shellyj
11-19-2007, 02:22 PM
I read somewhere on this board there aren't no dumb questions- so forgive me but I'm confussed.
If you can have MS w/o lesions & lesions don't cause your sx (if this is correct) then what are they & what causes them. Can lesions cause sx? Thanks to everyone who posts to this board. I have learned so much.
God bless,
Shelly
If you can have MS w/o lesions & lesions don't cause your sx (if this is correct) then what are they & what causes them. Can lesions cause sx? Thanks to everyone who posts to this board. I have learned so much.
God bless,
Shelly
Sponsor
Snoopy61
11-19-2007, 03:59 PM
Hi Shelly,
MS is a disease of the Central Nervous System (CNS) which is the brain, optic nerve and the spine. Nerves are protected by Myelin. MS damages the Myelin and causes it to "shed." We then have a mis-communication or mis-firing of nerve signals which causes the symptoms.
Lesions are a result of lost Myelin. The lesions show where there is damage to the nerves or where the Myelin has been lost. The brain can re-route arount damaged areas - to a point. This re-routing of nerve signals doesn't usually happen in the spine. My understanding - there just isn't enough room for re-routing to happen.
There are about 5% diagnosed with MS that do not have lesions. For those 5% I'm betting the lesions will show up sooner or later.
MS is a disease of the Central Nervous System (CNS) which is the brain, optic nerve and the spine. Nerves are protected by Myelin. MS damages the Myelin and causes it to "shed." We then have a mis-communication or mis-firing of nerve signals which causes the symptoms.
Lesions are a result of lost Myelin. The lesions show where there is damage to the nerves or where the Myelin has been lost. The brain can re-route arount damaged areas - to a point. This re-routing of nerve signals doesn't usually happen in the spine. My understanding - there just isn't enough room for re-routing to happen.
There are about 5% diagnosed with MS that do not have lesions. For those 5% I'm betting the lesions will show up sooner or later.
MSNik
11-19-2007, 04:02 PM
Hi Shelly. Snoopy gave you a great synopsis of what MS is and what lesions are...I wanted to add, think of lesions like scar tissue. It is caused (as she said) by the damage to the Myelin...wherever damage has occured, scar tissue or lesions will show on the MRI. IF the damage is actively occuring, the MRI with contrast will show as "lit up" and be more evident.
For those who do not have lesions showing, it is quite possible that eventually they will show up, but its also evident that many people who do not have lesions, do have Obands in their spinal fluid, which are found thru a spinal tap, or lumbar puncture (same thing) and can also dx MS.
Hope this helps..
nikki
For those who do not have lesions showing, it is quite possible that eventually they will show up, but its also evident that many people who do not have lesions, do have Obands in their spinal fluid, which are found thru a spinal tap, or lumbar puncture (same thing) and can also dx MS.
Hope this helps..
nikki
Snoopy61
11-19-2007, 04:13 PM
I wanted to add, think of lesions like scar tissue. nikki
I forgot about that, thanks Nikki.
Lesions are scars. Sclerosis = scaring = lesions
I forgot about that, thanks Nikki.
Lesions are scars. Sclerosis = scaring = lesions
MSNik
11-19-2007, 04:23 PM
One more MULTIPLE SCLEROSIS = many scars!
Hope this helps you, Shelly J. Let us know if you need more information!
Hope this helps you, Shelly J. Let us know if you need more information!
shellyj
11-19-2007, 04:36 PM
Thanks so much. I'm getting so frustrated trying to find out what is wrong with me & I've only been dealing with it for 3 months now. Any idea how long lesions take to show up? I appreciate you all.
MS for life
11-19-2007, 06:08 PM
Can you clarify on the spinal tap? I have had most every other test done and things are still inconclusive. I am headed to a second opinion and was wondering if I have lesions on my brain, would the spinal tap be more conclusive, and maybe I should suggest the one last test. I have had no changes within the last six months, however my symptoms have worsened. Mostly numbness (which has turned to dull pain at times) in my hands and feet, primarily on my left side. Thanks in advance. I don't mean to steal the thread, shellyj, just have always wondered on the spinal tap thing.
shellyj
11-19-2007, 06:51 PM
You ain't stealing nothing. I'm learning so much from all the posts. It really helps to know that I'm not alone in this battle that is making me crazy. My friends & family are starting to think it's all in my head. Anyway, ask away.
