Aa
MS without (enough) lesions
Hi everyone,
I have to be honest -- I'm really scared right now... for the past 6 years my doctors have been trying to determine if I, indeed, do have MS. I present with the following: 2 lesions on my c-spine (unknown origin -- some speculation if due to injury, but I have never had any trauma to this area of my body). I have clear spinals as well as visual test -- blood work came back clear except I know I now have Factor V (Leiden). I experience: left side weakness as well as decreased pain sensitivity. "Wobbly" walking (particularly when I am tired/stressed); forgetfulness; hx depression; "forgetting" where my left (or right) extremities are located when they are not in my direct line of vision (heightened when tired/stressed); I am generally very "hot" (or very "cold"); difficulties with bladder control (tonight I sneezed and I... well, it was embarassing & I was glad I was home alone); occasional difficulties with bowel control (now generally controlled with diet -- chocolate, spicey a no-no); weakness in both arms (e.g. yesterday was trimming shrubs for ~10 min & had weakness for 3+ hours); tremors (generally left side & exacerbated by activity suck as trimming shrubs -- tremor was included in weakness); today I was landscaping (in 90+ degree head -- but hydrating regularly!!) and experienced hazy/blurred vision in my left eye off and on for 10 minutes (it seemed to "move" and then went away once I sat down/cooled off). I have myself in a state of panic right now. My neurologist determined I have a 1:4 chance of MS, but has diagnosed me with Demylination NOS & cannot give me an official MS diagnosis. I'm not after an official diagnosis, but just want to know what is happening... today was particulary scary when my vision became briefly effected as well as yesterday with the prolonged weakness. I'm just trying to find answers as well as courses of action (which, I know, also includes acceptance if I do have MS which I'm open to...). I'm just really scared right now... Please, your comments advice, anything is most welcome. Thank you! Jessica
I have to be honest -- I'm really scared right now... for the past 6 years my doctors have been trying to determine if I, indeed, do have MS. I present with the following: 2 lesions on my c-spine (unknown origin -- some speculation if due to injury, but I have never had any trauma to this area of my body). I have clear spinals as well as visual test -- blood work came back clear except I know I now have Factor V (Leiden). I experience: left side weakness as well as decreased pain sensitivity. "Wobbly" walking (particularly when I am tired/stressed); forgetfulness; hx depression; "forgetting" where my left (or right) extremities are located when they are not in my direct line of vision (heightened when tired/stressed); I am generally very "hot" (or very "cold"); difficulties with bladder control (tonight I sneezed and I... well, it was embarassing & I was glad I was home alone); occasional difficulties with bowel control (now generally controlled with diet -- chocolate, spicey a no-no); weakness in both arms (e.g. yesterday was trimming shrubs for ~10 min & had weakness for 3+ hours); tremors (generally left side & exacerbated by activity suck as trimming shrubs -- tremor was included in weakness); today I was landscaping (in 90+ degree head -- but hydrating regularly!!) and experienced hazy/blurred vision in my left eye off and on for 10 minutes (it seemed to "move" and then went away once I sat down/cooled off). I have myself in a state of panic right now. My neurologist determined I have a 1:4 chance of MS, but has diagnosed me with Demylination NOS & cannot give me an official MS diagnosis. I'm not after an official diagnosis, but just want to know what is happening... today was particulary scary when my vision became briefly effected as well as yesterday with the prolonged weakness. I'm just trying to find answers as well as courses of action (which, I know, also includes acceptance if I do have MS which I'm open to...). I'm just really scared right now... Please, your comments advice, anything is most welcome. Thank you! Jessica
I agree with you. Have you ever been in a accident? If you would like look up R.S.D. / C.P.R.S. I have lived with this for around seven to ten years. I would not wish it on anyone. Keep in touch
Can't believe what I have read. I thank God you had the guts to spit it all out. I am having a lot of the same things. I don't think we are all crazy. Keep in touch
No your not. I was told Friday a lesion as found on my hip. No one could pry this computer until I see one and it is not cancer. Keep me updated
COMMUNITY LEADER
According to research VEP is better than OCT...
