that regard. I thought the syndrome was part of the Hep C, but now that that no longer bothers me it is obviously serperate, plus I realise I've had it for much longer.
I have never been overweight, do not eat much sat fats any more. I have been drug-freeexcept for reducing dose of methadone since starting supplements for Hep C (made it easy indeed).
I have been diagnosed with Rheumatoid Arthritis/mixed connective tissue disease and secondary Sjogren's syndrome. I also have hypothyroidism. I have been treated for many years with Plaquenil twice daily. My rheumatologist has seen no need for methotrexate or any other treatment.
I finally had enough of numbness and tingling in my hands and feet. I have fallen and tripped quite a bit. Drop things and generally feel as if I'm "on the outside looking in" and out of sinc with the rest of the world. Also my short term memory has gotten very bad. My doc under much pressure ordered an MRI of the brain.
My blood pressure had risen last fall and I was put on Benicar. I thought my symptoms were because of the Benicar and was changed to dynacirc.
My MRI Impression is as follows:
Scattered foci of t2 prolongation involving both hemispheres as well as a small focus in the pons having a differential of demyelinating process vs. small vessel disease. Please correlate with signs and symtpoms. (the foci are in the white matter)
My PCP has indeed at this point decided to send me to a neurologist and I am awaiting an appointment.
I might add that I also have severe degenerative disc disease at C6-7, left foraminal stenosis at c-5-6. Reversal of normal cervical lordosis from C4-7 with severe degenerative disc disease at C6-7.
My husband is a chiropractor and I'm well aware of the disc disease, however my MRI scan of the brain does concern me.
Any comments will be appreciated. Thank you.
I finally had enough of numbness and tingling in my hands and feet. I have fallen and tripped quite a bit. Drop things and generally feel as if I'm "on the outside looking in" and out of sinc with the rest of the world. Also my short term memory has gotten very bad. My doc under much pressure ordered an MRI of the brain.
My blood pressure had risen last fall and I was put on Benicar. I thought my symptoms were because of the Benicar and was changed to dynacirc.
My MRI Impression is as follows:
Scattered foci of t2 prolongation involving both hemispheres as well as a small focus in the pons having a differential of demyelinating process vs. small vessel disease. Please correlate with signs and symtpoms. (the foci are in the white matter)
My PCP has indeed at this point decided to send me to a neurologist and I am awaiting an appointment.
I might add that I also have severe degenerative disc disease at C6-7, left foraminal stenosis at c-5-6. Reversal of normal cervical lordosis from C4-7 with severe degenerative disc disease at C6-7.
My husband is a chiropractor and I'm well aware of the disc disease, however my MRI scan of the brain does concern me.
Any comments will be appreciated. Thank you.
You bring up a few interesting points Dr. Kantor. At the time of diagnosis I was only given an in-office neurological examination and a CT Scan was not done until 2 months after the diagnosis of PN (Paratrigeminal Neuralgia). The CT Scan came back normal and I was not given an MRI for 9 months because the Neurologist I was seeing mistakenly assumed that the CT Scan I had done was an MRI and it wasn't until I had a severe attack of vertical double vision that he searched for the "MRI result" which was in fact never done and he finally ordered an MRI. When the results came back I was told by his secretary that "the doctor states that you indeed have MS and he advises that you should get a second opinion."
It was at this time that I went back to a Neurologist I had seen in that past and after a short neurological exam I was told that "your MS is in-active and you don't need to be followed up by a Neurologist any longer." So here I am...frustrated to no end, no answers to what is causing my symptoms but you have been a light at the end of my tunnel by verifying what I have come to learn over the last year and for that I am very grateful. Happy New Year to you Dr. Kantor and I hope the new year brings you and yours some wonderful things.
Sincerely,
Rena705
It was at this time that I went back to a Neurologist I had seen in that past and after a short neurological exam I was told that "your MS is in-active and you don't need to be followed up by a Neurologist any longer." So here I am...frustrated to no end, no answers to what is causing my symptoms but you have been a light at the end of my tunnel by verifying what I have come to learn over the last year and for that I am very grateful. Happy New Year to you Dr. Kantor and I hope the new year brings you and yours some wonderful things.
Sincerely,
Rena705
MEDICAL PROFESSIONAL
I am not sure that I can differentiate paratrigeminal from trigeminal neuralgia without seeing you as a patient. I do not know why this would not be trigeminal neuralgia (which is in the differential diagnosis of paratrigeminal neuralgia) and I am not sure why MS could not cause it.
I sure wish you WERE Rena's Neurologist. You would be a god-send to her life, by getting her on the DMD's that she should have been on long, long ago.
We all have been worried that Rena cannot seem to find a doctor in Canada that will put her on any treatment. As we know, MS is active all the time and the DMD's at least, give us some hope that we are slowing down the damage, done from MS.
I don't mean to speak for Rena, but what you have told her, at least gives her hope and the willingness to keep fighting for the treatment that she deserves.
Thank you Dr. Kantor.
Heather
We all have been worried that Rena cannot seem to find a doctor in Canada that will put her on any treatment. As we know, MS is active all the time and the DMD's at least, give us some hope that we are slowing down the damage, done from MS.
I don't mean to speak for Rena, but what you have told her, at least gives her hope and the willingness to keep fighting for the treatment that she deserves.
Thank you Dr. Kantor.
Heather
Dear Dr. Kantor:
I have been told that I have "Paratrigeminal Neuralgia" which differs from Trigeminal Neuralgia (which has been proven to be related to MS as far as I know). I was told that Paratrigeminal Neuralgia is not the same thing and is not related to MS. Can you expand on this a little as all of the data that I have read on Paratrigeminal Neuralgia points to the fact that it is not related to MS?
Sincerely,
Rena705
I have been told that I have "Paratrigeminal Neuralgia" which differs from Trigeminal Neuralgia (which has been proven to be related to MS as far as I know). I was told that Paratrigeminal Neuralgia is not the same thing and is not related to MS. Can you expand on this a little as all of the data that I have read on Paratrigeminal Neuralgia points to the fact that it is not related to MS?
Sincerely,
Rena705
I sincerely appreciate your responding to my query. Further to my previous question, I would also appreciate it if you could elaborate on the following:
Is it likely that all of these neurological symptoms like the Raeder's and the double vision are more likely due to some other disease process than my MS? Because I have not had enhancing lesions my neurologist maintains that my disease is inactive and that any symptoms must be due to something else, yet nothing else has been found. I would also like to add that I have been denied the Disease Modifying Drugs because my previous neurologist has stated that my disease is "in-active".
The last 2 years have been rather terrifying and now when I have, for example, double vision, the lack of care that I have received from the medical professionals only makes me doubt my own symptoms and therefore I tend to try to struggle through them when I could possibly not have them at all with some medical care.
Sincerely,
Rena705
Is it likely that all of these neurological symptoms like the Raeder's and the double vision are more likely due to some other disease process than my MS? Because I have not had enhancing lesions my neurologist maintains that my disease is inactive and that any symptoms must be due to something else, yet nothing else has been found. I would also like to add that I have been denied the Disease Modifying Drugs because my previous neurologist has stated that my disease is "in-active".
The last 2 years have been rather terrifying and now when I have, for example, double vision, the lack of care that I have received from the medical professionals only makes me doubt my own symptoms and therefore I tend to try to struggle through them when I could possibly not have them at all with some medical care.
Sincerely,
Rena705
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