Aa
new to board
hello there,
i have lurked around this group for some time, having taken up residence in the neuro limboland forum for some time. i have been dealing with a number of bizarre neuro symptoms for over a year which all started with a headache that presented at the base of my skull on the left side, flu-like symptoms, intense fatigue, muscle weakness and twitching. until yesterday was told repeatedly that i did not have MS due to 2 clean brain MRIs, 2 clean c-spine MRIs, and a negative VEP.
after experiencing severe eye pain and spontaneious bilateral pupil dilation, i saw a neuro-ophtho in november who noted that the arteries feeding my optic nerves were smaller than he would expect for someone my age (42) and labeled it vasculitis. he said it is commonly seen in patients with lupus or other inflammatory autoimmune processes and referred me to a rheumie. she ruled out CNS vasculitis, but said i do have a form of vasculopathy and put me on an 81mg baby aspirin to increase bloodflow. all my rheumie panel bloodwork has been normal, yet the rheumie still feels that i am dealing with an as-of-yet undiagnosed autoimmune process. she started me on 400mg of plaquenil a few weeks ago. she has also referred me to a sjogren's study at our local research university where i will undergo a thorough rheumatological exam and also have a salivary gland biopsy in a couple of weeks to rule it out as well since sjogren's and other autoimmune diseases can present neurologically in some cases.
fast forward: this past monday i had a follow-up c-spine MRI because if have a herniated c5-c6 disc that my neurologist thought was the source of all my troubles for some time, but i didn't buy it. the doc himself called me last night and said the scan revealed an area of inflammation on my c-spine, in other words, a lesion. he called the lesion a "transverse myelitis" and said that it can be an isolated incident, but most often is due to MS. he arranged for me to start a 3-day course of IV corticosteroid treatments this afternoon, wants to do an LP and a 3-tesla MRI of my brain to ensure there aren't any lesions the 1.5t scan may have missed.
after poking around online--as i am wont to do--i read that transverse myelitis can be related to the onset of MS, but also to other disease processes, such a sjogren's and other autoimmune disease. however, i have not been able to find any connection between the small vessel vascular abnormalities in my eyes and MS. i have not had optic neuritis according to my neuro-ophtho exam and he also said the normal VEP helps to confirm that. i have read about optic neuritis, nystagmus, and eye pain when moving one's eyes, but have any of you had inflammation of the actual small vessels in your eyes with MS? i have also read that one can have MS and other autoimmune diseases, but it is not all that common. (is this correct?)
furthermore, i understand that the IV steroid treatments are intended to reduce inflammation and if my symptoms improve after treatment, we can link the symptoms to the lesion. but my neuro said that i can't receive a dx of MS until i have another lesion and another "attack". so what do you do in the mean time? sit around and wait for more lesions to pop up in a place that could render one disabled?
i am sorry this is so long, but it's all so confusing to me.
any feedback from the more experienced members of this forum would be most welcome.
with healing thoughts and thanks in advance,
binx
i have lurked around this group for some time, having taken up residence in the neuro limboland forum for some time. i have been dealing with a number of bizarre neuro symptoms for over a year which all started with a headache that presented at the base of my skull on the left side, flu-like symptoms, intense fatigue, muscle weakness and twitching. until yesterday was told repeatedly that i did not have MS due to 2 clean brain MRIs, 2 clean c-spine MRIs, and a negative VEP.
after experiencing severe eye pain and spontaneious bilateral pupil dilation, i saw a neuro-ophtho in november who noted that the arteries feeding my optic nerves were smaller than he would expect for someone my age (42) and labeled it vasculitis. he said it is commonly seen in patients with lupus or other inflammatory autoimmune processes and referred me to a rheumie. she ruled out CNS vasculitis, but said i do have a form of vasculopathy and put me on an 81mg baby aspirin to increase bloodflow. all my rheumie panel bloodwork has been normal, yet the rheumie still feels that i am dealing with an as-of-yet undiagnosed autoimmune process. she started me on 400mg of plaquenil a few weeks ago. she has also referred me to a sjogren's study at our local research university where i will undergo a thorough rheumatological exam and also have a salivary gland biopsy in a couple of weeks to rule it out as well since sjogren's and other autoimmune diseases can present neurologically in some cases.
