izzybur34
04-20-2008, 12:05 AM
Hi everyone I am new to the boards and have had pain and fatigue for about 10 years. I was initially diagnosed with fibromyalgia and was given pain meds, which have allowed me to function with some normalcy. However, the severity of my symptoms keeps progressing and I also have flare ups, where the pain and fatigue will be so bad that the meds wont help. This can happen for a few hours to a few weeks.
Last year I saw another doc that swore I had lyme disease, though the tests were not conclusive and he sent me for an MRI of the brain because that would show indication of lyme infection. The MRI showed two lessions. To make a long story short, I stopped seeing that doctor after a year of being on antibiotics without getting better. My PCP then received the records and told me that the lesions could also be consistant with MS.
I just went to a neuro and had an MRI of the brain and cervical spine with contrast, which showed that the lessions had stayed the same. He said in his experience it is unlikely to be MS, but a LP would be needed to confirm that.
My question to you guys is: in your experience, are there people that have the LP even though the MRI is "normal". Do you think that going for the LP is worth it.
I would love to have a diagnosis and find out why I am always in pain and so tired. the only thing that has been positive in the gazillion tests that have been done was the EBV, which the neuro just put me on Valtrex for. He also gave me amantadine for the fatigue, which is not working. I also take tramadol for the pain and lyrica.
Sorry for the long post, any advice would be greatly appreciated.
Last year I saw another doc that swore I had lyme disease, though the tests were not conclusive and he sent me for an MRI of the brain because that would show indication of lyme infection. The MRI showed two lessions. To make a long story short, I stopped seeing that doctor after a year of being on antibiotics without getting better. My PCP then received the records and told me that the lesions could also be consistant with MS.
I just went to a neuro and had an MRI of the brain and cervical spine with contrast, which showed that the lessions had stayed the same. He said in his experience it is unlikely to be MS, but a LP would be needed to confirm that.
My question to you guys is: in your experience, are there people that have the LP even though the MRI is "normal". Do you think that going for the LP is worth it.
I would love to have a diagnosis and find out why I am always in pain and so tired. the only thing that has been positive in the gazillion tests that have been done was the EBV, which the neuro just put me on Valtrex for. He also gave me amantadine for the fatigue, which is not working. I also take tramadol for the pain and lyrica.
Sorry for the long post, any advice would be greatly appreciated.
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Bearygood
04-20-2008, 12:18 AM
Hi, izzy, and welcome. Just a few comments...
First, in the year's time since I have been dxed with MS I've seen people who have also been dxed although their initial dx was fibromyalgia. Regarding Lyme, it's also a very intricate disease and certainly not one antibiotic fits all. Don't know what type of doctor you saw but I hope it was an LLMD. For more info. on proper testing you can visit the Lyme board here -- there are many knowledgable people.
Lyme can mimic MS for sure and that's another thing I've seen. People who have been dxed with Lyme and come to find out they have MS AND vice versa. The lesions and sx can be very similar. That said, MS lesions usually have certain characteristics like shape and location. But, sometimes it can be tricky. There are definitely cases of atypical MS where it is NOT textbook. I know you said you saw a neuro but it might be a good idea to go to an MS specialist. Re: the lesions staying the same, that certainly is not reason unto itself to believe it's not MS. (And if it IS MS, that's a good thing -- that's what we all want, for our lesion load to remain stable.)
FYI, other things can cause lesions and because you mentioned fatigue you should know that one of them is a B12 deficiency. Don't know if you've ever been tested (or adequately tested) for that but if not, you should be.
To a large extent, an MS dx is one of exclusion. You do have to usually fit what's known as the McDonald Criteria for a formal dx but even then, all the other tests should be run to make sure it's not an MS mimic.
First, in the year's time since I have been dxed with MS I've seen people who have also been dxed although their initial dx was fibromyalgia. Regarding Lyme, it's also a very intricate disease and certainly not one antibiotic fits all. Don't know what type of doctor you saw but I hope it was an LLMD. For more info. on proper testing you can visit the Lyme board here -- there are many knowledgable people.
