Diagnosed and surprised - no symptoms.

[bosman]

Hello everyone,
I am new to this forum. I am 39 years old.
Lats December I had a accident while skiing. I fainted and hit a tree. After that incident I had a CAT scan performed. Everything was fine. Just low pulse.

About a month ago I got up in the middle of the night to take a sip of water. I felt very thirsty. By the time I got downstairs, I felt "funny". Called my wife, and by the time she came down running I was already on the floor nearly fainted.

I went to the doctor since fainting twice already seemed not right. Got an MRI with and without contrast.
The doctor called me with an MS diagnosis. ( I will see her this Wednesday)

Is it possible to have an MS practically without any symptoms? My MRI report says:

"Brain-a small lesion in the subcortical white matter of the left temporal lobe demonstrates nodular enhancement- 0.4cm in size.
There is also an enhancing 0.3cm lesion in the body of the corpus callosum.

Cervical spine- non enhancing T2 hyperintense lesion in the ventralmidline aspect of the upper cervical cord from C1 to the mid C2 levels measuring 1.7cmx 2.5x 0.3cm.
There is a 0.3x0.4 cm T2 hyperintense lesion without enhancment at the C5-C6 level as well.

Impression: Scattered subcentimeter lesions with involvement of the corpus callosum is described. Two small enhancing lesions in the left temporal white matter and body of the corpus callosum. Two additional non enhhancing lesions within the cervical cord. imaging findings are most indicative for demyelinating disease."

It seems to me I have some good # of lesions. The one in the cervical spine is quite BIG, but non enhancing. WIth such a MRI findings shouldn't I have more symptoms of MS? Not that I ask for them, but it seems weird.
I don't know much about MS. For the last few days I was trying to educate myself and I found this forum.
Maybe you can help me understand this disease. Most people have some symptoms first. I don't have any , unless my fainting is MS related.
Thank you for any suggestions.

Also- what is the difference between enhancing and non enhancing lesions?

[tortis]

WELCOME!

Hello and welcome, although I wish it was for a different reason. Lots of good people here with tons of experience with M.S. aka the MonSter.
Surf though all the sub forums and you will find lots of info.
Your fainting was probably the M.S. but I am not a Dr. Make a list to bring with you Wed. of all your questions, only the doctors can answer those kind of questions.
Once again Hello!
PEACE
Tortis

[jreagan70]

Hi bosman:

WIth such a MRI findings shouldn't I have more symptoms of MS? Not that I ask for them, but it seems weird.

Your presentation is definitely unusual because:

1. MS doesn't usually cause fainting. It can, though, if the neurological system that controls automatic body functions is affected. If and how that system in your body may be affected will reveal itself in time.
2. The spinal cord is pretty much a straight shot up from the lower back to the brain, with nowhere for electrical signals to go to avoid a problem. So to have spinal cord lesions -- particularly a large one -- not cause symptoms is definitely unusual.

But it is what it is.

I don't know much about MS. For the last few days I was trying to educate myself and I found this forum. Maybe you can help me understand this disease.

This is the best advice I can give you right now:
DO NOT USE INTERNET FORUMS OR SOCIAL MEDIA AS YOUR PRIMARY SOURCE OF INFORMATION ABOUT MS.

Hello everyone,
I am new to this forum. I am 39 years old.
Lats December I had a accident while skiing. I fainted and hit a tree. After that incident I had a CAT scan performed. Everything was fine. Just low pulse.

About a month ago I got up in the middle of the night to take a sip of water. I felt very thirsty. By the time I got downstairs, I felt "funny". Called my wife, and by the time she came down running I was already on the floor nearly fainted.

I went to the doctor since fainting twice already seemed not right. Got an MRI with and without contrast.
The doctor called me with an MS diagnosis. ( I will see her this Wednesday)

Is it possible to have an MS practically without any symptoms? My MRI report says:

"Brain-a small lesion in the subcortical white matter of the left temporal lobe demonstrates nodular enhancement- 0.4cm in size.
There is also an enhancing 0.3cm lesion in the body of the corpus callosum.

Cervical spine- non enhancing T2 hyperintense lesion in the ventralmidline aspect of the upper cervical cord from C1 to the mid C2 levels measuring 1.7cmx 2.5x 0.3cm.
There is a 0.3x0.4 cm T2 hyperintense lesion without enhancment at the C5-C6 level as well.