MSNik
11-19-2007, 07:23 PM
HI girls. First of all, its good to ask questions, and YES SHELLY, no question is dumb! This is a terrifying time as well as a frustrating time in both your lives. It wasnt that long ago that I was in your shoes, and my goal in this world, is to try to help others, the way I was helped (HERE) by giving back! So, both of you, ask away.
Shelly, you asked how long it takes for lesions to show up...thats not a science. It can take a very short time, or a very long time- for a very rare few, they never show up on MRIs....having an MRI with contrast usually helps the radiologist and neurologist pin point lesions quicker...in case you are unfamiliar with contrast; it is given at the same time as the MRI. They usually do a series of scans, and then they pull you out, inject a very tiny needle of contrasting fluid into your hand or arm (it doesnt hurt at all) and send you back into the machine for a few more scans....by using this, anything which might be brewing will GLOW on the slides, thus allowing very tiny or active lesions to show up...if you ever go for an MRI, you should request of the doctor to do it both with and without contrast. Time frame on what is going on with you....3 months isnt that long, although I know it FEELS like forever! Most docs will repeat things every 6 months until they have a firm dx....if you dont have a doctor thinking about repeating this in a few more months, request it of him/her. Talk to your doctor! Communication is the single most important tool you have in diagnosing any disease. Symtoms come and go, but keeping a journal of them, seeing your doctor regularly can make things happen quicker. You really dont want to wind up in the hospital with something serious going on in order to find out its an MS thing!
MS for life; a spinal tap will NOT tell you if you have lesions on your brain. Have you had the Brain MRI yet? You also want to have a spinal (specifically C spine) MRI as well , and again, as I explained above, with and without contrast. What a spinal tap will show you are Obands. Obands or Oligoclonal bands are found in spinal fluid (Sometimes). What they tell the doctor is that there is a production of anti-bodies being produced, usually because of an immune response to a non-specific antigen. In plain English, they shouldnt be there..and if they are, something is going on. Usually one of the few things which an Oband represents is MS in the spinal column. They can also represent certain brain infections, and meningitis; however those things present differently, meaning you wouldnt have typical MS symptoms. Im not sure where you are with your testing or what tests you have had done. If a doctor suggests having a spinal tap I would say do it. Ive done it twice, both times without incident, and both times to rule out first Lyme Disease and Meningitis (both of which they suspected) and the second time to check my Obands count. I do not show Obands...however, I have over 50 lesions on my brain! Sounds horrible, right? There is no connection between the number of lesions you have and how progressive your MS is; however the more lesions you have, the more likely you are to have more symtoms. I actually feel terrific these days and in the past year of being dx, and being on Rebif, have not had any additional symtoms or lesions! (yay Rebif).
I hope this helps both of you...
hugs to you both, and painfree days ahead. Try really hard to keep doctors appointments regularly and NOT to worry about this inbetween. I know its really tough, but worrying about it increases stress, which in turn increases symtoms and makes everything hurt! By trying really hard to give yourself a break and NOT think or DWeLL on this stuff, you honestly will feel better overall!
Nikki
Shelly, you asked how long it takes for lesions to show up...thats not a science. It can take a very short time, or a very long time- for a very rare few, they never show up on MRIs....having an MRI with contrast usually helps the radiologist and neurologist pin point lesions quicker...in case you are unfamiliar with contrast; it is given at the same time as the MRI. They usually do a series of scans, and then they pull you out, inject a very tiny needle of contrasting fluid into your hand or arm (it doesnt hurt at all) and send you back into the machine for a few more scans....by using this, anything which might be brewing will GLOW on the slides, thus allowing very tiny or active lesions to show up...if you ever go for an MRI, you should request of the doctor to do it both with and without contrast. Time frame on what is going on with you....3 months isnt that long, although I know it FEELS like forever! Most docs will repeat things every 6 months until they have a firm dx....if you dont have a doctor thinking about repeating this in a few more months, request it of him/her. Talk to your doctor! Communication is the single most important tool you have in diagnosing any disease. Symtoms come and go, but keeping a journal of them, seeing your doctor regularly can make things happen quicker. You really dont want to wind up in the hospital with something serious going on in order to find out its an MS thing!