"Conclusions: Visual evoked potentials (VEP) remains the preferred test for detecting clinical and subclinical optic neuritis. Optical coherence tomography (OCT) measures were unrelated to disability and demographic features predicting a worse prognosis in multiple sclerosis. OCT may provide complementary information to VEP in select cases, and remains a valuable research tool for studying optic nerve disease in populations."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2707110/
The article explains the stats etc worth reading to get a better understanding.
Cheers...........JJ
"Conclusions: Visual evoked potentials (VEP) remains the preferred test for detecting clinical and subclinical optic neuritis. Optical coherence tomography (OCT) measures were unrelated to disability and demographic features predicting a worse prognosis in multiple sclerosis. OCT may provide complementary information to VEP in select cases, and remains a valuable research tool for studying optic nerve disease in populations."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2707110/
The article explains the stats etc worth reading to get a better understanding.
Cheers...........JJ
Jessica, I just wanted to hear you express your fears. I have found that when express it helps sort the emotions out some. I have a fear of the unknown - being a widow really forced me to face that fear along with a few other things.
I saw a counselor at some point and she had me draw a picture (I looked at her like WHAT?) with a few points of interest that had to be in it - a bridge, something under the bridge (river) and a sky. I drew my picture... it told her that I was unsure of my future, but had hope of goodness with a few hurdles to overcome...all from this picture of a bridge that was gounded (there was no end to it in the picture) the sun was shining with a cloud slightly covering it and I had a few large boulders in my river bed. :)
Pretty amazing huh? She was spot on and I instantly felt better. It taught me a lot about where I was in expressing myself and my fears. The less I expressed my fears the more I let them take over. It gave them power so when I learned to "admit" them... it took the power away.
With that said, "what about having MS scares you?"
Jessica, I have decreased sensation. It is REALLY hard to explain. Also, my right hand... feels swollen...and heavy... that's the best way to describe it. Also, my vision symptoms have been so...weird! I lost some ability in my right eye for depth perception for almost a year. It's gotten better but it was really hard to explain that it was just in one eye.
I know you don't want MS. None of us do. I try to "ignore" it when I feel well and live to my fullest. It's when I don't feel good that I start to panic. A couple things really freak me out - my vision (I won't bore you with my lengthy issues but they are lengthy) but I will say to you that while I have damage.... the worst of my symptoms have improved immensely. Things settled and became a bit more stable.
JJ - I actually think you have the test backwards. I think the OCT is actually the better test. It shows thinning of your optic nerve even if you haven't had ON where the VEP detects damage and not atrophy. They believe that atrophy occurs early on and that shows up in the OCT. This was the case with me. They believe the OCT will eventually replace MRIs for diagnosis and monitoring of progression. The VEP is almost considered obsolete now.
I saw a counselor at some point and she had me draw a picture (I looked at her like WHAT?) with a few points of interest that had to be in it - a bridge, something under the bridge (river) and a sky. I drew my picture... it told her that I was unsure of my future, but had hope of goodness with a few hurdles to overcome...all from this picture of a bridge that was gounded (there was no end to it in the picture) the sun was shining with a cloud slightly covering it and I had a few large boulders in my river bed. :)
Pretty amazing huh? She was spot on and I instantly felt better. It taught me a lot about where I was in expressing myself and my fears. The less I expressed my fears the more I let them take over. It gave them power so when I learned to "admit" them... it took the power away.
With that said, "what about having MS scares you?"
Jessica, I have decreased sensation. It is REALLY hard to explain. Also, my right hand... feels swollen...and heavy... that's the best way to describe it. Also, my vision symptoms have been so...weird! I lost some ability in my right eye for depth perception for almost a year. It's gotten better but it was really hard to explain that it was just in one eye.
I know you don't want MS. None of us do. I try to "ignore" it when I feel well and live to my fullest. It's when I don't feel good that I start to panic. A couple things really freak me out - my vision (I won't bore you with my lengthy issues but they are lengthy) but I will say to you that while I have damage.... the worst of my symptoms have improved immensely. Things settled and became a bit more stable.
JJ - I actually think you have the test backwards. I think the OCT is actually the better test. It shows thinning of your optic nerve even if you haven't had ON where the VEP detects damage and not atrophy. They believe that atrophy occurs early on and that shows up in the OCT. This was the case with me. They believe the OCT will eventually replace MRIs for diagnosis and monitoring of progression. The VEP is almost considered obsolete now.
