Lilred924
06-23-2008, 04:12 PM
How long does it take to develop MS? Had an MRI a little over two years ago and it was clear?
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MSNik
06-23-2008, 04:24 PM
MRIs can change day to day...you said you have had one..was it only of the brain or of the brain/spine..and what part of the spine? Was it done with contrast or not? Contrast sometimes picks up lesions which are too small to see otherwise..
MRIs are the first place that most Neuro's start..however, there are other tests which should be done to rule out or dx MS...evoked potentials, spinal taps, even optical tests are sometimes done. Not everyone will show lesions on an MRI (although most do).
If you have reasons to think you might have MS, you should see a Neuro every 6 months or so to evaluate any changes...an MS specialist would be your best bet, but any Neuro who is treating MS patients will do for now.
Good luck.
Nikki
MRIs are the first place that most Neuro's start..however, there are other tests which should be done to rule out or dx MS...evoked potentials, spinal taps, even optical tests are sometimes done. Not everyone will show lesions on an MRI (although most do).
If you have reasons to think you might have MS, you should see a Neuro every 6 months or so to evaluate any changes...an MS specialist would be your best bet, but any Neuro who is treating MS patients will do for now.
Good luck.
Nikki
Lilred924
06-23-2008, 04:59 PM
Thank you so much for responding. The first time I thought I had MS I went through a series of tests to discover that my discs had slipped from my TMJ (the bone that connects the jaw to the skull) which causes SO many problems, or at least has the potential too. My MRI at that time was perfectly normal.
The past four or five days, it started in my right leg, tingling, partically falling asleep, then off and on in my right arm. My teeth and jaw did that as well but I'm used to that because it does it when I clench to much and then goes into healing when I relax.
I'm have been under a great deal of stress. I got a CT Scan done the other day when I had what the hospital described as a "hyperventiliation" because I got all numb and such in my arms and chest and back of neck. I have an appt with the neurologist in the morning so we'll see. I have no history of it in my family, but the symptoms fit pretty well. It is worse in the morning but it has never made it so I couldn't use my leg or arm. Just tingling and hot/cold.
The past four or five days, it started in my right leg, tingling, partically falling asleep, then off and on in my right arm. My teeth and jaw did that as well but I'm used to that because it does it when I clench to much and then goes into healing when I relax.
I'm have been under a great deal of stress. I got a CT Scan done the other day when I had what the hospital described as a "hyperventiliation" because I got all numb and such in my arms and chest and back of neck. I have an appt with the neurologist in the morning so we'll see. I have no history of it in my family, but the symptoms fit pretty well. It is worse in the morning but it has never made it so I couldn't use my leg or arm. Just tingling and hot/cold.
Lilred924
06-23-2008, 05:14 PM
Oh and it was only of the brain. All I had of my neck was an x-ray
MSJayhawk
06-23-2008, 05:20 PM
MS can run in a family, BUT it is most often found in people with no history of MS. I do not know your age or your health, but there are a myriad of possible causes that will need to be reviewed before a diagnosis (Parkinson's, Lyme, ..........). If you have MS, it is unknown what the definitive cause or when you start to get it. That part of MS has remained elusive since the first case of MS was recorded hundreds of years ago.
When I look back on my own life, I think my symptoms started 4-5 years prior to the "DUH" symptoms. I excused my early symptoms as being clumsiness and poor coordination. Would an early detection have changed my life? No. It is important going into this NOT to blame yourself. Pity parties are to be avoided and no invitations are necessary. The only pity party you should attend is for the demise of MS. Until that day, stay positive and keep on keeping on. Life does not end with MS.
When I look back on my own life, I think my symptoms started 4-5 years prior to the "DUH" symptoms. I excused my early symptoms as being clumsiness and poor coordination. Would an early detection have changed my life? No. It is important going into this NOT to blame yourself. Pity parties are to be avoided and no invitations are necessary. The only pity party you should attend is for the demise of MS. Until that day, stay positive and keep on keeping on. Life does not end with MS.
Lilred924
06-23-2008, 06:37 PM
So let me ask you if a question if I can. My symptoms, numbness etc are much more noticable when I'm at rest. I mean, not just sitting or laying or anything in particular. But when I'm walking or running around with my dog they are not as noticable at all, but when I stop and relax just walking around the house or watching tv, when I wake up in the morning they are more noticable. They are definitly more noticable first thing in the morning. Is this normal for MS or does it really vary that much with each individual? Will it help if I continue to work out? I'm sure I will ask the neurologist these questions tomorrow but my mind is consumed with this right now and any answers/opinions help.