fast forward: this past monday i had a follow-up c-spine MRI because if have a herniated c5-c6 disc that my neurologist thought was the source of all my troubles for some time, but i didn't buy it. the doc himself called me last night and said the scan revealed an area of inflammation on my c-spine, in other words, a lesion. he called the lesion a "transverse myelitis" and said that it can be an isolated incident, but most often is due to MS. he arranged for me to start a 3-day course of IV corticosteroid treatments this afternoon, wants to do an LP and a 3-tesla MRI of my brain to ensure there aren't any lesions the 1.5t scan may have missed.
after poking around online--as i am wont to do--i read that transverse myelitis can be related to the onset of MS, but also to other disease processes, such a sjogren's and other autoimmune disease. however, i have not been able to find any connection between the small vessel vascular abnormalities in my eyes and MS. i have not had optic neuritis according to my neuro-ophtho exam and he also said the normal VEP helps to confirm that. i have read about optic neuritis, nystagmus, and eye pain when moving one's eyes, but have any of you had inflammation of the actual small vessels in your eyes with MS? i have also read that one can have MS and other autoimmune diseases, but it is not all that common. (is this correct?)
furthermore, i understand that the IV steroid treatments are intended to reduce inflammation and if my symptoms improve after treatment, we can link the symptoms to the lesion. but my neuro said that i can't receive a dx of MS until i have another lesion and another "attack". so what do you do in the mean time? sit around and wait for more lesions to pop up in a place that could render one disabled?
i am sorry this is so long, but it's all so confusing to me.
any feedback from the more experienced members of this forum would be most welcome.
with healing thoughts and thanks in advance,
binx
bump
Hi Binx,
I think that it's great that you are getting a second opinion and I can see that the disc bulges and a herniation could confuse things more.
Please let us know how you get on with your other opinion, it sounds like you are getting the complete work up, hopefully it will all become clearer, I can understand why you are confused, I spend half my life confused. (smile),
Take care,
Welcome again to this lovely group..
Cheers
Udkas
I think that it's great that you are getting a second opinion and I can see that the disc bulges and a herniation could confuse things more.
Please let us know how you get on with your other opinion, it sounds like you are getting the complete work up, hopefully it will all become clearer, I can understand why you are confused, I spend half my life confused. (smile),
Take care,
Welcome again to this lovely group..
Cheers
Udkas
dear ren, carol & udkas,
thank you so much for taking the time to respond to my original post and for sharing some of your own stories with me. it is all helpful for me as far as my information gathering is concerned, not to mention allowing me to not feel so isolated in my experience here. i am still coming down off of the steroids, so i'm incredibly emotional at the moment and really appreciate the warmth of your replies.
ren: when the docs suspected vasculitis, was it based on something they saw or from symptoms you were experiencing? we'll see what happens with the sjögren's study and lip biopsy in 2 weeks. they're supposed to be able to give me results at the end of the day, so i guess i'll have my answer one way or another.
carol: i am grateful for your prayers as they are most welcome during this really scary time. i am sending them right back to you and your family.
udkas: you are indeed knowledgeable about TM, and i thank you for all the good info about the disorder. (the longer reply, the better for me!) the thing that i keep wondering about is that my MRI report that the myelitis is presenting on the anterior face of the cord, longitudinally from c3-c7, and not across the width. like i mentioned in an earlier post, i have disc bulges and a herniation which are impinging my cord at that same location which might have something to do with this. i am seeking a second opinion at my local university med center, so we'll see what happens in the coming weeks.