Lyme can mimic MS for sure and that's another thing I've seen. People who have been dxed with Lyme and come to find out they have MS AND vice versa. The lesions and sx can be very similar. That said, MS lesions usually have certain characteristics like shape and location. But, sometimes it can be tricky. There are definitely cases of atypical MS where it is NOT textbook. I know you said you saw a neuro but it might be a good idea to go to an MS specialist. Re: the lesions staying the same, that certainly is not reason unto itself to believe it's not MS. (And if it IS MS, that's a good thing -- that's what we all want, for our lesion load to remain stable.)
FYI, other things can cause lesions and because you mentioned fatigue you should know that one of them is a B12 deficiency. Don't know if you've ever been tested (or adequately tested) for that but if not, you should be.
To a large extent, an MS dx is one of exclusion. You do have to usually fit what's known as the McDonald Criteria for a formal dx but even then, all the other tests should be run to make sure it's not an MS mimic.
Bearygood
04-20-2008, 12:20 AM
Forgot to mention that not all MS patients will have a positive LP. For many, this is just not an easy disease to dx!
Bearygood
04-20-2008, 12:23 AM
...and, although it is not proven conclusively, it is believed by many that there is a connection between EBV and MS. They really don't know what causes MS and it might even turn out to be different things in different people, not just one cause. But, EBV is something that comes up often. That said, not everyone with EBV gets MS.
izzybur34
04-20-2008, 12:27 AM
Forgot to mention that not all MS patients will have a positive LP. For many, this is just not an easy disease to dx!
Thanks for your responses. The neuro I am seeing is an MS specialist at the MS center of New England. I have been tested for B12 (and about 13 dozen other things), but I am not sure what you mean by adequately.
So, if I have a normal MRI and a neative LP, where would they go from there?
Thanks for your responses. The neuro I am seeing is an MS specialist at the MS center of New England. I have been tested for B12 (and about 13 dozen other things), but I am not sure what you mean by adequately.
So, if I have a normal MRI and a neative LP, where would they go from there?
izzybur34
04-20-2008, 12:30 AM
...and, although it is not proven conclusively, it is believed by many that there is a connection between EBV and MS. They really don't know what causes MS and it might even turn out to be different things in different people, not just one cause. But, EBV is something that comes up often. That said, not everyone with EBV gets MS.
This is VERY interesting, I'll have to do more research on that. Do you have any articles, sites, etc?
This is VERY interesting, I'll have to do more research on that. Do you have any articles, sites, etc?
Bearygood
04-20-2008, 12:42 AM
You can do a search on this board for Mono and Epstein Barr (or EBV) to start but it's VERY easy to find stuff about it on the web. (We can't post sites here unless they're within guidelines which you can find in the FAQ section.) It's interesting for sure but unforunately, not conclusive. Personally, I DO believe that MS is more of a syndrome and we did NOT all get here the same way. I also believe that there's something to the "right" environment in the body and then a "trigger" of some kind. Kind of like being in the wrong place at the right time. ;)
I don't know a ton about B12 but I've heard that people who test okay by blood discover a deficiency through a urine MMA test. You should ask your doctor about that. Also, if your doctor will humor you, have your vitamin D levels tested. I don't want to make your head spin with all the theories of ways people might get or become more susceptible to getting MS but let's just say for now that even neuros are recommending that their MS patients take D3 (different than D2), even when there is NOT a clinical deficiency. BTW, a vitamin D deficiency can also cause fatigue.
Re: Lyme testing, not all labs OR doctors are the same. I sincerely recommend you posting about your situation on the Lyme board, just to cover all bases.
Re: your lesions, do you know why the doctor can't dx you? Again, doesn't sound like you meet the McDonald Criteria but you DO have lesions. Do you know if the characteristics of the lesions are consistent with MS? If so, you might want to get the LP. Unfortunately, for many it's a wait and see situation when dxing MS. There are people who have had sx for YEARS and still don't have lesions -- and no dx. Seriously, I tell my friends (the ones who know I have it!) that this is the most interesting disease you'd never want to get. ;)
I don't know a ton about B12 but I've heard that people who test okay by blood discover a deficiency through a urine MMA test. You should ask your doctor about that. Also, if your doctor will humor you, have your vitamin D levels tested. I don't want to make your head spin with all the theories of ways people might get or become more susceptible to getting MS but let's just say for now that even neuros are recommending that their MS patients take D3 (different than D2), even when there is NOT a clinical deficiency. BTW, a vitamin D deficiency can also cause fatigue.
