Aa
New and seeking advise .
Hello to all .
My name is Vanda , and the first thing I would like to say is , thank all very much for your
input into this blog , so people like myself , who are fairly new to MS , can learn and identify symptoms .
So let's start again . My name is Vanda and I am 50 years old . In Oct of 2006 , I had very bad Vertigo . One minute I was fine , turn my head around and I could no longer keep balance .
I waited couple of days , and since I didn't feel much relief , I have decided to go to see the doctor . It was my new PCP ( my insurance was changed , and I was forced to changed a doctor ). After first examination and brief medical history , she ordered brain MRI .
During the follow up visit , the issue of MS was brought up . Of course denial was my first reaction .
MRI reading " - There is no evidence of midline shift of mass effect .
There is focal abnormal increased signal intensity on FLAIR and T2 wighted sequences within the left frontla subcortical wite matter . This forcal abnormal increased signal intensity measures approximately 1 cm in maximum dimension and appears to have well - defined margins . There is an additional focus of abnormal signal intensity adjacent to this lesion and there are multiple additional focal areas of abnormal increased signal intensity on FLAIR and T2 weighted sequences involving the periventricular and subcortical white matter . The axial image ...on the T2 weithed sequences demonstrates focal increased signal intensity that appears to radiate laterally from the region of the corpus callosum , and these findings are suggestive of possible demyelinating disease ." -
Shortly after I was referred to a Neuro , MS specialist . I had few weeks to prepaire my medical history . Only than have I learned , that over last 15 years I had many symptoms which could of been indicative of something going on .
To name few : hip pain , lower back pain , numb toe , weakness of my left arm , frequent UTI , sudden of depression , anxiety and unexplained periods of fatigue and insomnia .
Also , as documented in my medical record , I complained about left sided sunburn like sensation of my chest and abdomen .
To complete the list of all documented symptoms , I have to add tree incidents of vertigo , not including the last from October 2006 .
So far all the MS mimics have been excluded . No changes in spinal fluid ,
SSEP , VEP's and BAER didn't find anything abnormal .
No peripheral neuropathy .
Positive Romberg , Significant upbeating static positional nystagmus , neurogenic bladder .
My last MRI in May 2007 didn't show any changes , and no lesions in cervical or thoracic part of spine .
Since September of 2007 , I have noticed the existence of L'Hermitte sign .
But one very consistent symptom I have since over year is tingling of my tongue .
I hate to call my Neuro with every little new things , but the associate of my Neuro is not vey cool to say the least . ( Unless you have brain full of lesions like a night sky full of stars , you should not complain ).
I don't know what to do .
Should I call my neuro and tell about my L'Hermitte . I understand it is most likely a sign of cervical lesion .
Please advise me .
Sorry my post is so long and maybe little bit out of order .
Hope to hear from you guys .
Vanda
My name is Vanda , and the first thing I would like to say is , thank all very much for your
input into this blog , so people like myself , who are fairly new to MS , can learn and identify symptoms .
So let's start again . My name is Vanda and I am 50 years old . In Oct of 2006 , I had very bad Vertigo . One minute I was fine , turn my head around and I could no longer keep balance .
I waited couple of days , and since I didn't feel much relief , I have decided to go to see the doctor . It was my new PCP ( my insurance was changed , and I was forced to changed a doctor ). After first examination and brief medical history , she ordered brain MRI .
During the follow up visit , the issue of MS was brought up . Of course denial was my first reaction .
MRI reading " - There is no evidence of midline shift of mass effect .
There is focal abnormal increased signal intensity on FLAIR and T2 wighted sequences within the left frontla subcortical wite matter . This forcal abnormal increased signal intensity measures approximately 1 cm in maximum dimension and appears to have well - defined margins . There is an additional focus of abnormal signal intensity adjacent to this lesion and there are multiple additional focal areas of abnormal increased signal intensity on FLAIR and T2 weighted sequences involving the periventricular and subcortical white matter . The axial image ...on the T2 weithed sequences demonstrates focal increased signal intensity that appears to radiate laterally from the region of the corpus callosum , and these findings are suggestive of possible demyelinating disease ." -
Shortly after I was referred to a Neuro , MS specialist . I had few weeks to prepaire my medical history . Only than have I learned , that over last 15 years I had many symptoms which could of been indicative of something going on .