best wishes to all of you and many thanks again,
binx
thank you so much for taking the time to respond to my original post and for sharing some of your own stories with me. it is all helpful for me as far as my information gathering is concerned, not to mention allowing me to not feel so isolated in my experience here. i am still coming down off of the steroids, so i'm incredibly emotional at the moment and really appreciate the warmth of your replies.
ren: when the docs suspected vasculitis, was it based on something they saw or from symptoms you were experiencing? we'll see what happens with the sjögren's study and lip biopsy in 2 weeks. they're supposed to be able to give me results at the end of the day, so i guess i'll have my answer one way or another.
carol: i am grateful for your prayers as they are most welcome during this really scary time. i am sending them right back to you and your family.
udkas: you are indeed knowledgeable about TM, and i thank you for all the good info about the disorder. (the longer reply, the better for me!) the thing that i keep wondering about is that my MRI report that the myelitis is presenting on the anterior face of the cord, longitudinally from c3-c7, and not across the width. like i mentioned in an earlier post, i have disc bulges and a herniation which are impinging my cord at that same location which might have something to do with this. i am seeking a second opinion at my local university med center, so we'll see what happens in the coming weeks.
best wishes to all of you and many thanks again,
binx
Hi there and welcome,
I have a diagnosis of Transverse Myelitis.
Transverse Myelitis simply means inflammation across both sides of one level, or segment of the spinal cord. Transverse (across), Myelitis (Inflammation)
TM can occur as a single epsisode, it can be acute, sub acute, etc. the acute form can hit and take affect within hours and the sub acute happens over a period of weeks. TM often occurs after viral infections but can occur alone with no known cause. Sometimes TM can be the first attack of Multiple Sclerosis so TM patients should be monitored for further attacks, but research has shown that most don't go on to develop MS. Also closely linked is NMO or Devics which is where you get lesions in your spinal cord and optic neuritis but no brain lesions.
TM can also reoccur especially if it's cause is from another underlying condition, in other words that the TM is secondary to something else like Lupus or Sjorden's etc. some drugs and some cancers can cause TM as can some vascular disorders, TM is really just a name for inflammation across one segement of the spinal cord. Sometimes TM can reoccur with no known reason, this is rare but can happen, which is what my neuro thinks is happening to me.
The treatment for TM and MS are completely different, so it sounds like your Doctor is doing the right thing and monitoring you for MS as well. Treatment for TM is plasma exchange and steroid treatment is often administered early in an attack to try and cut down the inflammation to the spinal cord.
It sounds like your neuro is doing all the appropriate testing and giving you the drugs that are needed at this time. I hope that it is an isolated event and that you don't have anymore attacks, certainly your description of onset fits TM. I hope that it doesn't change to MS and that they don't find any brain lesions. The worst part is waiting and wondering. If you have any questions about TM I have spent hours reading about it, my neuro also gave me a whole heap of sheets on it too, so although not an expert I do have a special interest. I hope you are feeling better soon.
Take care,
Welcome to the forum, we have other TMs here, some have gone to MS and some have stayed as TM.
Sorry my reply was so long.
Udkas.
I have a diagnosis of Transverse Myelitis.
Transverse Myelitis simply means inflammation across both sides of one level, or segment of the spinal cord. Transverse (across), Myelitis (Inflammation)
TM can occur as a single epsisode, it can be acute, sub acute, etc. the acute form can hit and take affect within hours and the sub acute happens over a period of weeks. TM often occurs after viral infections but can occur alone with no known cause. Sometimes TM can be the first attack of Multiple Sclerosis so TM patients should be monitored for further attacks, but research has shown that most don't go on to develop MS. Also closely linked is NMO or Devics which is where you get lesions in your spinal cord and optic neuritis but no brain lesions.
TM can also reoccur especially if it's cause is from another underlying condition, in other words that the TM is secondary to something else like Lupus or Sjorden's etc. some drugs and some cancers can cause TM as can some vascular disorders, TM is really just a name for inflammation across one segement of the spinal cord. Sometimes TM can reoccur with no known reason, this is rare but can happen, which is what my neuro thinks is happening to me.