COMMUNITY LEADER
I've never before heard of a neuro saying a person has a 25% chance of having MS, it makes it sound like there is a mathmatical formula they use to work it out. There isn't one though, the % is really connected to their opinion, what dx they are leaning towards because of the evidence, so i'm not sure what to make of the 25% chance comment.
lol i would of loved to be a fly on the wall when the first neuro mentioned mental health to you, i soooooo hope you did give an earful. Sure psychological is possible but for that idea to be right, health anxiety or conversion disorder is what the person would need to have to be mimicing MS. Its a bit shocking at how often mental health gets mentioned pre-dx, its really common to have psych assessments. I usually encourage people who have had MH mentioned, even if there is no possibility to still get assessed. Getting cleared will help shut that idea down and if it did turn out to be MH, then they can get appropriate treatment, so its a win win situation and well worth having imho.
I too was thinking proprioception whilst reading your hallusinations, a quick test to see if this is the issue is to..."Try the following trick (not recommended for people with a balance or movement disorder): Stand up. Close both your eyes. Balance on one foot (this part is optional, if you prefer) and then touch the tip of your nose with both index fingers. Did you fall over? If you did, you may have a problem with proprioception. If you didn’t, proprioception is why not."
http://synapse.org.au/Health-Medical/proprioception-fact-sheet
I've lost proprioception, i can't close my eyes with out dropping, walking into low light does it too, i knock things over, fumble and other things make it pretty obvious but i've not experienced what you saying "I'll get a sensation that my head/face/mouth are the size of a massize balloon", I can't understand that description. I'm not sure if this part would fit proprioception but that maybe just how i'm confused by "massize ballon" i'm thinking swollen, the only 'sensation' I can think of is tight skin and achy/throb lol i am totally confused by that part.
I am suprised you dont have 'any' brain lesions at all on MRI, but we do have a health page on it so it is possible, you might want to read it to understand how that works. OCT isn't always the best test, VEP (visual evoked potential) is better at evaluating the visual pathways in your brain, OCT doesn't always detect a slight paling of the optic disc if its early days. hmmmm if your vision changed with the heat, I thought that would be an indication there is a visual issue eg ON (optic neuritis) might be worth getting more tests to be sure.
I found an article on demyelinating and infectious diseases of the spinal cord, its quite interesting and may help explain cord lesions and correlating likely conditions, warning its technical so not an easy read.
http://www.scribd.com/doc/56977980/Article-Demyelinating-and-Infectious-Diseases-of-the-Spinal-Cord
Cheers...........JJ
lol i would of loved to be a fly on the wall when the first neuro mentioned mental health to you, i soooooo hope you did give an earful. Sure psychological is possible but for that idea to be right, health anxiety or conversion disorder is what the person would need to have to be mimicing MS. Its a bit shocking at how often mental health gets mentioned pre-dx, its really common to have psych assessments. I usually encourage people who have had MH mentioned, even if there is no possibility to still get assessed. Getting cleared will help shut that idea down and if it did turn out to be MH, then they can get appropriate treatment, so its a win win situation and well worth having imho.
I too was thinking proprioception whilst reading your hallusinations, a quick test to see if this is the issue is to..."Try the following trick (not recommended for people with a balance or movement disorder): Stand up. Close both your eyes. Balance on one foot (this part is optional, if you prefer) and then touch the tip of your nose with both index fingers. Did you fall over? If you did, you may have a problem with proprioception. If you didn’t, proprioception is why not."
http://synapse.org.au/Health-Medical/proprioception-fact-sheet
I've lost proprioception, i can't close my eyes with out dropping, walking into low light does it too, i knock things over, fumble and other things make it pretty obvious but i've not experienced what you saying "I'll get a sensation that my head/face/mouth are the size of a massize balloon", I can't understand that description. I'm not sure if this part would fit proprioception but that maybe just how i'm confused by "massize ballon" i'm thinking swollen, the only 'sensation' I can think of is tight skin and achy/throb lol i am totally confused by that part.