Re: Lyme testing, not all labs OR doctors are the same. I sincerely recommend you posting about your situation on the Lyme board, just to cover all bases.
Re: your lesions, do you know why the doctor can't dx you? Again, doesn't sound like you meet the McDonald Criteria but you DO have lesions. Do you know if the characteristics of the lesions are consistent with MS? If so, you might want to get the LP. Unfortunately, for many it's a wait and see situation when dxing MS. There are people who have had sx for YEARS and still don't have lesions -- and no dx. Seriously, I tell my friends (the ones who know I have it!) that this is the most interesting disease you'd never want to get. ;)
Bearygood
04-20-2008, 12:44 AM
So, if I have a normal MRI and a neative LP, where would they go from there?
Okay, let's be clear though. With your lesions, you do NOT have a normal MRI -- it's just not abnormal enough for an MS dx. ;)
Okay, let's be clear though. With your lesions, you do NOT have a normal MRI -- it's just not abnormal enough for an MS dx. ;)
izzybur34
04-20-2008, 12:56 AM
Okay, let's be clear though. With your lesions, you do NOT have a normal MRI -- it's just not abnormal enough for an MS dx. ;)
Ok. I understand. I did a search on the web about EBV and MS and found tons of articles, I'm doing some reading. I'll also post in the lyme board tomorrow and see what they say.
I was almost tempted to ask my neuro to put me on the meds he would typically put an MS patient and see if there is improvement. I also believe that many of the modern illnesses are interconnected, specially when it comes to immune function.
I left it with him that I would take the Valtrex for the EBV for 3 months and take it from there, but the LP may be the way to go to satisfy my own doubts. I wonder if they can test for lyme and other things from the same sample.
Ok. I understand. I did a search on the web about EBV and MS and found tons of articles, I'm doing some reading. I'll also post in the lyme board tomorrow and see what they say.
I was almost tempted to ask my neuro to put me on the meds he would typically put an MS patient and see if there is improvement. I also believe that many of the modern illnesses are interconnected, specially when it comes to immune function.
I left it with him that I would take the Valtrex for the EBV for 3 months and take it from there, but the LP may be the way to go to satisfy my own doubts. I wonder if they can test for lyme and other things from the same sample.
izzybur34
04-20-2008, 01:28 AM
Okay, let's be clear though. With your lesions, you do NOT have a normal MRI -- it's just not abnormal enough for an MS dx. ;)
I think you have gotten me onto something here. I have just found several studies (through the university library) that links varicella-zoster virus to MS. The study found it active in 95% of patients during symptoms and 6% during remission. It so happens that I had varicella when I was a young adult and that was when my symtomps started showing up. It started with a stiff neck and shoulders and a mild back pain and it's been down hill from there.
I think you have gotten me onto something here. I have just found several studies (through the university library) that links varicella-zoster virus to MS. The study found it active in 95% of patients during symptoms and 6% during remission. It so happens that I had varicella when I was a young adult and that was when my symtomps started showing up. It started with a stiff neck and shoulders and a mild back pain and it's been down hill from there.
CateCatherine
04-20-2008, 09:02 AM
Izzy -
Are you familiar with the CFS/ ME syndrome?
It too causes all the neuro / muscular symptoms of MS. It also produces brain lesions on the MRI. The areas of sclerotic tissue ( white spots that show in the gray matter of the MRI) are normally a bit smaller, often in a different part of the brain, and for some people - much more numerous. There is a "punctate pattern" in many ME patients.
There is also documented demyelinization for some.
Quite frankly, M.E ( CF) can be so close to MS --it might as well be.
Many with ME had an initial MS dx based on symptons presentation and MRI pattern.