The treatment for TM and MS are completely different, so it sounds like your Doctor is doing the right thing and monitoring you for MS as well. Treatment for TM is plasma exchange and steroid treatment is often administered early in an attack to try and cut down the inflammation to the spinal cord.
It sounds like your neuro is doing all the appropriate testing and giving you the drugs that are needed at this time. I hope that it is an isolated event and that you don't have anymore attacks, certainly your description of onset fits TM. I hope that it doesn't change to MS and that they don't find any brain lesions. The worst part is waiting and wondering. If you have any questions about TM I have spent hours reading about it, my neuro also gave me a whole heap of sheets on it too, so although not an expert I do have a special interest. I hope you are feeling better soon.
Take care,
Welcome to the forum, we have other TMs here, some have gone to MS and some have stayed as TM.
Sorry my reply was so long.
Udkas.
I just wanted to send you a welcome and to let you know that you are among friends here. This is one terrific bunch of people and I would say we are more like family. Everyone cares for everyone else and it's the deep down, I understand what your talking about kind of caring that we all need at this time in our lives.
I'll be praying,
Carol
I'll be praying,
Carol
Hi and another welcome!
I was in limbo for years with Sjogren's being considered the cause of my symptoms. Took Plaquenil for 2 years - no improvement. continued with joint pain, dry eyes and mouth. Non-specific findings on MRIs. Theories about vasculitis and complex migraines causing MRI changes abounded.
FINALLY, the MS neuro at the academic hospital sent me to their rheumie who didn't think I had Sjogren's. rheumie sent me for a lip biopsy which finally ruled out Sjogrens. Why nobody suggested this before is beyond me. The joint pain was actually hip flexor weakness due to the MS.
So, I know the road you are on. The defining point in my diagnosis was the negative lip biopsy and last February I developed weakness in my left leg and was unable to lift it up high enough to get it in the car. Bingo! Finally a diagnosis.
I don't know if any of this is helpful or not. I do know the MS neuro was still considering Sjogrens due to my presentation until the negative lip biopsy so the two produce very similar symptoms.
I hope your diagnosis becomes clearer after your Sjogrens work-up and if it is MS that your symptoms are mild.
Ren
I was in limbo for years with Sjogren's being considered the cause of my symptoms. Took Plaquenil for 2 years - no improvement. continued with joint pain, dry eyes and mouth. Non-specific findings on MRIs. Theories about vasculitis and complex migraines causing MRI changes abounded.
FINALLY, the MS neuro at the academic hospital sent me to their rheumie who didn't think I had Sjogren's. rheumie sent me for a lip biopsy which finally ruled out Sjogrens. Why nobody suggested this before is beyond me. The joint pain was actually hip flexor weakness due to the MS.
So, I know the road you are on. The defining point in my diagnosis was the negative lip biopsy and last February I developed weakness in my left leg and was unable to lift it up high enough to get it in the car. Bingo! Finally a diagnosis.
I don't know if any of this is helpful or not. I do know the MS neuro was still considering Sjogrens due to my presentation until the negative lip biopsy so the two produce very similar symptoms.
I hope your diagnosis becomes clearer after your Sjogrens work-up and if it is MS that your symptoms are mild.