Lilred924
06-23-2008, 06:42 PM
So let me ask you if a question if I can. My symptoms, numbness etc are much more noticable when I'm at rest. I mean, not just sitting or laying or anything in particular. But when I'm walking or running around with my dog they are not as noticable at all, but when I stop and relax just walking around the house or watching tv, when I wake up in the morning they are more noticable. They are definitly more noticable first thing in the morning. Is this normal for MS or does it really vary that much with each individual? Will it help if I continue to work out? I'm sure I will ask the neurologist these questions tomorrow but my mind is consumed with this right now and any answers/opinions help.
MSJayhawk
06-23-2008, 07:13 PM
When our bodies are busy, we are more likely to lose focus on what our body is telling us. At rest, our mind is able to "listen" to our body. Sometimes the "DUH" symptom will become apparent due to the progress of the disease. I liken it to whacking the mule on the rear end to get its attention! LOL, at least for me it took a big "DUH" to tell me something was wrong.
Even now, if I am not careful, I can forget to "listen" until I sit down. I also have my service dog who is able to alert me when I am having problems. I guess he can listen better than I can!!
Even now, if I am not careful, I can forget to "listen" until I sit down. I also have my service dog who is able to alert me when I am having problems. I guess he can listen better than I can!!
Snoopy61
06-23-2008, 08:04 PM
MS does not have a time frame. Some people wait years for a diagnosis, some get a diagnosis fairly quickly and some are diagnosed with something else.
There are approximately 100 other disorders/diseases that mimic MS.
Numbness (for me) happens regardless if I am active or not.
There are approximately 100 other disorders/diseases that mimic MS.
Numbness (for me) happens regardless if I am active or not.
taosdaphne
06-23-2008, 08:52 PM
I wa diagnosed about a year ago, but the MS speciaist thinks I've had it 15-20 years, progressing very slowly, for whic I'm grateful.
Nenu
06-23-2008, 08:56 PM
When our bodies are busy, we are more likely to lose focus on what our body is telling us. At rest, our mind is able to "listen" to our body. Sometimes the "DUH" symptom will become apparent due to the progress of the disease. I liken it to whacking the mule on the rear end to get its attention! LOL, at least for me it took a big "DUH" to tell me something was wrong.
Even now, if I am not careful, I can forget to "listen" until I sit down. I also have my service dog who is able to alert me when I am having problems. I guess he can listen better than I can!!
Dogs are beautiful creatures aren't they Jayhawk? :) Such great companions!
Even now, if I am not careful, I can forget to "listen" until I sit down. I also have my service dog who is able to alert me when I am having problems. I guess he can listen better than I can!!
Dogs are beautiful creatures aren't they Jayhawk? :) Such great companions!
MSJayhawk
06-23-2008, 10:51 PM
Dogs are beautiful creatures aren't they Jayhawk? :) Such great companions!
I truly concur; dogs love unconditionally. While the world may judge you for your disability, your dog only sees a companion. I am often indebted for my service dog's assistance and concern. I think I would be lost without him.
I truly concur; dogs love unconditionally. While the world may judge you for your disability, your dog only sees a companion. I am often indebted for my service dog's assistance and concern. I think I would be lost without him.
Canadian gal
06-23-2008, 11:04 PM
It used to be that the only time I noticed the numbness/tingling was when I was physically stressed; from walking, running, or as the day wore on and I got tired. Now that there is more permanent damage in the spine, the day-to-day numbness seems most obvious after laying or sitting in certain positions, for relatively short (1 - 3 hrs) periods of time.
The funny thing is that the numbness is at it's best after a good night's sleep, where I've been laying for several hours. Why it bothers me when I lay for 2 hrs, but doesn't when I lay for 6 hrs. . . I don't know. :confused: Doesn't seem to be any rhyme or reason.
Is it possible that you are particularly anxious when you are not busy doing something?
Cherie
The funny thing is that the numbness is at it's best after a good night's sleep, where I've been laying for several hours. Why it bothers me when I lay for 2 hrs, but doesn't when I lay for 6 hrs. . . I don't know. :confused: Doesn't seem to be any rhyme or reason.
