Optic Neuritis, Spinal Lesion, Brain Lesions

[thestraltrainer]

Hi, I am new to this site. Here is my story. For the past two years I have been having some weird intermittent neuro symptoms. Sometimes when I turn my head a certain way or look down I get an electric shock sensation down my spine and into my arms and legs. I will also have days where my arms are numb, weak, and extremely clumsy.

Then in February of 2016 I was feeling really exhausted and fell asleep at work (this is absolutely NOT normal for me). I just couldn't stay awake and fell asleep in my seat for multiple hours. I chalked it up to pushing myself too hard. Then in October I got optic Neuritis. I went to the ER when it happened because it was pretty alarming.

After being diagnosed with optic Neuritis I was referred to a neurologist. He did an MRI of my brain and C-Spine. There were white matter lesions on my brain and also one on my spine. My neurologist said the ones on my brain could be from a number of things ( I have had migraines since I was very young ), but the one on my c-spine was concerning for MS. So far he has done two MRIs since October and it looks like the spots are increasing and moving. He is calling my current condition clinically isolated syndrome and I am having a repeat MRI in 2 weeks. He said that if there were any new spots he would want to diagnose me with MS and start me on medication.

On top of all this my husband and I took our son to an outdoor activity that was really hot and I got really hot and my vision went blurry and I couldn't even lift my sons car seat because my arms were so weak and clumsy. Does this sound like what has happened to other people? My symptoms are strange, but they don't seem that severe. I've also had blood work done and cardiac tests and they all seem normal.

[Carolinemf]

Hi,
I am sorry but what you are describing does sound very much like ms.
But wait until your neuro completes all the tests and evaluate from there.
How old is your son? It is a statistical anomaly that a lot of women have there first presentation after giving birth. Unknown why .
There are quite a few options for patients now. So the earlier you are diagnosed the better you can manage symptoms.
Ask lots of questions and educate yourself about ms and mimick illnesses.
There is a lot of info on here and many heplful members too.
Good Luck and keep us updated, how you are doing.
Caroline

[pennstater]

Sorry you are feeling these symptoms. The sensation when you bend your neck is called L'Hermites. That is what led to my diagnosis.

There are studies that support starting MS treatment drugs once a diagnosis of clinically isolated syndrome (CIS) is given. The meds are aimed at reducing relapses and slowing progression. All studies show the earlier the meds are started, the better.

Did your neuro do your MRIs with contrast as well? This dye will "light" up areas that have active inflammation versus lesions that were from previous.

I hope you get answers quickly. Regardless of next MRIs, I would talk to neuro about CIS and treatment options.

Lots of luck.

[jreagan70]

Hi thestraltrainer:

Is your neurologist a general neuro? He sounds OK. It's hard to know how good he is without more information, and it's also hard for you to describe what's happening because you haven't gained enough technical knowledge yet. But from what you've described so for, he sounds OK. Certainly much better than some of the stories of really untrained, incompetent neuros I've read and heard about. Your neuro has a lot of information to work with in your case. It's more of a textbook case that a general neuro would/should recognize, so this isn't a situation where we get to see how deep his knowledge is. Not exactly a situation that separates the men from the boys.

With a condition like MS that can be complex to diagnose and will be life long and chronic, it pays to get a second opinion from a neurologist who emphasizes MS in their practice. They're usually referred to as MS specialists, even though there is no board certified specialty in MS.

So no matter what your next MRI shows or what your neurologist decides about a diagnosis, it's a good idea to:

1. Get your own copies of all your neurology records, ophthalmology records related to your optic neuritis, MRI CDs, radiology reports and lab reports ordered since these episodes started. You may have to pay copying fees.
2. Find an MS specialist at a university medical center or specialty neurology or MS clinic. You can look for one by using the Find an MS Care Provider feature at the website of the National Multiple Sclerosis Society (NMSS): http://www.nationalmssociety.org/Tre...ers-in-MS-Care. Enter your zip code and check Neurologic Care to find a neurologist and/or Centers for Comprehensive MS for a multi-specialty clinic. You can also look for an MS specialist and/or MS specialty clinic at the website of the Consortium of MS Centers (CMSC): http://www.mscare.org/search/custom.asp?id=881. Enter your country and location and click Continue to find specialists in your area.

One way to determine how good your first neuro is is to get another opinion from an MS specialist. After a second opinion, you might decide to continue with the MS specialist or you might want to continue seeing the first neuro.