Ren
i wanted to bump this up again in hopes that Quix might have a chance to respond.
thanks so very, very much.
binx
thanks so very, very much.
binx
hi alex,
i appreciate your response and LOVE your analogy to alice's adventures in wonderland. it is *precisely* how i have experienced this whole insane journey. i have been led down so many different wacky paths, i don't know where i'll end up.
and yes--deep breathing is critical. i am very much trying to adopt some form of practice to connect my breath with my mind to cope with all this stress. sometimes i get so spun out, i forget to do what's best for me under the circumstances.
thanks for reaching out to me, and take good care.
binx
i appreciate your response and LOVE your analogy to alice's adventures in wonderland. it is *precisely* how i have experienced this whole insane journey. i have been led down so many different wacky paths, i don't know where i'll end up.
and yes--deep breathing is critical. i am very much trying to adopt some form of practice to connect my breath with my mind to cope with all this stress. sometimes i get so spun out, i forget to do what's best for me under the circumstances.
thanks for reaching out to me, and take good care.
binx
Welcome,
I know it is frustrating in Limbo phase. Many of us have been there. I recommend remembering to breath deeply every once in a while. I forgot this simple thing.
I likened my diagnosis to Alice in Wonderland going down the rabbit hole. Sometimes I was like wait a minute first you say this then this and another doctors says this and still another this.
Hang in there,
Alex
I know it is frustrating in Limbo phase. Many of us have been there. I recommend remembering to breath deeply every once in a while. I forgot this simple thing.
I likened my diagnosis to Alice in Wonderland going down the rabbit hole. Sometimes I was like wait a minute first you say this then this and another doctors says this and still another this.
Hang in there,
Alex
dear ess,
thank you for your reply and for your welcome, which, in and of itself, are both very helpful to me.
i have been watching my posts drop lower and lower on the board, and don't want to be pushy by bumping them up since there are so many of us in need of information and support. but if you say it's okay, then i'll do it!
i appreciate your well wishes and return them in full. i hope you're having a restful sunday.
best wishes,
binx
thank you for your reply and for your welcome, which, in and of itself, are both very helpful to me.
i have been watching my posts drop lower and lower on the board, and don't want to be pushy by bumping them up since there are so many of us in need of information and support. but if you say it's okay, then i'll do it!
i appreciate your well wishes and return them in full. i hope you're having a restful sunday.
best wishes,
binx
Hi, and another welcome from me.
Your situation is complicated, and really beyond my ability to say anything helpful. It does sound as if you have good, pro-active doctors who are staying on top of things.
We've had a lot of discussions of TM here. You can find these by using the Search this Community box, in the upper right of the screen.
Quix is very knowledgeable on this subject, even though she is not a neurologist. You might want to keep 'bumping' your post to the top, where it is more likely that she and others will be able to offer comments.
As for me, I send best wishes and a hope that you will stay with us.
ess
Your situation is complicated, and really beyond my ability to say anything helpful. It does sound as if you have good, pro-active doctors who are staying on top of things.
We've had a lot of discussions of TM here. You can find these by using the Search this Community box, in the upper right of the screen.
Quix is very knowledgeable on this subject, even though she is not a neurologist. You might want to keep 'bumping' your post to the top, where it is more likely that she and others will be able to offer comments.
As for me, I send best wishes and a hope that you will stay with us.
ess
hi shell,
thanks for your response and for your warm welcome.
i am being managed by both my neurologist and rheumatologist, with the neuro ordering the primary testing right now. i also have a neuro-ophthalmologist in the mix as well, but don't see him for another month. i just had my second infusion of solu-medrol yesterday and go for me third and final dose this afternoon. i'll have another LP and 3tesla brain & c-spine MRIs with contrast next week, so i guess i am in "knee deep" at this point. as you can imagine, my head is spinning.
my rheumie is she is a sjögren's expert and is sending me for a full day sjögren's workup at our local research university in a couple of weeks to rule out neuro-presentation of that syndrome as she said it can sometimes result in myelitis. i have had some sjögren's symptoms--dry eyes, mouth, and the vascular problems in my eyes, so we figure it's worth a shot. if that gets ruled out, looks i'll be on this board to stay. with the support and compassion of the folks here and in the neuro limboland forum, i don't feel so isolated in my experience.
thanks so much.
best wishes,
binx
thanks for your response and for your warm welcome.