Impression: Scattered subcentimeter lesions with involvement of the corpus callosum is described. Two small enhancing lesions in the left temporal white matter and body of the corpus callosum. Two additional non enhhancing lesions within the cervical cord. imaging findings are most indicative for demyelinating disease."

It seems to me I have some good # of lesions. The one in the cervical spine is quite BIG, but non enhancing. WIth such a MRI findings shouldn't I have more symptoms of MS? Not that I ask for them, but it seems weird.
I don't know much about MS. For the last few days I was trying to educate myself and I found this forum.
Maybe you can help me understand this disease. Most people have some symptoms first. I don't have any , unless my fainting is MS related.
Thank you for any suggestions.

Also- what is the difference between enhancing and non enhancing lesions?

Hello everyone,
I am new to this forum. I am 39 years old.
Lats December I had a accident while skiing. I fainted and hit a tree. After that incident I had a CAT scan performed. Everything was fine. Just low pulse.

About a month ago I got up in the middle of the night to take a sip of water. I felt very thirsty. By the time I got downstairs, I felt "funny". Called my wife, and by the time she came down running I was already on the floor nearly fainted.

I went to the doctor since fainting twice already seemed not right. Got an MRI with and without contrast.
The doctor called me with an MS diagnosis. ( I will see her this Wednesday)

Is it possible to have an MS practically without any symptoms? My MRI report says:

"Brain-a small lesion in the subcortical white matter of the left temporal lobe demonstrates nodular enhancement- 0.4cm in size.
There is also an enhancing 0.3cm lesion in the body of the corpus callosum.

Cervical spine- non enhancing T2 hyperintense lesion in the ventralmidline aspect of the upper cervical cord from C1 to the mid C2 levels measuring 1.7cmx 2.5x 0.3cm.
There is a 0.3x0.4 cm T2 hyperintense lesion without enhancment at the C5-C6 level as well.

Impression: Scattered subcentimeter lesions with involvement of the corpus callosum is described. Two small enhancing lesions in the left temporal white matter and body of the corpus callosum. Two additional non enhhancing lesions within the cervical cord. imaging findings are most indicative for demyelinating disease."

It seems to me I have some good # of lesions. The one in the cervical spine is quite BIG, but non enhancing. WIth such a MRI findings shouldn't I have more symptoms of MS? Not that I ask for them, but it seems weird.
I don't know much about MS. For the last few days I was trying to educate myself and I found this forum.
Maybe you can help me understand this disease. Most people have some symptoms first. I don't have any , unless my fainting is MS related.
Thank you for any suggestions.

Also- what is the difference between enhancing and non enhancing lesions?

[jreagan70]

Hi bosman:

Another surprise you might is that forum software sometimes misbehaves, such as submitting posts without the Submit button being clicked, as happened with my earlier post.

To continue:
DO NOT TRY TO USE INTERNET FORUMS AND SOCIAL MEDIA AS YOUR PRIMARY SOURCE OF TECHNICAL INFORMATION ABOUT MS.

One of the disadvantages to having a chronic, complex medical condition is that people have to try to learn about their condition without the necessary background in anatomy, physiology and pathology. Without that, a person doesn't know how the pieces fit together and they can put them together in the wrong way, so things don't make sense or lead down the wrong path. Put that on the Internet with millions of people spreading misinformation, and learning can take a wrong turn very quickly. That means that at least half of what you'll read in forums and on social media about MS is wrong.

To start yourself in the right direction, stick to authority sites for your primary technical information about MS. The website of the National Multiple Sclerosis Society (www.nmss.org) is a good place to start. Websites of medical clinics like the Mayo Clinic, Johns Hopkins and the Cleveland Clinic are also good. The websites for the FDA-approved medications for MS (you can look them up on the NMSS site) also have sections containing technical information about MS. There are also some good websites written by individual healthcare providers. If the author has a healthcare-related degree, you can use the site.

Disregard sites by individuals who aren't degreed healthcare professionals. (If you're not sure, check the website for a credential.) There are thousands of sites written by people whose only credential is their need to express themselves about their experiences with MS. You don't want to follow those for technical information. (There's an exception to that, but now isn't the time for exceptions.)

Whatever you read on an authority site, check the information against another authority site for consistency and the benefit of repetition. Then you'll get better at telling fact from fiction when you read forums and social media sites. Whatever you read in forums and social media, check in against the authority sites for validity until you're informed enough that you don't have to. There's a lot of what people will tell you from their own experience that they believe is true but is factually false. And it's important that you, early on, don't fall into the habit of believing it just because they do.