Also - FM and ME are very commonly co-morbid conditions. They tend to travel together ( like nuns. lol)
You may want to search for CFS/FM boards to get more information. I would post a few for you but am not sure that is allowed here. ( I read the rules, but I have some brain damage and do not remember certain things very well)
I have friends with CF( ME) who are and have been bedridden for years.
Like MS - it can have varying manifestations and severity per individuals.
LP is up to you. It took many, many years for the oligoclonal bands to appear for me.
BUT - o bands appear in other neruo conditions as well. Even severe inflammation from infection ( acute or reactivated) can cause a positive LP.
Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing.
Take care,
CC
Are you familiar with the CFS/ ME syndrome?
It too causes all the neuro / muscular symptoms of MS. It also produces brain lesions on the MRI. The areas of sclerotic tissue ( white spots that show in the gray matter of the MRI) are normally a bit smaller, often in a different part of the brain, and for some people - much more numerous. There is a "punctate pattern" in many ME patients.
There is also documented demyelinization for some.
Quite frankly, M.E ( CF) can be so close to MS --it might as well be.
Many with ME had an initial MS dx based on symptons presentation and MRI pattern.
Also - FM and ME are very commonly co-morbid conditions. They tend to travel together ( like nuns. lol)
You may want to search for CFS/FM boards to get more information. I would post a few for you but am not sure that is allowed here. ( I read the rules, but I have some brain damage and do not remember certain things very well)
I have friends with CF( ME) who are and have been bedridden for years.
Like MS - it can have varying manifestations and severity per individuals.
LP is up to you. It took many, many years for the oligoclonal bands to appear for me.
BUT - o bands appear in other neruo conditions as well. Even severe inflammation from infection ( acute or reactivated) can cause a positive LP.
Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing.
Take care,
CC
izzybur34
04-20-2008, 09:05 PM
cate: Thanks for your response. I never heard of the ME part of CFS, but I am very familiar with CFS. Like I said, I was first diagnosed with FMS and later on with Lyme (based on symptoms), although the tests showed "evidence of prior infection", but negative according to the current diagnosing criteria of 5 bands. I was on antibiotics for a year. Honestly, I am so tired of chasing after a diagnosis. I wish I could find a doctor who thinks outside the box and is willing to explore different routes. I feel like all the ones I have been to look at one way and then give up or get script happy. I know I may never be normal again, but I need to know what is wrong with me. Every way I look points me to something different. Sorry for venting:(
Izzy -
Are you familiar with the CFS/ ME syndrome?
It too causes all the neuro / muscular symptoms of MS. It also produces brain lesions on the MRI. The areas of sclerotic tissue ( white spots that show in the gray matter of the MRI) are normally a bit smaller, often in a different part of the brain, and for some people - much more numerous. There is a "punctate pattern" in many ME patients.
There is also documented demyelinization for some.
Quite frankly, M.E ( CF) can be so close to MS --it might as well be.
Many with ME had an initial MS dx based on symptons presentation and MRI pattern.
Also - FM and ME are very commonly co-morbid conditions. They tend to travel together ( like nuns. lol)
You may want to search for CFS/FM boards to get more information. I would post a few for you but am not sure that is allowed here. ( I read the rules, but I have some brain damage and do not remember certain things very well)
I have friends with CF( ME) who are and have been bedridden for years.
Like MS - it can have varying manifestations and severity per individuals.
LP is up to you. It took many, many years for the oligoclonal bands to appear for me.
BUT - o bands appear in other neruo conditions as well. Even severe inflammation from infection ( acute or reactivated) can cause a positive LP.
Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing.
Take care,
CC
Izzy -
Are you familiar with the CFS/ ME syndrome?
It too causes all the neuro / muscular symptoms of MS. It also produces brain lesions on the MRI. The areas of sclerotic tissue ( white spots that show in the gray matter of the MRI) are normally a bit smaller, often in a different part of the brain, and for some people - much more numerous. There is a "punctate pattern" in many ME patients.
There is also documented demyelinization for some.
Quite frankly, M.E ( CF) can be so close to MS --it might as well be.