Is it possible that you are particularly anxious when you are not busy doing something?
Cherie
maxmadd
06-24-2008, 09:17 AM
Hi,
everyone is different but it took about 7 years after first symtoms of MS for the docs to diagnose me. Not all tests were pos. at that time. When numbness returned all MRI's and LP were pos. I am thankful for the 7 symptom free years I had in between. :)
everyone is different but it took about 7 years after first symtoms of MS for the docs to diagnose me. Not all tests were pos. at that time. When numbness returned all MRI's and LP were pos. I am thankful for the 7 symptom free years I had in between. :)
mhiggin1
06-24-2008, 02:14 PM
I'm new to the site and have the same question. I've had 4 bouts of optic neuritis on the last year and a half, with no positive tests for neither MS nor Devic's. I was on Avonex for 4 months, but the flulike side effects never subsided and I got off of it, only to experience another episode of optic neuritis and the lovely cocktail of steroids. Without a positive MS diagnosis, I'm hesitant to endure weekly sickness caused by the interferons, but the reactive steroid treatments aren't fun either. I feel like a pufferfish for a month! Is there anyone out there also in this catch 22?
Nenu
06-24-2008, 03:04 PM
I'm new to the site and have the same question. I've had 4 bouts of optic neuritis on the last year and a half, with no positive tests for neither MS nor Devic's. I was on Avonex for 4 months, but the flulike side effects never subsided and I got off of it, only to experience another episode of optic neuritis and the lovely cocktail of steroids. Without a positive MS diagnosis, I'm hesitant to endure weekly sickness caused by the interferons, but the reactive steroid treatments aren't fun either. I feel like a pufferfish for a month! Is there anyone out there also in this catch 22?
Welcome to the site/family :)
I'm quite surprised to hear you have not had a positive MS diagnosis, however you were placed on Avonex regardless!
I suggest starting a new thread with this question. Those who can better offer advice to you, or share their own experiences, will be more likely to notice it that way. :)
Did you talk to your neuro/doctor regarding other treatment options since you had such problems with Avonex?
Welcome to the site/family :)
I'm quite surprised to hear you have not had a positive MS diagnosis, however you were placed on Avonex regardless!
I suggest starting a new thread with this question. Those who can better offer advice to you, or share their own experiences, will be more likely to notice it that way. :)
Did you talk to your neuro/doctor regarding other treatment options since you had such problems with Avonex?
MSNik
06-24-2008, 04:04 PM
I too, question why anyone would put you on Avonex without a positive MS diagnosis..that doesnt follow protocol..
Have you seen an MS SPecialist? I know there are many in your part of the world..I would defintaely think the time has come to consult one.
As for the interferon side effects, they dont last forever- and quite possibly Copaxone would be a better choice for you, since it is not an interferon and doesnt have the same side effects...most interferons (rebif, avonex and betaseron) the side effects only last 6-8 hours and only for a few months...
But you shouldnt be on any of them without being positive for MS...so please continue to get tested! See a good MS doc and let us know how you are.
Have you seen an MS SPecialist? I know there are many in your part of the world..I would defintaely think the time has come to consult one.
As for the interferon side effects, they dont last forever- and quite possibly Copaxone would be a better choice for you, since it is not an interferon and doesnt have the same side effects...most interferons (rebif, avonex and betaseron) the side effects only last 6-8 hours and only for a few months...
But you shouldnt be on any of them without being positive for MS...so please continue to get tested! See a good MS doc and let us know how you are.
mhiggin1
06-24-2008, 04:28 PM
Thank you MSNik and Nenu for the response. I have talked to my Neuro and he suggested Copaxone, however, I am hesitant to do it without a positive diagnosis. The decision to start on Avonex arose from my treatment at the Mayo, so I didn't question it. 4 months later I was still running 104+ degree fevers, so I felt this drug wasn't right for me. In the meantime, I continue to get regular MRI's and I'm sure more lumbar punctures to come.