Another reason to get a second opinion from an MS specialist is that a fairly high number of people who are diagnosed with MS don't actually have MS. At the recent meeting of the CMSC, one of their studies showed that a full 33% of a survey sample of patients sent to CMSC neuros had been misdiagnosed with MS. Another one of their neuros said that almost twice that many -- 60% -- of patients sent to him for MS evaluations or second opinions didn't have MS. The details you've given us so far are highly suspicious for MS, but a second opinion from an MS specialist is still advisable.

You can learn about the McDonald diagnostic criteria for MS here: http://onlinelibrary.wiley.com/doi/1...ana.22366/full. Those are the criteria your neuros should be evaluating you against in making -- or not making -- a diagnosis of MS. The article also covers Clinically Isolated Syndrome (CIS).

Since you've already been diagnosed with CIS, it will be beneficial for you to learn as much about CIS as you can and how it relates to MS. You can search for more information about CIS and MS at the NMSS website. Try to get a good basic understanding of what MS is and how it works. You're very early in the sequence right now and your understanding of what's going on with lesions is actually a little off track (e.g., they're not "on" your brain or spine -- they're inside your brain and spinal cord). The time to get on track and get the facts straight is now in order to make your learning and understanding about MS and adaptation easier in the future.

For facts and learning, stick to reputable MS and medical websites. No matter how comfortable you get on message boards and in forums, do NOT try to learn facts there. Misinformation runs rampant and you'll end up either frustrated or perpetually perplexed because you didn't get the right foundation from the beginning. Even so far in this thread, there have been a couple of things offered as facts that aren't quite right. If you buzzed in and gave those answers on MS Jeopardy, Alex would say, "Sorry, no" and you'd lose money. And pleading, "But Alex, I read it in an MS forum!" is not going to get you your money back. Do you want to risk losing when it comes to knowledge about your health?

Does this sound like what has happened to other people?

Yes, those symptoms are common with -- but not exclusive to -- MS. So you do need to go through the full diagnostic process to pin down what's causing yours. And then get a second opinion.

My symptoms are strange, but they don't seem that severe.

When you learn more about how the central nervous system works, you'll find that -- while they're indications of abnormalities in the system -- your symptoms aren't strange at all. And even though they don't seem severe, they're indications that something is definitely wrong. You don't want to wait until you get hit by the MS (or other condition) version of a speeding freight train to start taking them seriously.

Please let us know what you find out form your neurologist and what your plans are.

[pennstater]

Sorry if anything I said is incorrect. Good luck on your journey.

[Carolinemf]

Hi Kathy,
Don't worry about giving Incorrect opinions and sharing your experiences.
Neither of us claimed to be neuros and all knowing in regard to diagnosis just tried to be helpful.
In fact all three of us who have answered Thesraltrainer have pretty much said the same thing. Just used different jargon.

I really wish our new member all the best with the following stressful time regarding diagnosis and hope he/she is not put off returning to MS world by the criticism of other members opinions.
This is really a very rare occurrence as we all are dealing with ms or the possibilty of it and are here to support each other.

Wishing you well.
Caroline

[AmyForever]

Hi and welcome to the forum, it not clear from the description it its MS. Your doc is the best person to seek advice from, hope you make the right choices...Good Luck!!

[thestraltrainer]

Thank you all

Hey guys,

My repeat MRI isn't for another week, but I appreciate the responses! I know that any illness can present differently in people, but I appreciate the input. I was just so blindsided by this appointment, so it was nice to hear from others who had similar experiences. I hope no one is worried about expressing their different experiences because hearing from multiple people was really helpful to me.

I'm having a lot of problems with this hot weather, and I'm going to tell that to my dr in case it matters. I know someone asked if my neuro was general or a specialist and he is general but his partner at the same practice is an MS specialist. My dr is just the one who was on call when I went to the ER with optic Neuritis. If they do start trying to diagnose me I have decided to check with his partner for his opinion.

[Carolinemf]

All the best with your apt,
Caroline.

[thestraltrainer]

Well there you have it

Hey everyone, I had an MRI done yesterday. They had the MRI read by a neurologist/radiologist and found not only new lesions but inflammation of my left optic nerve. He feels with my clinical picture and the progressing scans that I do have MS and am going to be starting treatment.

[Carolinemf]

Well I don't think its right to congratulate some one on being diagnosed with ms , but it can be an enormous relief to know that' its not all in your head' the 'other' way. So i hope that helps.

Let us know what treatment you are considering etc and
all the best
Caroline

[pennstater]

Hey everyone, I had an MRI done yesterday. They had the MRI read by a neurologist/radiologist and found not only new lesions but inflammation of my left optic nerve. He feels with my clinical picture and the progressing scans that I do have MS and am going to be starting treatment.

Just wanted to see how you are doing. I am sure overwhelmed. Let us know how you are.