MS for life; a spinal tap will NOT tell you if you have lesions on your brain. Have you had the Brain MRI yet? You also want to have a spinal (specifically C spine) MRI as well , and again, as I explained above, with and without contrast. What a spinal tap will show you are Obands. Obands or Oligoclonal bands are found in spinal fluid (Sometimes). What they tell the doctor is that there is a production of anti-bodies being produced, usually because of an immune response to a non-specific antigen. In plain English, they shouldnt be there..and if they are, something is going on. Usually one of the few things which an Oband represents is MS in the spinal column. They can also represent certain brain infections, and meningitis; however those things present differently, meaning you wouldnt have typical MS symptoms. Im not sure where you are with your testing or what tests you have had done. If a doctor suggests having a spinal tap I would say do it. Ive done it twice, both times without incident, and both times to rule out first Lyme Disease and Meningitis (both of which they suspected) and the second time to check my Obands count. I do not show Obands...however, I have over 50 lesions on my brain! Sounds horrible, right? There is no connection between the number of lesions you have and how progressive your MS is; however the more lesions you have, the more likely you are to have more symtoms. I actually feel terrific these days and in the past year of being dx, and being on Rebif, have not had any additional symtoms or lesions! (yay Rebif).
I hope this helps both of you...
hugs to you both, and painfree days ahead. Try really hard to keep doctors appointments regularly and NOT to worry about this inbetween. I know its really tough, but worrying about it increases stress, which in turn increases symtoms and makes everything hurt! By trying really hard to give yourself a break and NOT think or DWeLL on this stuff, you honestly will feel better overall!
Nikki
Bearygood
11-19-2007, 07:42 PM
Unfortunately, there's no exact science to when lesions show or don't show. Sometimes they're too small to be detectable which is why it's important to have MRIs done in good machines and in the case of brain MRIs, closed ones will be the most accurate.
MS, a positive LP could certainly aid in diagnosis, even in the absence of lesions. The NMSS has the 2005 update of the McDonald criteria (different scenarios for dxing MS, which most doctors go by) if you want to take a look.
MS, a positive LP could certainly aid in diagnosis, even in the absence of lesions. The NMSS has the 2005 update of the McDonald criteria (different scenarios for dxing MS, which most doctors go by) if you want to take a look.
MS for life
11-19-2007, 09:24 PM
Thanks for the quick response. Actually I had my first brain MRI six months ago, with contrast and it showed nine distinct lesions (counted by the neuro), then about two months later had the C-spine MRI, which showed no lesions. I just had my six month follow-up brain MRI with contrast, and according to the radiologist, he stated no change, but would still not rule out MS, among other things. The thing is my symptoms have gotten much worse with my hands and feet. They fall asleep up to my elbow and knees during the night and during the day they simply get so numb, that they feel dead (for lack of a better word) and when I walk, I feel like I am walking on a stub. Anyway, the Neurontin has helped after they upped it a couple of times, but I explained to my GP at my regular visit, I felt like I was masking something and was worried as to why it was getting worse. He did not feel it should be getting worse now that my APS is under control, so he is sending me out to the University for a second opinion. He also felt that my second MRI needed to be read by a neuro and not just a radiologist. My questions are answered on the spinal as I was wondering if it would help to suggest that. I will play the wait and see game (wait to see if he brings it up first and then act surprised and say yeah, whatever you think is necessary, or bring it up if he does not).
So, my appt. is next week and I hope to have a few more answers and that my body stops going out on me. Thanks again and good luck to shellyj, let us know how things go with your appointment.
So, my appt. is next week and I hope to have a few more answers and that my body stops going out on me. Thanks again and good luck to shellyj, let us know how things go with your appointment.
Bearygood
11-19-2007, 09:49 PM
MS for life, the neuro you saw noted the lesions but did not think they were characteristic of MS? Between their presence and the fact that you're having sx, I'm glad you're getting another opinion. Is the neuro you're seeing an MS specialist? As good as a regular neuro can be, they're not usually going to be as well versed as a specialist, especially for lesions that aren't "textbook" in shape and location.
MSNik
11-19-2007, 10:10 PM
Gotta agree with Bearygood on this one. Get the second opinion. Your tests, results and symptoms sound too much like MS...not that MS is a bad thing, its not the worse thing imaginable, but you DO need to know what you are dealing with.