I am suprised you dont have 'any' brain lesions at all on MRI, but we do have a health page on it so it is possible, you might want to read it to understand how that works. OCT isn't always the best test, VEP (visual evoked potential) is better at evaluating the visual pathways in your brain, OCT doesn't always detect a slight paling of the optic disc if its early days. hmmmm if your vision changed with the heat, I thought that would be an indication there is a visual issue eg ON (optic neuritis) might be worth getting more tests to be sure.
I found an article on demyelinating and infectious diseases of the spinal cord, its quite interesting and may help explain cord lesions and correlating likely conditions, warning its technical so not an easy read.
http://www.scribd.com/doc/56977980/Article-Demyelinating-and-Infectious-Diseases-of-the-Spinal-Cord
Cheers...........JJ
Yep -- I've done a lot of research personally & work related regarding proprioception. I experience it with the "hallucinations" (I just don't have a better word to describe what's happening) ...
As well as, for example, if I'm watching TV and holding the remote in my hand -- I can't feel the remote or feel where my arm is located... until I look at it or touch it. I've had this happen to my other limbs as well.
It's like my limbs are numb... but they're not... I just can't feel them until I can see them or touch them. When I try to explain it to people, they look at me funny... "So your arm is numb?" No... I just can't feel it... It's a strange sensation (or lack thereof) to say the least.
As well as, for example, if I'm watching TV and holding the remote in my hand -- I can't feel the remote or feel where my arm is located... until I look at it or touch it. I've had this happen to my other limbs as well.
It's like my limbs are numb... but they're not... I just can't feel them until I can see them or touch them. When I try to explain it to people, they look at me funny... "So your arm is numb?" No... I just can't feel it... It's a strange sensation (or lack thereof) to say the least.
We are in the same boat! After an MRI came back with lesions on my cerebellum, I was diagnosed with MS and put on Betaseron, later Copaxone. About a year later the diagnosis was taken away when my followup MRI came back clean. I have switched doctors twice and they both say that I probably dont have MS, but doent want to rule it out either. They sent me. to an infectious disease doctor who blamed everything on a virus. I have had a spinal tap and VEP, both came out fine.
While I dont feel as bad as I did 5-6 years ago, I still get episodes of vertigo, double vision, and facial pain. My left side has gotten noticbly weaker and it's become more difficult to write. However, the fatigue, heat intolerance and pain has gotten much better.
It's been a year since I have been to a neuro, I am just tired of getting the runaround!!!
While I dont feel as bad as I did 5-6 years ago, I still get episodes of vertigo, double vision, and facial pain. My left side has gotten noticbly weaker and it's become more difficult to write. However, the fatigue, heat intolerance and pain has gotten much better.
It's been a year since I have been to a neuro, I am just tired of getting the runaround!!!
When I read your hallucinations description, I immediately thought of "proprioception" problems I've experienced . . . for example, while walking down a long hallway, my torso "wanted" to move toward the right and my legs to the left. I had to focus and very deliberately line up my body's movements. It was so strange, and I just hoped those with me were not aware of what was going on with me at the time.
Hello everyone,
I'll try to address all your questions, but first & foremost let me say THANK YOU for your kindness here!
My Neuro seemed to indicate that I didn't have enough lesions for an "official" dx of MS, but I have all of the physical indicators aside... She said (6 months ago) I have a 25% chance of MS -- to which I said "Great! I have a 75% chance of not having MS" She told me, "No, not great... you have a 25% chance of having MS." -- a bit of a downer...
I have had no indicated lesions in my brain. They've only been noted (2 total) at C-2 and C-3. My current Neuro isn't an MS specialist, but department head. In live in a pretty rural area & MS specialists are not particularly common. I've found 2 which are also associated with the hospital, but when I looked up their backgrounds I wasn't particularly impressed. I do like my Neuro & do trust her. She's been up front with me about everything.
I've been working harder at taking care of myself better... but I'm stubborn and habit die hard. I've been taking more frequent breaks in the heat, etc. but I do love the summer months when I can be out & about in the garden!
I did have the OCT (visual) exam completed & that returned normal as well. I, from time to time, really question my sanity in all of this. Am I imagining all of this? Is this just a part of getting older? I'm 34...!
I really do question sometimes if this is all just part for the course of aging and/or it's all in my head. My prev. Neuro (which is another reason I requested a 2nd opinion) actually told me that "this" all my sx were due to depression and it was "all in my head" and I should see a psychiatrist and not a Neurologist. Yeah... that didn't go over very well. I have a Masters in Psych. I'm a pretty smart gal... He got a earful from me. (sorry... needed to vent).