Many with ME had an initial MS dx based on symptons presentation and MRI pattern.
Also - FM and ME are very commonly co-morbid conditions. They tend to travel together ( like nuns. lol)
You may want to search for CFS/FM boards to get more information. I would post a few for you but am not sure that is allowed here. ( I read the rules, but I have some brain damage and do not remember certain things very well)
I have friends with CF( ME) who are and have been bedridden for years.
Like MS - it can have varying manifestations and severity per individuals.
LP is up to you. It took many, many years for the oligoclonal bands to appear for me.
BUT - o bands appear in other neruo conditions as well. Even severe inflammation from infection ( acute or reactivated) can cause a positive LP.
Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing.
Take care,
CC
Bearygood
04-20-2008, 10:46 PM
Interesting. I'm not familiar with varicella but there are a few viruses that do come up that seem to have similar properties that are I've seen mentioned besides EBV. I have my theories about my own situation and while it doesn't make a difference in the end, I feel much better being educated. Hopefully one day the origin or originS will be found and I do believe it will make a big difference in how MS and other similar diseases are treated.
Re: treatment, most MS specialists will wait until there's enough clinical evidence but there are some some more aggressive doctors who will start patients on medication if it falls into the "probable" category. At this point it doesn't sound like you do fall there though -- and also, it's important to understand that the medications used to treat MS (not sx) are designed to slow progression, not alleviate sx. The different drugs seem to work for some but not others and even then, there is no way to absolutely prove that stable MRIs and fewer relapses are attributable to these drugs. It could just be the natural course of one's own MS. There are also many of us who have chosen to not take the available drugs -- it's a personal choice. Don't want to really get ahead of the game here but I wanted to respond to your query about asking your doctor to prescribe one of the drugs for MS.
I think you have gotten me onto something here. I have just found several studies (through the university library) that links varicella-zoster virus to MS. The study found it active in 95% of patients during symptoms and 6% during remission. It so happens that I had varicella when I was a young adult and that was when my symtomps started showing up. It started with a stiff neck and shoulders and a mild back pain and it's been down hill from there.
Re: treatment, most MS specialists will wait until there's enough clinical evidence but there are some some more aggressive doctors who will start patients on medication if it falls into the "probable" category. At this point it doesn't sound like you do fall there though -- and also, it's important to understand that the medications used to treat MS (not sx) are designed to slow progression, not alleviate sx. The different drugs seem to work for some but not others and even then, there is no way to absolutely prove that stable MRIs and fewer relapses are attributable to these drugs. It could just be the natural course of one's own MS. There are also many of us who have chosen to not take the available drugs -- it's a personal choice. Don't want to really get ahead of the game here but I wanted to respond to your query about asking your doctor to prescribe one of the drugs for MS.
I think you have gotten me onto something here. I have just found several studies (through the university library) that links varicella-zoster virus to MS. The study found it active in 95% of patients during symptoms and 6% during remission. It so happens that I had varicella when I was a young adult and that was when my symtomps started showing up. It started with a stiff neck and shoulders and a mild back pain and it's been down hill from there.
Nenu
04-21-2008, 12:26 AM
varicella-zoster appears to be the virus causing chicken pox in younger children, or shingles in adults. I had chicken pox twice as a child. Never had shingles, but since I had the pox twice, when I got itching/burning feelings on my right side torso, naturally I kept an eye out for rash to develop, thinking I was susceptible to shingles based on my history/level of stress I was under at the time. Luckily, that never manifested.
I also had Mono at 19. Go figure. I don't believe I had the best of immune systems growing up. Frequently sick with bronchitis and strep in various forms. Lots of antibiotics as a child for various things.
I also had Mono at 19. Go figure. I don't believe I had the best of immune systems growing up. Frequently sick with bronchitis and strep in various forms. Lots of antibiotics as a child for various things.
Bearygood
04-21-2008, 10:07 AM
Ah, makes sense. Chicken Pox is one of the conditions I've seen but mentioned as Herpes Zoster. The HZ conditions and EBV are the two viruses that seem to come up most often as possibly being related to MS.
johndo555
04-21-2008, 10:19 AM
CateCatherine: You said "Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing." That's interesting. Do you mean to say that bands are more likely to be found in the fluid during an exacerbation ? Do doctors mention this ?