Good luck to you..please keep us posted and please continue to reach out to us if you have other questions.
Happy holidays!
Nikki
Good luck to you..please keep us posted and please continue to reach out to us if you have other questions.
Happy holidays!
Nikki
MS for life
11-20-2007, 11:44 AM
The first neuro is very well versed on MS. The issue was when my blood test came back positive for APS, he dropped his dx of MS very quickly and told me to return in six months. I have found very little info on what symptoms APS can produce (I know they mimic MS, but shouldn't they go away when your blood is thinned, which mine has?) Their website most everyone seems to have other issues that cause their symptoms. I don't have any heart (other than mvp), my cholesterol is great, my blood pressure low, weight low, etc. So could the APS be what is causing my problems still? My GP emphatically said no, and then suggested the second opinion.
The symptoms with my hands and feet have really gotten much worse, which is why I went back to my GP first because I knew I could cry to him about my pain and he would not laugh and knows I NEVER have complained in the last ten years I have been seeing him. I was just feeling frustrated and a little scared as I have a transcription business and three very busy kids, and I've been hiding some of my symptoms from my husband, even though he is picking up on it. He is wonderful, but has his own stresses to deal with.
So, now I'm worried again it is MS, but just want some relief. I'm trying to prepare this time. I do have all three sets of MRI's as well as my x-ray of my hip that was taken (may not need that but said okay when they asked if I wanted everything) and my GP said he has access to everything else and would fax it over with a cover letter from him. My appt. is next Wednesday, so I figure I will double check with his office on Monday to be sure that was done.
If you guys have any other input, feel free or if I am forgetting anything else.
The only other main symptom lacking with me is the ON stuff. I did jump from mild reading glasses to progressives, but I never have headaches other than the occasional sinus related ones that I keep at bay with my Allegre.
My memory has done much better since starting on the Neurontin as it mostly helps me sleep better at night, so I am finally not being woken up when my hands and feet fall asleep as much. I have noticed, and it is difficult to pick up as I am coming from a deep sleep, but I seem to jump during the night. I usually fall right back to sleep, but when morning is getting close, I sometimes wake up enough to realize what happened. Again, it is hard to describe as I am awaking from it, so I'm not very alert when it happens. Any thoughts?
Lots of questions, sorry, answer any you have an opinion on and I hope some of this is helping shellyj too.
The symptoms with my hands and feet have really gotten much worse, which is why I went back to my GP first because I knew I could cry to him about my pain and he would not laugh and knows I NEVER have complained in the last ten years I have been seeing him. I was just feeling frustrated and a little scared as I have a transcription business and three very busy kids, and I've been hiding some of my symptoms from my husband, even though he is picking up on it. He is wonderful, but has his own stresses to deal with.
So, now I'm worried again it is MS, but just want some relief. I'm trying to prepare this time. I do have all three sets of MRI's as well as my x-ray of my hip that was taken (may not need that but said okay when they asked if I wanted everything) and my GP said he has access to everything else and would fax it over with a cover letter from him. My appt. is next Wednesday, so I figure I will double check with his office on Monday to be sure that was done.
If you guys have any other input, feel free or if I am forgetting anything else.
The only other main symptom lacking with me is the ON stuff. I did jump from mild reading glasses to progressives, but I never have headaches other than the occasional sinus related ones that I keep at bay with my Allegre.
My memory has done much better since starting on the Neurontin as it mostly helps me sleep better at night, so I am finally not being woken up when my hands and feet fall asleep as much. I have noticed, and it is difficult to pick up as I am coming from a deep sleep, but I seem to jump during the night. I usually fall right back to sleep, but when morning is getting close, I sometimes wake up enough to realize what happened. Again, it is hard to describe as I am awaking from it, so I'm not very alert when it happens. Any thoughts?
Lots of questions, sorry, answer any you have an opinion on and I hope some of this is helping shellyj too.
shellyj
11-20-2007, 01:04 PM
Huge thanks to all. My neuro isn't doing anything at this point. I had a scan with & without contrast to test my pititary gland. He said because that was clean he highly doubts that it MS. I've been told to call him if these sx gets worse or new ones appear. Again, thanks to all & hope each of you have a wonderful Thanksgiving. If it comes out that I'm just crazy & I don't have MS then thank God. But, I have learned so much about MS. And I will now keep each of you in prayer.