Right now, I'm doing fine and hope both of you are the same. Thanks:D
Right now, I'm doing fine and hope both of you are the same. Thanks:D
Snoopy61
06-24-2008, 04:30 PM
I'm new to the site and have the same question. I've had 4 bouts of optic neuritis on the last year and a half, with no positive tests for neither MS nor Devic's. I was on Avonex for 4 months, but the flulike side effects never subsided and I got off of it, only to experience another episode of optic neuritis and the lovely cocktail of steroids. Without a positive MS diagnosis, I'm hesitant to endure weekly sickness caused by the interferons, but the reactive steroid treatments aren't fun either. I feel like a pufferfish for a month! Is there anyone out there also in this catch 22?
mhiggin, there are causes of Optic Neuritis other than MS or Devics:
http://www.mayoclinic.com/health/optic-neuritis/DS00882/DSECTION=causes
If you were tested for Devics have you also had a cervical spine MRI?
The Disease Modifying Drugs such as Avonex have been prescribed for those with Clinically Isolated Syndrome (CIS) or those who are probable/possible MS but do not meet the McDonald Criteria. This is not the case for everyone with CIS or those who are probable/possible, it's up to the neuro
However, in your case I am suprised Avonex was prescribed since you have no positive testing other than confirming you have/had optic neuritis.
mhiggin, there are causes of Optic Neuritis other than MS or Devics:
http://www.mayoclinic.com/health/optic-neuritis/DS00882/DSECTION=causes
If you were tested for Devics have you also had a cervical spine MRI?
The Disease Modifying Drugs such as Avonex have been prescribed for those with Clinically Isolated Syndrome (CIS) or those who are probable/possible MS but do not meet the McDonald Criteria. This is not the case for everyone with CIS or those who are probable/possible, it's up to the neuro
However, in your case I am suprised Avonex was prescribed since you have no positive testing other than confirming you have/had optic neuritis.
Nenu
06-24-2008, 04:33 PM
Thank you MSNik and Nenu for the response. I have talked to my Neuro and he suggested Copaxone, however, I am hesitant to do it without a positive diagnosis. The decision to start on Avonex arose from my treatment at the Mayo, so I didn't question it. 4 months later I was still running 104+ degree fevers, so I felt this drug wasn't right for me. In the meantime, I continue to get regular MRI's and I'm sure more lumbar punctures to come.
Right now, I'm doing fine and hope both of you are the same. Thanks:D
I'm doing very well these days thanks! I am actually on Copaxone. It's my first drug, and so far so good. The 20ish minutes of discomfort after injecting make it a good choice in my opinion. Even if it is daily! ;)
Did your neurologists give you any idea as to why MS was ruled out? Usually us MS'ers hear a completely opposite tale of those who have come extremely close to a full diagnosis, only to be told to 'go and live life and wait for 6 months + and then we'll see if things have changed', without being recommended for a treatment (DMD).
Right now, I'm doing fine and hope both of you are the same. Thanks:D
I'm doing very well these days thanks! I am actually on Copaxone. It's my first drug, and so far so good. The 20ish minutes of discomfort after injecting make it a good choice in my opinion. Even if it is daily! ;)
Did your neurologists give you any idea as to why MS was ruled out? Usually us MS'ers hear a completely opposite tale of those who have come extremely close to a full diagnosis, only to be told to 'go and live life and wait for 6 months + and then we'll see if things have changed', without being recommended for a treatment (DMD).
Lilred924
06-24-2008, 07:29 PM
This site is great! and all of your responses have been wonderful. I went to the neurologist this morning and he did his examination of pricking and eyes etc. He felt as though my symptoms were not strong enough to be MS or other serious neurological problems - which happened last time I went a few years ago. He gave me some information on neck and back exercises but both of them hurt. I've been under a lot of stress and wondered if this was it. I'm still a bit concerned though. He told me to come back in a month and encouraged me to start working out again. I've lost a great amount of weight in the past and work out very well but with everything going on in my life I just stopped that.
I also have severe TMJ which can cause A LOT of strange symptoms, but never like this.
For the one who said you feel the tingling when you do strenuous activity, see I'm just the opposite. If I'm running around and such it's better, it's when I stop that it starts.
For the new individual, don't focus on it all the time. I found after I went to the doctor today I didn't focus on it as much and I felt better about myself. It was still there, but the stress about it was less. Try those neck exercises you can find online and back. It is a fact that muscle strain in your back can do a lot of pinching and changing of nerve activity. I'm praying at this point that is what I'm dealing with.
I will ask everyone though. Beyond the leg and arm, one of the things I deal with now is my upper lip tingling and teeth. I'm used to my face hurting because of the TMJ but this is a different type of tingling I'm not used too. Does anyone experience that? What do you think of what the neurologist said? Did anyone else get that advice the first they went to a neurologist when they suspected they might have MS?