i am being managed by both my neurologist and rheumatologist, with the neuro ordering the primary testing right now. i also have a neuro-ophthalmologist in the mix as well, but don't see him for another month. i just had my second infusion of solu-medrol yesterday and go for me third and final dose this afternoon. i'll have another LP and 3tesla brain & c-spine MRIs with contrast next week, so i guess i am in "knee deep" at this point. as you can imagine, my head is spinning.
my rheumie is she is a sjögren's expert and is sending me for a full day sjögren's workup at our local research university in a couple of weeks to rule out neuro-presentation of that syndrome as she said it can sometimes result in myelitis. i have had some sjögren's symptoms--dry eyes, mouth, and the vascular problems in my eyes, so we figure it's worth a shot. if that gets ruled out, looks i'll be on this board to stay. with the support and compassion of the folks here and in the neuro limboland forum, i don't feel so isolated in my experience.
thanks so much.
best wishes,
binx
Hi Binx,
We are part limbo part dx'er group. We all live here happily amongst one another ha/ha.
Mary's interp of your arrival, back door in sounds spot on. But, no matter how you got here - it's good to have you.
When I 1st read through your post and what you said about your eyes, I thought maybe this is the vascular changes we read about and it's a mimic, but then the lesion was found in your spine - and that's not something we hear about i.e., vasular causing spinal lesions. Much more to be dug into by your dr. I see.
So are you knee deep in a work up? Who is ordering the tests?
Thanks for joining us,
shell
We are part limbo part dx'er group. We all live here happily amongst one another ha/ha.
Mary's interp of your arrival, back door in sounds spot on. But, no matter how you got here - it's good to have you.
When I 1st read through your post and what you said about your eyes, I thought maybe this is the vascular changes we read about and it's a mimic, but then the lesion was found in your spine - and that's not something we hear about i.e., vasular causing spinal lesions. Much more to be dug into by your dr. I see.
So are you knee deep in a work up? Who is ordering the tests?
Thanks for joining us,
shell
hi mary,
thank you for the very warm welcome to the group, and i'll look forward to getting up to speed with you. like i said, i have read through many posts here before joining, and there is a whole lot of wisdom going on here, as in the limboland group.
i do have some good docs, finally, after going through 18 different ones in the past 13 months. after repeatedly being told i was having somatic symptoms and given "refillable" prescriptions for valium, anti-anxiety meds and anti-depressants, i just started cutting the docs loose until i found people who would actually listen to me. it has been downright brutal but i have assembled a good team.
again, thanks for reaching out.
best wishes,
binx
thank you for the very warm welcome to the group, and i'll look forward to getting up to speed with you. like i said, i have read through many posts here before joining, and there is a whole lot of wisdom going on here, as in the limboland group.
i do have some good docs, finally, after going through 18 different ones in the past 13 months. after repeatedly being told i was having somatic symptoms and given "refillable" prescriptions for valium, anti-anxiety meds and anti-depressants, i just started cutting the docs loose until i found people who would actually listen to me. it has been downright brutal but i have assembled a good team.
again, thanks for reaching out.
best wishes,
binx
Hi dee ho back to you binx and welcome. Thanks for introducing yourself.
It looks like you are making a back door entrance to this world, eh? I'm so glad to see there are several docs listening to you and working with you. I guess you'll have to wait at least a little while until you get results from all those scheduled tests. I would think if the new brain MRI shows lesion(s) or the LP is positive that would lock things up for your neuro. But sometimes they can be hard to predict.
I'm new to this rodeo so I'll just howdie and leave it to the more experienced minds to advise you.
Mary
It looks like you are making a back door entrance to this world, eh? I'm so glad to see there are several docs listening to you and working with you. I guess you'll have to wait at least a little while until you get results from all those scheduled tests. I would think if the new brain MRI shows lesion(s) or the LP is positive that would lock things up for your neuro. But sometimes they can be hard to predict.
I'm new to this rodeo so I'll just howdie and leave it to the more experienced minds to advise you.
Mary
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