To name few : hip pain , lower back pain , numb toe , weakness of my left arm , frequent UTI , sudden of depression , anxiety and unexplained periods of fatigue and insomnia .
Also , as documented in my medical record , I complained about left sided sunburn like sensation of my chest and abdomen .
To complete the list of all documented symptoms , I have to add tree incidents of vertigo , not including the last from October 2006 .
So far all the MS mimics have been excluded . No changes in spinal fluid ,
SSEP , VEP's and BAER didn't find anything abnormal .
No peripheral neuropathy .
Positive Romberg , Significant upbeating static positional nystagmus , neurogenic bladder .
My last MRI in May 2007 didn't show any changes , and no lesions in cervical or thoracic part of spine .
Since September of 2007 , I have noticed the existence of L'Hermitte sign .
But one very consistent symptom I have since over year is tingling of my tongue .
I hate to call my Neuro with every little new things , but the associate of my Neuro is not vey cool to say the least . ( Unless you have brain full of lesions like a night sky full of stars , you should not complain ).
I don't know what to do .
Should I call my neuro and tell about my L'Hermitte . I understand it is most likely a sign of cervical lesion .
Please advise me .
Sorry my post is so long and maybe little bit out of order .
Hope to hear from you guys .
Vanda
I have read through all the posts. Welcome to the forum. Quix gives you so invaluable advice. Advice I hope that you follow up on.
I am total agreement that you SHOULD be on one of the Disease Modifying Drugs for MS. MS is always active, whether you are having distinct relapses and remissions.
I speak from experience, now at age 54, that I have been off of all DMDrugs for several years and have suffered the consequences. More lesions, more frequent attacks and little remissions, lasting only briefly. Please take Quix's advice and see about getting on one of these drugs post haste. It's vital to how the course of your MS will be in the future. I am convinced of their assistance in controlling this disease. Convinced.
Again welcome. I hope that you will post often. Please lean on us. You will soon realize that every person in the group, really CARES. They really do.
All the best,
Heather
I am total agreement that you SHOULD be on one of the Disease Modifying Drugs for MS. MS is always active, whether you are having distinct relapses and remissions.
I speak from experience, now at age 54, that I have been off of all DMDrugs for several years and have suffered the consequences. More lesions, more frequent attacks and little remissions, lasting only briefly. Please take Quix's advice and see about getting on one of these drugs post haste. It's vital to how the course of your MS will be in the future. I am convinced of their assistance in controlling this disease. Convinced.
Again welcome. I hope that you will post often. Please lean on us. You will soon realize that every person in the group, really CARES. They really do.
All the best,
Heather
Uhhh...Vanda, I have to tell you that your neurologist is going counter to ALL the current recommendations about treating MS. By saying that you are doing well and the meds would make you "sicker" he is showing that he does not have a clear understanding of the way MS does it's damage. They know very clearly that, MS continues to damage areas of the brain and spine whether or not there are symptoms. By holding off on the medications until you are sicker, he is ENSURING that you will indeed be sicker and may have neurologica damage and disability that could have been held off or prevented. By the time you know that you are sicker, you cannot recover the lost years. There are people (MS experts) that would consider this advice to you to be malpractice. If you understand all of this and you refuse the meds, that is your right.
The Disease Modifying Drugs have been shown to reduce the relapse rate and the Interferon-beta-1a meds (Avonex and Rebif) have now been shown statistically, but definitely to slow the rate of accumulation of disability.
He is likely presuming what is known by most MS specialists to be a fallacy. He is saying that you have "benign MS" because your symptoms are minimal. A person may go years seeming to have no disease at all, but having silent MS damage. Then they suddenly show with severe disability that can not be reversed. This is not a disease in which you can "read" the health of your own body. It is true that some people with MS have a lifetime of mild disease, but that course can only be determined at the end of it all. Exercise will help you maintain as much strength as possible, but it has NO effect on the progress of the disease.
You will likely hear from people here who had the meds withheld from them for various reasons and are angry and bitter of the time lost and the current level of permanent disability they now have to live with.