On top of everything else, are "hallucinations" common? For example, when typing at the computer I will feel as if I'm sitting very high up or very low (down and far away) from the computer. Or... I'll get a sensation that my head/face/mouth are the size of a massize balloon. I can get the sensations to stop if I look away from the computer screen or touch my head/face/mouth. Thoughts?
I'll try to address all your questions, but first & foremost let me say THANK YOU for your kindness here!
My Neuro seemed to indicate that I didn't have enough lesions for an "official" dx of MS, but I have all of the physical indicators aside... She said (6 months ago) I have a 25% chance of MS -- to which I said "Great! I have a 75% chance of not having MS" She told me, "No, not great... you have a 25% chance of having MS." -- a bit of a downer...
I have had no indicated lesions in my brain. They've only been noted (2 total) at C-2 and C-3. My current Neuro isn't an MS specialist, but department head. In live in a pretty rural area & MS specialists are not particularly common. I've found 2 which are also associated with the hospital, but when I looked up their backgrounds I wasn't particularly impressed. I do like my Neuro & do trust her. She's been up front with me about everything.
I've been working harder at taking care of myself better... but I'm stubborn and habit die hard. I've been taking more frequent breaks in the heat, etc. but I do love the summer months when I can be out & about in the garden!
I did have the OCT (visual) exam completed & that returned normal as well. I, from time to time, really question my sanity in all of this. Am I imagining all of this? Is this just a part of getting older? I'm 34...!
I really do question sometimes if this is all just part for the course of aging and/or it's all in my head. My prev. Neuro (which is another reason I requested a 2nd opinion) actually told me that "this" all my sx were due to depression and it was "all in my head" and I should see a psychiatrist and not a Neurologist. Yeah... that didn't go over very well. I have a Masters in Psych. I'm a pretty smart gal... He got a earful from me. (sorry... needed to vent).
On top of everything else, are "hallucinations" common? For example, when typing at the computer I will feel as if I'm sitting very high up or very low (down and far away) from the computer. Or... I'll get a sensation that my head/face/mouth are the size of a massize balloon. I can get the sensations to stop if I look away from the computer screen or touch my head/face/mouth. Thoughts?
I am so sorry for what you are going through. That is tough and it is terrifying to be in limbo.
Based on your post title, I got the sense that your doc was suggesting you did not have enough lesions? Is that something that happens in MS? I have one rather large lesion and a smaller lesion...my doc did not seem to think the # was significant.
I hope you do not have MS, but if you do, good luck and I will keep you in my thoughts, as scattered as they are!
Based on your post title, I got the sense that your doc was suggesting you did not have enough lesions? Is that something that happens in MS? I have one rather large lesion and a smaller lesion...my doc did not seem to think the # was significant.
I hope you do not have MS, but if you do, good luck and I will keep you in my thoughts, as scattered as they are!
Jessica, Fear is a very common and usual feeling when you are at this point in the diagnosis process. You nailed it when you talk about just wanting to know what is wrong with you. Knowing what you are battling allows you to arm yourself with knowledge.
The things you describe could be MS but could also be other things. It sounds like you have a good doctor who is willing to look at the options and keep looking until there are answers for you.
I'm glad you found us here and I hope you will come around often, ask your questions, share your feelings and thoughts, and just hang out.
wishing you well,
L
The things you describe could be MS but could also be other things. It sounds like you have a good doctor who is willing to look at the options and keep looking until there are answers for you.
I'm glad you found us here and I hope you will come around often, ask your questions, share your feelings and thoughts, and just hang out.
wishing you well,
L
COMMUNITY LEADER
Your not a wimp sweety, the weird stuff can honestly get really scary sometimes, vision changes seems to commonly freak everyone out the first time, BREATH!!
You apear to have experienced heat intollerance, with the vision change I definitely your talking about whats called 'Uhtoff's phenonemon' its pretty classic in demyling conditions, of which MS is the most common type. I know you've said you have spinal lesions but some of your sx indicate that you probably have them in your brain too. Do you have any at all in your brain? They dont need to have been specifically classified as demylinating in the brain MRI report but is there any mentioned at all?