Bearygood
11-20-2007, 01:12 PM
MS for life, if I were you I would head to an MS specialist, if only to try to rule it out. Lyme and B12 deficiency can also cause lesions.
shelly, I'm glad our input helped but please I reiterate that based on my own experience, I tend to doubt that a pituitary study would completely rule out the possibility that lesions exist. My count certainly went up when I had my second MRI.
shelly, I'm glad our input helped but please I reiterate that based on my own experience, I tend to doubt that a pituitary study would completely rule out the possibility that lesions exist. My count certainly went up when I had my second MRI.
shellyj
11-20-2007, 01:46 PM
I know. If I'm still having sx after Christmas then I'm going to request a full brain & c spine mri (with & w/o contrast). If he doesn't agree then I'll look for another neuro.
MS for life
11-20-2007, 02:21 PM
Thanks Bearygood, but I live where Lyme is not a disease that is at all prevalent and I have not really traveled to anywhere that I would have picked it up. I know I was tested, but probably not the fancy test you all talk about. I also have looked up Lyme symptoms and I don't seem to have ANY of the symptoms listed. I will be sure to bring it up, however. Also, I did have my B12 levels tested, which were fine. The only thing found was the APS, or Antiphospholipid Antibody Syndrome, or sticky blood.
To catch up, I had nine significant lesions on my first MRI of the brain, none on the MRI of the spine. The radiologist stated no changes on my six month MRI of the brain (both with and without contrast), however my symptoms have definitely gotten worse. My nerve conductivity test came out good, but that was before these new symptoms. I also had an ultrasound of the neck done to rule out blood clots, which again they have not found anything and do not suspect that.
Thanks for the help. I'm so glad I only have a week to wait. I hope I get some answers.
shellyj, do pay close attention to your body and DO call the neuro if you get any worse.
Happy Thanksgiving to all.
To catch up, I had nine significant lesions on my first MRI of the brain, none on the MRI of the spine. The radiologist stated no changes on my six month MRI of the brain (both with and without contrast), however my symptoms have definitely gotten worse. My nerve conductivity test came out good, but that was before these new symptoms. I also had an ultrasound of the neck done to rule out blood clots, which again they have not found anything and do not suspect that.
Thanks for the help. I'm so glad I only have a week to wait. I hope I get some answers.
shellyj, do pay close attention to your body and DO call the neuro if you get any worse.
Happy Thanksgiving to all.
Bearygood
11-20-2007, 02:54 PM
Just to be clear, I'm not talking you into having Lyme. ;) However, the two diseases can present almost exactly the same way so it makes me curious to know what your sx are.
Glad you only have a week to wait! I look foward to hearing how you make out.
You too, Shelly! :)
Glad you only have a week to wait! I look foward to hearing how you make out.
You too, Shelly! :)
MS for life
11-20-2007, 07:34 PM
I guess I read that the symptoms of Lyme start with a rash and then long-term are more arthritis like symptoms. I don't ever recall having a rash of any severity. I cannot even remember the last time I had any type of rash. I don't have any problems in my joints, especially my knees. It is my entire hand or feet become numb and then begin to just be sore after walking or using the numb limb. Often it is the top or bottom of my foot where I feel the pain and not in the joint area. The same in my hands. Carpal tunnel was ruled out as negative also. My hip was very sore a couple of months ago, but I really think that was when I was refusing that my left leg was numb also and continued to try to run on it. I realized I was throwing my body off every time I took a step and thus causing the pain in my hip. I have since totally stopped running (after 20 straight years) and try to walk, but I'm finding that is even very difficult. So that is the only reason I said that Lyme did not seem to fit the bill.
Thanks for your input once again.
Thanks for your input once again.
Bearygood
11-20-2007, 07:53 PM
Again, this is not directed to you personally or suggesting that I know WHAT you have, just to let you know that sx of MS and Lyme can be very similar. Although I can't remember the percentage of people who don't remember getting a rash or ever getting one, it's very high. If you search for ticker's posts on the Lyme board here, she often lists all the sx for new members -- it's interesting reading and enlightening as to why mis-dxes occur. There are a few people who used to be on this board who ultimately discovered they had Lyme and now post over there.