I think far less of your neuro having heard this opinion from him. I am very critical of neurologists who take chances with their patients or who are poorly educated on the disease and the indications for treatment. To hold off on the meds becasue you will likely be sicker is ridiculous. I have very little in the way of side effects from my med, and they are lessening each month. I've now said my piece.
AS far as the meds to relieve the symptoms of MS, it would always be your choice to use them or not. The CRAB are a totally different matter.
The stiffness you are describing may be a measure of spasticity. This is an increased tone in the muscles. If this is the case then yes, it does indeed, mean your MS is progressing. That is what the disease does. It progresses whether or not you can tell it. I would recommend that you ask your doctor for a referral to a neurologic physcial therapist for a thorough evaluation of your muscle strength and any sign of increased tone.
I hope this is useful info to you. If you have any questions about what I have said - ask away!
Quix
The Disease Modifying Drugs have been shown to reduce the relapse rate and the Interferon-beta-1a meds (Avonex and Rebif) have now been shown statistically, but definitely to slow the rate of accumulation of disability.
He is likely presuming what is known by most MS specialists to be a fallacy. He is saying that you have "benign MS" because your symptoms are minimal. A person may go years seeming to have no disease at all, but having silent MS damage. Then they suddenly show with severe disability that can not be reversed. This is not a disease in which you can "read" the health of your own body. It is true that some people with MS have a lifetime of mild disease, but that course can only be determined at the end of it all. Exercise will help you maintain as much strength as possible, but it has NO effect on the progress of the disease.
You will likely hear from people here who had the meds withheld from them for various reasons and are angry and bitter of the time lost and the current level of permanent disability they now have to live with.
I think far less of your neuro having heard this opinion from him. I am very critical of neurologists who take chances with their patients or who are poorly educated on the disease and the indications for treatment. To hold off on the meds becasue you will likely be sicker is ridiculous. I have very little in the way of side effects from my med, and they are lessening each month. I've now said my piece.
AS far as the meds to relieve the symptoms of MS, it would always be your choice to use them or not. The CRAB are a totally different matter.
The stiffness you are describing may be a measure of spasticity. This is an increased tone in the muscles. If this is the case then yes, it does indeed, mean your MS is progressing. That is what the disease does. It progresses whether or not you can tell it. I would recommend that you ask your doctor for a referral to a neurologic physcial therapist for a thorough evaluation of your muscle strength and any sign of increased tone.
I hope this is useful info to you. If you have any questions about what I have said - ask away!
Quix
Hi, Welcome to our Forum! I have to say that you had an incredibly smooth and quick - and, I suspect totally unnerving - road to diagnosis. It will surprise some of our member to know that it can be that easy. I don't mean to make light of it. It is a terrible thing to come to grips with. The MRI of your brain is a classic one indicating MS. And I would like the forum to note that your LP and evoked potentials were negative. We have discussing this recently here.
I think you are mainly asking about is : Should you report the L'Hermitte's sign? and, in general, when do you report new symptoms.
I may have missed it, but did you tell us whether you are on an MS med?
Your neuro's associate sounds like a compassionless jerk. Try to deal only with your own doc - speciify to the front desk that you wish the messages to go only to him and for him to answer your questions. If need be, mention the lack of interest of the associate to your doc.
You didn't report what the initial spinal MRI showed. If you didn't get one (???) I believe it should be done as a baseline. How else can you tell if there has been an increase in lesions suggesting that the medication is not holding. The L'Hermitte's IS indeed a sign of a cervical lesion, and likely a newer one since your diagnosis, given the new appearance of the symptom. The symptom is now 4 months old, so there is no hurry to inform him. You could call and tell him or you could write it up in a letter and send or fax it to him, but, yes, he needs to know.
For the most part, the appearance of a new lesion will not change your therapy. A major symptom or worsening of symptoms needs to be reported right away. Depending on their approach to treatment, many neuros will treat a suspected new relapse with a course of IV steroids.
My neuro wants to know of "all" new symptoms. And I really respect this guy. The forum will tell you, I am hard in judging neurologists. He won't necessarily do anything different with the knowledge of a new symptom, but he can't evaluate that possibility unless he knows about it.