I also have severe TMJ which can cause A LOT of strange symptoms, but never like this.
For the one who said you feel the tingling when you do strenuous activity, see I'm just the opposite. If I'm running around and such it's better, it's when I stop that it starts.
For the new individual, don't focus on it all the time. I found after I went to the doctor today I didn't focus on it as much and I felt better about myself. It was still there, but the stress about it was less. Try those neck exercises you can find online and back. It is a fact that muscle strain in your back can do a lot of pinching and changing of nerve activity. I'm praying at this point that is what I'm dealing with.
I will ask everyone though. Beyond the leg and arm, one of the things I deal with now is my upper lip tingling and teeth. I'm used to my face hurting because of the TMJ but this is a different type of tingling I'm not used too. Does anyone experience that? What do you think of what the neurologist said? Did anyone else get that advice the first they went to a neurologist when they suspected they might have MS?
Lilred924
06-24-2008, 07:34 PM
I hear copaxen is good. Not only that but it is the one MS injection that does not contain blood particles. I have a friend that is a Jehovah Witness that was eventually diagnosed with MS and that is the medication he could use. Me on the other hand would use whatever kept me the most functional and happy. But the good thing is that there are choices and you don't have to stick with what makes you sick.
Lilred924
06-24-2008, 07:36 PM
I'm suprised too, how many doctors have you seen for this? You should definitly get a few opinions. That is a very strong medication to be given with no positive diagnosis.
Lilred924
06-24-2008, 07:46 PM
I'm suprised too, how many doctors have you seen for this? You should definitly get a few opinions. That is a very strong medication to be given with no positive diagnosis.
Nenu
06-25-2008, 07:17 PM
I will ask everyone though. Beyond the leg and arm, one of the things I deal with now is my upper lip tingling and teeth. I'm used to my face hurting because of the TMJ but this is a different type of tingling I'm not used too. Does anyone experience that? What do you think of what the neurologist said? Did anyone else get that advice the first they went to a neurologist when they suspected they might have MS?
I had facial spasm + burning mouth/tingling sensation in my lip as well, and I had already been dx'ed with TMJ. My dentist got me into a neurologist. Complete waste of time this guy was. He said I was stressed and to go home and sleep! Uhhhhh....?
I honestly knew SOMETHING was wrong neurologically at this point, however I did not mention MS, because I didn't think it could possibly be MS at that point. It was only after having L'Hermittes Sign that I suspected MS personally.
I had facial spasm + burning mouth/tingling sensation in my lip as well, and I had already been dx'ed with TMJ. My dentist got me into a neurologist. Complete waste of time this guy was. He said I was stressed and to go home and sleep! Uhhhhh....?
I honestly knew SOMETHING was wrong neurologically at this point, however I did not mention MS, because I didn't think it could possibly be MS at that point. It was only after having L'Hermittes Sign that I suspected MS personally.
Nenu
06-25-2008, 07:19 PM
I hear copaxen is good. Not only that but it is the one MS injection that does not contain blood particles. I have a friend that is a Jehovah Witness that was eventually diagnosed with MS and that is the medication he could use. Me on the other hand would use whatever kept me the most functional and happy. But the good thing is that there are choices and you don't have to stick with what makes you sick.
:confused: The other DMDs contain these? That's news to me, but I haven't actually spent too much time looking into the other options because Copax is working in my case from what I can tell.
:confused: The other DMDs contain these? That's news to me, but I haven't actually spent too much time looking into the other options because Copax is working in my case from what I can tell.
Lilred924
06-27-2008, 11:35 AM
:confused: The other DMDs contain these? That's news to me, but I haven't actually spent too much time looking into the other options because Copax is working in my case from what I can tell.
Yes, some of them do. It makes sense if you think about it. You need some of that strength in blood cells to rebuild the mylar on your nerves.
Yes, some of them do. It makes sense if you think about it. You need some of that strength in blood cells to rebuild the mylar on your nerves.
Nenu
06-27-2008, 03:13 PM
Well I'm not a drug expert, but my understanding is that A, B and R work to prevent cells from crossing the barrier to the brain where the myelin is being damaged, versus C that interacts with the Tcells and works to hopefully change their interaction with the myelin.