There's so much to learn about MS that you won't be able to do it in days or weeks. With consistent study, it should take several months before you become facile with the information and how to incorporate it into your own experience. Internet forums and social media can be good places to ask about things you've read about and would like clarification on and to share experiences. But after that, if there's any kind of technical component to it, verify, verify, verify.

The next best recommendation I can give you is to find yourself the best MS specialist neurologist you can. You're already starting off with an unusual presentation. It's not in your best interest to just accept the first neurologist you encounter as the one you'll stay with. Many general neurologists don't have enough experience with MS to manage a routine case of it, let alone an unusual one. Even if you think the neurologist you'll be seeing is an expert at MS, it's a good idea to get a second opinion, especially because your case is unusual. It's possible that what you have isn't MS, so it pays to have more than one of the most knowlegable neurologists you can find looking at it.

To find a neurologist who is MS-knowlegable, you can contact your local chapter of the NMSS and ask for their list of neurologists in your area. That list is not a recommendation or authorization, and the neurologist you choose might still be a dud. But it can get you started in the right direction.

Another place to find an MS-savvy neurologist is at the website of the Consortium of Multiple Sclerosis Centers (www.mscare.org). On the homepage, go to the menu on the left side and click Directories > MS Centers. You'll be taken to a search page. Enter your state of choice and follow the links to see if there's an affiliated MS center there.

Right now there are some technical aspects to your presentation that folks can talk and speculate about all day. And some of them might. Under other circumstances I would bring them up now (and somone else might), but I think at this point they would just be too confusing since you don't have any background and context for them. Your MRI and radiology report are enough to send you for an MS workup. After your neurology appointment is a better time to introduce those, although you might not be any less confused then.

Most people have some symptoms first. I don't have any , unless my fainting is MS related.

Could be. Time will tell.

Also- what is the difference between enhancing and non enhancing lesions?

About midway through your MRI, you got an injection of a contrast medium called gadolinium. Areas (lesions) in your central nervous system that are currently, actively inflamed absorb the gadolinium. Lesions that aren't currently actively inflamed don't absorb the gadolinium. On the images after that, the lesions that have absorbed the gadolinium show up differently than the ones that didn't. That's called "enhancement," and the lesions are called "enhancing lesions." For verification, here's a link to a site by a degreed professional that explains that: http://ms.about.com/od/glossary/g/Gd_lesion.htm

[bosman]

Make a list to bring with you Wed. of all your questions, only the doctors can answer those kind of questions.

tortis- thank you for the advice. I will def. do that.

[bosman]

DO NOT TRY TO USE INTERNET FORUMS AND SOCIAL MEDIA AS YOUR PRIMARY SOURCE OF TECHNICAL INFORMATION ABOUT MS.

jreagan70- thank you for all the valuable advises.
You are absolutely right about the forums and other media. Unfortunately, in the past I had a chance to experience how other people reactions scared me to death, but the same medical procedures were not too scary to myself.
This time, the diagnosis is a lot more serious, that is why I am here looking for help and understanding.

Thank you for the links to the web sites.

I will def. seek second opinion. At this point I don't feel comfortable taking such a powerful medications without making sure this is the only way. As you advised I will verify, verify and verify.

Thank you.

ps. ( I am sorry for my poor English since it is my second language )

[jreagan70]

Hi bosman:

Your English is good! Some native speakers don't write English as well as you do.

After your neurology appointment, please come back and tell us how it went.

[Jessica0404]

Hi!

I was diagnosed in June. My mom has MS so I knew all about it when I was diagnosed. I was still surprised. I didn't think my symptoms were MS. Everyone is so different that my mom and I share only a few symptoms, which I didn't put together for awhile.

However, when I was diagnosed I did tons more research and realized I had more going on than what sent me to the neurologist. The fatigue and not sleeping well were things I wish I put together sooner. Talk to your doc about anything bothering you... It might be connected.

[bosman]

The fatigue and not sleeping well were things I wish I put together sooner. Talk to your doc about anything bothering you... It might be connected.

Thank you Jessica0404- how would the neuro know if for example: occasional constipation is a MS symptom and not just coincidence? Everybody gets those once in a while. I am afraid that anything can be seen as a MS symptom since it is CNS.