My advice would be to fax an update periodically to your doc informing him of what has happened and what has resolved. He can use the info as he will, but it will at least be in your record.
It is not usual after the diagnosis of MS to suddenly look back and remember all the symptoms you ignored or wrote off to other stuff going (often) years back. It gives you an eery feeling doesn't it?
I hope you stay and join us for all the support and information and to answer the little things that you don't remember to ask during your doctor visits. Tell us a little about yourself. As long as we are here you will never need to go through anything alone.
I am a retired physician who participates here unofficially trying to help answer questions. We have people in all stages of MS worry, suspicion, work up, diagnosis and several long-timers. I was also older at diagnosis - 55 (last spring).
Quix
I think you are mainly asking about is : Should you report the L'Hermitte's sign? and, in general, when do you report new symptoms.
I may have missed it, but did you tell us whether you are on an MS med?
Your neuro's associate sounds like a compassionless jerk. Try to deal only with your own doc - speciify to the front desk that you wish the messages to go only to him and for him to answer your questions. If need be, mention the lack of interest of the associate to your doc.
You didn't report what the initial spinal MRI showed. If you didn't get one (???) I believe it should be done as a baseline. How else can you tell if there has been an increase in lesions suggesting that the medication is not holding. The L'Hermitte's IS indeed a sign of a cervical lesion, and likely a newer one since your diagnosis, given the new appearance of the symptom. The symptom is now 4 months old, so there is no hurry to inform him. You could call and tell him or you could write it up in a letter and send or fax it to him, but, yes, he needs to know.
For the most part, the appearance of a new lesion will not change your therapy. A major symptom or worsening of symptoms needs to be reported right away. Depending on their approach to treatment, many neuros will treat a suspected new relapse with a course of IV steroids.
My neuro wants to know of "all" new symptoms. And I really respect this guy. The forum will tell you, I am hard in judging neurologists. He won't necessarily do anything different with the knowledge of a new symptom, but he can't evaluate that possibility unless he knows about it.
My advice would be to fax an update periodically to your doc informing him of what has happened and what has resolved. He can use the info as he will, but it will at least be in your record.
It is not usual after the diagnosis of MS to suddenly look back and remember all the symptoms you ignored or wrote off to other stuff going (often) years back. It gives you an eery feeling doesn't it?
I hope you stay and join us for all the support and information and to answer the little things that you don't remember to ask during your doctor visits. Tell us a little about yourself. As long as we are here you will never need to go through anything alone.
I am a retired physician who participates here unofficially trying to help answer questions. We have people in all stages of MS worry, suspicion, work up, diagnosis and several long-timers. I was also older at diagnosis - 55 (last spring).
Quix
Thank you all for your responses . They are extremely valuable for me , since I am still learning about this disease .
I have to be honest with you all and say , that indeed I was puzzled little bit about my Neuro advise . As a matter of fact , his assosiate also asked me strait , quote : " but you don't want to inject yourself with medecine , right ? " - .
I really don't know what to think about both of them , but I know that for some unknown
reason they don't like to RX CRAB.
My Neuro even mentioned some new very promising drug ,which is currently worked on ,
and he stated this drug would be good for me .
Is there some special process of Rx these drugs , that some Neuro's dont like to do or what is going on .
I really don't have a clue about .
Please help me out to understand or give me some advise from this point on .
Currently , I suffer from insomnia , and last night I get to sleep after my fifth trip to the bathroom .
Thank you very much for your help , I am looking forward to hear from you all .
Vanda
I have to be honest with you all and say , that indeed I was puzzled little bit about my Neuro advise . As a matter of fact , his assosiate also asked me strait , quote : " but you don't want to inject yourself with medecine , right ? " - .
I really don't know what to think about both of them , but I know that for some unknown
reason they don't like to RX CRAB.
My Neuro even mentioned some new very promising drug ,which is currently worked on ,
and he stated this drug would be good for me .
Is there some special process of Rx these drugs , that some Neuro's dont like to do or what is going on .
I really don't have a clue about .
Please help me out to understand or give me some advise from this point on .
Currently , I suffer from insomnia , and last night I get to sleep after my fifth trip to the bathroom .
Thank you very much for your help , I am looking forward to hear from you all .