I'm actually thinking of waiting for a relapse to get my LP, because I too have a negative MRI.
Thanks!
J
I'm actually thinking of waiting for a relapse to get my LP, because I too have a negative MRI.
Thanks!
J
Nenu
04-21-2008, 11:20 AM
Morning Beary :) Hope you've been well!
I do wonder how many of us MS'ers had mono (I know most of the population carries the virus dormant) earlier in life... I was sick as a dog with mono when I went through it. Came out of nowhere. Granted, I wasn't sleeping well/eating well and it was going around my high school (where I lived, we were required to do grade 13 at the time... prep for University, so I was 19 years of age when I got ill). I went on a road trip and felt really ill all the way there. Got there, and realized my throat felt horrendous. Had a friend investigate and they went "WOW". My tonsils were covered in white gunk! :( I spent the entire trip in bed sleeping. I was in such pain (muscles).
I ended up bed ridden for 2 weeks, on Tylenol 3. My mother had to carry me to the bathroom. Eventually I recovered, but it was the worst pain I had felt in my life, and I can still honestly say nothing has beat that on pain factor.
I do wonder how many of us MS'ers had mono (I know most of the population carries the virus dormant) earlier in life... I was sick as a dog with mono when I went through it. Came out of nowhere. Granted, I wasn't sleeping well/eating well and it was going around my high school (where I lived, we were required to do grade 13 at the time... prep for University, so I was 19 years of age when I got ill). I went on a road trip and felt really ill all the way there. Got there, and realized my throat felt horrendous. Had a friend investigate and they went "WOW". My tonsils were covered in white gunk! :( I spent the entire trip in bed sleeping. I was in such pain (muscles).
I ended up bed ridden for 2 weeks, on Tylenol 3. My mother had to carry me to the bathroom. Eventually I recovered, but it was the worst pain I had felt in my life, and I can still honestly say nothing has beat that on pain factor.
Bearygood
04-21-2008, 01:21 PM
Nenu, You'll find that a lot in the message board population have had mono/EBV, etc. I'm almost positive that I started a thread on this board myself not after I was first dxed and came here. (If you want to see, go to the search function and look for topics started by me.)
The main theories re: the origin of MS are viral, bacterial, genetic and environmental agents. Personally, I believe there might well be validity in ALL of these theories. I really don't believe we all got here the same way. Also believe in pre-disposition, either genetic or induced by one of these other factors and then something acts as a trigger. Could be a bit like the chicken or the egg though -- which came first? ;)
The main theories re: the origin of MS are viral, bacterial, genetic and environmental agents. Personally, I believe there might well be validity in ALL of these theories. I really don't believe we all got here the same way. Also believe in pre-disposition, either genetic or induced by one of these other factors and then something acts as a trigger. Could be a bit like the chicken or the egg though -- which came first? ;)
izzybur34
04-24-2008, 12:04 AM
Well, funny (not really), I have started a flare up as of yesterday. Not sure if being on Valtrex has trigered it or the fact that I just went back to work. I have been in awful pain since yesterday and nothing makes it go away. I'm calling the Neuro tomorrow and asking to send me to the LP as soon as possible. I am asking him to test the fluid for everything possible. Including the EBV, VZV, lyme, levels of neurotransmitters and anything else he can think of. Any suggestions?
CateCatherine: You said "Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing." That's interesting. Do you mean to say that bands are more likely to be found in the fluid during an exacerbation ? Do doctors mention this ?
I'm actually thinking of waiting for a relapse to get my LP, because I too have a negative MRI.
Thanks!
J
CateCatherine: You said "Having the LP is up to you - but I do suggest ( based on experience) that you have it done when you are in an exacerbation. It makes for better and more viable testing." That's interesting. Do you mean to say that bands are more likely to be found in the fluid during an exacerbation ? Do doctors mention this ?
I'm actually thinking of waiting for a relapse to get my LP, because I too have a negative MRI.
Thanks!
J