I guess I am still in a denial stage I only have RIS and trying to decide if I should go on meds or wait for the symptoms first ( who knows when will they occur?)

I read that 20% of people have MS but they are not aware of it. Symptoms are mild, manageable and never related to MS.

I wait till Wednesday with my speculations ...
Thank you again

[BadAttitude]

Hi bosman:

Your English is good! Some native speakers don't write English as well as you do.

After your neurology appointment, please come back and tell us how it went.

I saw this post and cracked up when the one above it showed bosman's area as New Jersey. I didn't see his explanation about English being his second language until scrolling down further. But I still laughed. Those "Joisey" accents are almost English...almost.

[bosman]

I saw this post and cracked up when the one above it showed bosman's area as New Jersey. I didn't see his explanation about English being his second language until scrolling down further. But I still laughed. Those "Joisey" accents are almost English...almost.

Now I'm laughing lol

One more thing that crossed my mind...
ON is quite common with MS. If my lesions are MS related, shouldn't I develop ON already ?

[jreagan70]

ON is quite common with MS. If my lesions are MS related, shouldn't I develop ON already ?

Not necessarily. ON affects about half of people with MS. The other half never develop ON. So you have about a 50% chance of not having ON, which is pretty good.

Besides, I've had enough episodes of ON for both of us already.

[foxglove]

Hi Bosman,

I was diagnosed back in July after a bout of optic neuritis earlier in the year. My MRI showed lesions on the brain and spine, one big unusual one on the brain... But the optic neuritis is pretty much the only symptom I can 100% relate to MS as of now, and it resolved in two weeks.
Because I have been pretty much asymptomatic otherwise (thankfully!) I was hesitant to start DMDs immediately as well and have basically just been treating myself with supplements, exercise and diet since then.

I have been monitoring my MS since, but my most recent MRI is showing some brain activity and because of that I plan on starting treatment (Still haven't decided which one, that's the challenge now! :/). Now that I can see what is STILL going on in my brain the whole diagnosis feels more real as a result. I think it has taken time to really accept the situation. It may take you some time as well, especially since you're asymptomatic. It's really hard to connect with what your MRI is showing when you're lacking physical symptoms. Especially when it seems like a pretty unusual situation. I am grateful to be in the health I am right now of course!


Definitely take some time to do research and like other people have said, make sure you are writing down a list of questions before your neurologist appointments. I did not do that for either of my two appointments with my MS specialist and I regret it.
If you need to get a second opinion, I definitely say do it. But try to make that appointment as soon as possible, because it's pretty hard to schedule appointments with proper MS specialists on short notice.

Everyones experience with MS is different.
Don't feel pressured to make big decisions until you are ready and have all the information you need to feel comfortable doing so. Take care of yourself. We all come to a place of acceptance in our own time.

The good thing is that it sounds like you got a diagnosis pretty quickly. Some people have to wait years or even decades to get a proper diagnosis. Being in limbo seems much worse than knowing.

Best of luck to you. You are not alone.

[Temagami]

Suggestion for your visit- take a dedicated notebook with you with your questions already written out and room underneath to fill in the answers. If your neurologist gets pissy about you having questions, that might be an indication that he or she is not the one for you. My first one was one from the group that saw me in the hospital and he turned out to be a dud, so donīt be afraid to seek a different neuro- they ARE different in expertise and manner.

Constipation is a possibility in that the nerve impulses are not sent efficiently to have the contractions to "move it all along." Eating more fiber, drinking more water and avoiding foods that plug will help.

multiplesclerosisnewstoday and medicalnewstoday have lots of current research articles.

Before you start a DMD, read the info on clinical trials b/c some of them preclude patients who have used certain meds prior to the trial and you donīt want to eliminate a possibility before you even know it exists. Do be pushy with your insurance co. to approve a DMD once you and your doctor agree on a plan. These meds cost a bundle and the ins. co. would rather drag out the approval.

You- your personality and your core/essence of you will not be marred by this. This is scary stuff for sure. Lean on the people in your life who are supportive. You will reorder your priorities as you deal with this and thatīs normal.

[bosman]

I can not even write anything right know...
Overwhelming..

You don't even know how you are helping me right now. I have so many questions, fears. How will my future be, work, family?

I really can't say anything more right now, but THANK YOU.

I will let you know tomorrow, how did my visit go.