Vanda
Hi, I just read your last comment and like Heather and Quixotic suggested, the treatment is very important to us MSers. I too like yourself have been very hesitant about takeing any meds.
currently i am only takeing Betaseron (shot every other day), Baclofen as needed, I also get the stiff knees and also severe cramps in right leg and arm, and provigel for fatigue. I also take cod fish oil from the Health store.
My neuroligest who is also a ms specilest, believes you should treat ms quickly and aggresively.
I hope you can do some more research on the effectivness of treating ms quickly.
also like Quixotic stated, I have no side effect from my shots at this point and very few in the beginning. I have been on treatment for a little over a year now.
april
currently i am only takeing Betaseron (shot every other day), Baclofen as needed, I also get the stiff knees and also severe cramps in right leg and arm, and provigel for fatigue. I also take cod fish oil from the Health store.
My neuroligest who is also a ms specilest, believes you should treat ms quickly and aggresively.
I hope you can do some more research on the effectivness of treating ms quickly.
also like Quixotic stated, I have no side effect from my shots at this point and very few in the beginning. I have been on treatment for a little over a year now.
april
Thank you very much for your input .
During my last visit with my Neuro , I have been told I do indeed have MS , but my Neuro doesn't want me to go on CRAB yet . He knows I am still in pretty good shape , exercise daily , and he insists that side effects of DMD would make me more sick than I am with the course of my MS . But he also added , that if anything new shows up , we will try to stay on a top of it .
I got many RX from my Neuro and some free samples from my PCP , but I try to stay away from medecines as long as I can .
I take 40 mg of Citalopram a day , 1200 mg of Calcium and 800 units of Vit D to prevent osteoporosis . If any pain , I use up to 600 mg of Ibuprofen .
I do have access to Lyrica , Baclofen and some very potent pain medication , but I have not used them yet .
I think faxing new symptoms to my Neuro is pretty good idea .
I do have a journal of symptoms , which I write biweekly , unless some new things show up , than I describe tham as they come .
One other question I have for you guys is the pain and stiffness in my knees .
After sitting down for more than 15 - 20 min , my legs get very stiff , and I need a while to get them to work .
Is this normal ? Does it mean my MS is progressing ?
During my last visit with my Neuro , I have been told I do indeed have MS , but my Neuro doesn't want me to go on CRAB yet . He knows I am still in pretty good shape , exercise daily , and he insists that side effects of DMD would make me more sick than I am with the course of my MS . But he also added , that if anything new shows up , we will try to stay on a top of it .
I got many RX from my Neuro and some free samples from my PCP , but I try to stay away from medecines as long as I can .
I take 40 mg of Citalopram a day , 1200 mg of Calcium and 800 units of Vit D to prevent osteoporosis . If any pain , I use up to 600 mg of Ibuprofen .
I do have access to Lyrica , Baclofen and some very potent pain medication , but I have not used them yet .
I think faxing new symptoms to my Neuro is pretty good idea .
I do have a journal of symptoms , which I write biweekly , unless some new things show up , than I describe tham as they come .
One other question I have for you guys is the pain and stiffness in my knees .
After sitting down for more than 15 - 20 min , my legs get very stiff , and I need a while to get them to work .
Is this normal ? Does it mean my MS is progressing ?
Hi Vanda, sorry to here your going threw all of this but you deff. found a place were people understand.
I was Dx. last year with only brain lesions. no lesions on spine and neg. spinal tap. ny neuro said sometimes it takes awhile for the spinal to come back positive.
my neurological exam also showed very abnormal. hyperactive reflexs on right side of body, colonus in right foot and right wrist.
and my history of symptoms, all three he said were enough for him to feel comfortable to give me a deff. Dx. of ms.
when do you go back to your neuro?
april
I was Dx. last year with only brain lesions. no lesions on spine and neg. spinal tap. ny neuro said sometimes it takes awhile for the spinal to come back positive.
my neurological exam also showed very abnormal. hyperactive reflexs on right side of body, colonus in right foot and right wrist.
and my history of symptoms, all three he said were enough for him to feel comfortable to give me a deff. Dx. of ms.
when do you go back to your neuro?
april
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