I'm sort of gob smacked that your dx is not MS but "Demylination NOS" even with your sx alone, to me MS is standing out on the top of the list of more likely dx's. The only question thats coming to me is about your neuro's ability to dx MS, Is he/she an MS specialist or a general neuro? You'd think a specialist would of called it by now so you can start a DMD, i really think you might need to get a third opinion with someone who is definitely an MS specialist.
Call your neuro and inform them of the 'temperary' visual loss from the hot weather, you should be sent for visual testing. In the mean time, if and when it happens again, try not to panic, get your self cooled down, rest up and it should soon be resolved.
HUGS.........JJ
You apear to have experienced heat intollerance, with the vision change I definitely your talking about whats called 'Uhtoff's phenonemon' its pretty classic in demyling conditions, of which MS is the most common type. I know you've said you have spinal lesions but some of your sx indicate that you probably have them in your brain too. Do you have any at all in your brain? They dont need to have been specifically classified as demylinating in the brain MRI report but is there any mentioned at all?
I'm sort of gob smacked that your dx is not MS but "Demylination NOS" even with your sx alone, to me MS is standing out on the top of the list of more likely dx's. The only question thats coming to me is about your neuro's ability to dx MS, Is he/she an MS specialist or a general neuro? You'd think a specialist would of called it by now so you can start a DMD, i really think you might need to get a third opinion with someone who is definitely an MS specialist.
Call your neuro and inform them of the 'temperary' visual loss from the hot weather, you should be sent for visual testing. In the mean time, if and when it happens again, try not to panic, get your self cooled down, rest up and it should soon be resolved.
HUGS.........JJ
Well, to be honest, I'm afraid of actually having MS -- I thought I was comfortable/Ok with this when she told me I have a 25% chance of having MS about 9 months ago, but today... the vision change today, which I've never had before, scared me. A lot.
I've been seeing my current Neurologist now for 1 year. She is my 2nd opinion as my first told me, "Well, your brain is just wired funny." I needed something more concrete. Hence the 2nd opinion. I've had full labs (countless -- more than 20 vials of blood draw & I've lost track of all done -- but do recall copper & mercury levels were checked -- I can go into my online charts if more specifics are needed). I've had a full MRI as well as a spinal. I did have an EEG completed as well. All within normal limits with the exception of the 2 lesions & the Factor V. No EMG, EP, & am not sure what specific labs should really be done. I've been avoiding doing too much "homework" on all of this... and when I try to learn more, I scare myself. I'm a wimp!
I've been seeing my current Neurologist now for 1 year. She is my 2nd opinion as my first told me, "Well, your brain is just wired funny." I needed something more concrete. Hence the 2nd opinion. I've had full labs (countless -- more than 20 vials of blood draw & I've lost track of all done -- but do recall copper & mercury levels were checked -- I can go into my online charts if more specifics are needed). I've had a full MRI as well as a spinal. I did have an EEG completed as well. All within normal limits with the exception of the 2 lesions & the Factor V. No EMG, EP, & am not sure what specific labs should really be done. I've been avoiding doing too much "homework" on all of this... and when I try to learn more, I scare myself. I'm a wimp!
Hi Jessica! Welcome ~
Can I ask some questions? How long have you been seeing this Neuro? What other tests has he/she done? Evoked Potentials? Labs? EEG? EMG? Did he/she refer you out to more specialists or for more tests?
...and have you reviewed the health pages? They are a great source of information about many things that come up when we are in limboland. In my case, in my worst flare I had chest and abdominal pain. It turns out it was the MS Hug and parathesia. Those wonderful pages helped me determine the additional symptoms I never knew I had.
You didn't say...what are you afraid of?
Can I ask some questions? How long have you been seeing this Neuro? What other tests has he/she done? Evoked Potentials? Labs? EEG? EMG? Did he/she refer you out to more specialists or for more tests?
...and have you reviewed the health pages? They are a great source of information about many things that come up when we are in limboland. In my case, in my worst flare I had chest and abdominal pain. It turns out it was the MS Hug and parathesia. Those wonderful pages helped me determine the additional symptoms I never knew I had.
You didn't say...what are you afraid of?
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