Cortisone Treatment Recovery Question

[blueweb]

I posted this in the neurological forum as well, but since these are the same symptoms an MS patient would have, I thought it might be helpful to ask here too.  

In April, in the span of about 4 days I developed double vision and tingling/slight numbness in the left side of my body (lower arm, lower leg, side of head, ear, etc.)  I ended up at the neurological center and after 2 MRIs, a Lumbar puncture, and blood work, it was determined that I had a demyelination episode.  They found a 3 mm lesion (plaque buildup) on my brain stem that was crushing a nerve and causing said issues.  They didn't have enough evidence to say it is MS or anything else at this point.  Only a one-time occurrence, which she said is not common, but not rare either.  

Eventually, they treated me with 3 high doses of cortisone steroids via drip.  After this, the major problems went away after about 3 weeks.  However, still now, 2.5 months later, if I look to the far right or down (such as laying far back on a recliner and looking at the TV) at something somewhat distant (esp. text) my vision will start to blur and even tend to try to split to double vision again.  I can "reset" it by looking to the left or closing my eyes for a second.  

I was just wondering, how long does it take me to fully recover?  I know neurological problems take a long time to go away, but I just find it strange that I am still having some issues with my eyes after the treatments worked so well at the major symptoms.  Anybody have anything similar?  In my searches on the internet, I have not found many cases with people having one-time cortisone treatments (other than long-term, which I am not doing).

Thanks!

[sllowe]

Hi Blueweb,

Adding on a welcome to you!

Hoping this bump helps you meet more of us and those of us too with CIS.  Great CIS interp/info Doc Q -

-shell

[blueweb]

Hello!  Just a quick follow-up.  I went and read about Clinically Isolated Syndrome that you mentioned above and it seems really quite similar to what the doctor explained to me.  

http://www.nationalmssociety.org/about-multiple-sclerosis/diagnosing-ms/cis/index.aspx

The way I understood it from the DR was that I had a monofocal episode, the only found 1 lesion (they did 2 MRIs to be sure), although that single lesion caused 2 symptoms, double vision and numbness.  

Then there are the high risk and low risk for developing MS from CIS.  The way it sounded to me was that she could find no evidence that this was the onset of MS, in fact, she and another doctor seemed quite resolute to let me know that they did not think it was MS at this time.  (they did however concede that they could not determine whether I would develop another episode and that if that did happen, of course MS would be a definite possibility.)  They stated that they think it was brought on by an infection or some other trigger, which she stated she had seen before.

So, I did not get the feeling that they had ruled out MS, but I did get the feeling that they felt that, through whatever evidence, I did not have it during that time.  I left the hospital and treatment with the feeling of a "wait and see" attitude in regards to if/when a second episode would occur.

So, I guess I just wait and see... :-/

[blueweb]

Hi, well, she did discuss that there is the possibility that this is MS.  She only said that there is really no way to know unless it reoccurs.  So, now she just said to live my life normally and if it comes back, then there is then more evidence to support MS, but that at this point, they cannot make that claim.  

At the moment, I am living in Finland, apparently the country with the highest percentage of MS per capita of any country.  This is assumed to be from the lack of vitamin D (with the long dark winters).  Dr told me that only .2 % of people living on the equator have MS, by contrast.  I grew up in Texas, with loads of sun and no family history at all of MS, so I just don't see how it could have happened (if indeed it has).  Anyways, thanks for all the info.

I assumed that I would just have to keep waiting to get better and let my body deal with it.  I guess I should be thankful that the cortisone worked so well to begin with and that I can see properly most of the time and don't have numbness anymore...

[Quixotic1]

Hi, and welcome to the forum!  I'm sorry you have had such a thing happen, and we all know what a stop it puts to your quality of life.  There are many people here who have had such a "single demyelinating event" and are waiting for the next step.

It is quite common to be treated with a 3 to 5 day coure of IV steroids after suffering such an event.  From the nature of your symptoms, I agree that it appears to have been an episode of demyelination.  But, I differ a little in the interpretation that was apparently given to you by your doctors.  I do not think that MS should have been put aside so quickly.

85% of MS is of the Relapsing-Remitting type.  This means that the person has attacks of symptoms (which can be one or a combination of many dozens of symptoms).  The attacks are separated by periods of time from a month to years.  Attacks may cause symptoms that linger for a long time or that are permanent.

Far and away the most common cause of a demyelinating event is MS.  So, the odds are that what you suffered was the first attack of MS.  The symptoms of double vision and one-sided numbness are extremely common with MS.  With just one attack, they cannot diagnose the disease.  However - and this is a big "however" - with symptoms such as yours the neurologist should have given huge consideration to something called a CIS - Clinically Isolated Syndrome.  This is a condition exactly like what you have suffered, a first attack and some abnormal physical findings on exam.  When the MRI shows even a single lesion the odds that this is MS rise to about 80%.  With two or more lesions the odds are greater than 90%.

The fact that your lesion is on the brainstem is further evidence (but not proof) that this is MS.  The lesion on the brainstem is quite likely what has caused the double vision, as the nerves that control the movement of the eyes come from the brainstem.  You describe a CIS with Brainstem Syndrome, one of the most common kinds.

So, even though you only have a single brain lesion and MS "usually" has many more, you may have just suffered your first MS attack.  The reason I explain this is that the wisdom in the field of MS is to consider beginning one of the MS drugs (known as DMDs or Disease Modifying Drugs) when someone has a CIS to slow the further onset of the disease.  It doesn't make sense to wait for a second attack (in my mind) because MS is actively damaging the brain and spinal cord even between attacks.  It might be a long time before the next attack.  You should have all the facts so that you could make an informed decision.

Now, I am only able to say all this given the info you gave us.  I may be wrong and this might be a isolated demyelinating event.  But, these are not common.  They are far less common than MS.

Did your doctors discuss any of this with you?  I believe that you should ask your neurologist about this and if he/she isn't interested in discussing it, you should seek a second opinion from an MS Clinic.

Just so you know, I am a physician with MS and I study the literature so that I can give accurate advice.

Your actual question is how long will it take for the double vision to go away.  There is no answer.  Healing of the myelin sheath around the nerves can happen within a few days to months or years to never.  There is no way to predict this.  The steroids you received did what they were going to do within the first couple weeks or so of getting them.  Anything beyond that is up to your immune system and the repairing abilities of your central nervous system.

So, you have had a "classic CIS with brainstem involvement and a positive MRI."  The more aggressive neurologists in the field would be considering beginning a drug to slow this down, because it is (or will be) very likely MS.  I would have to go back to the studies to tell you exactly what risk it is of going on to become definite MS and I will do this.  I believe that it is about 80%, but I will check for you.

The diagnosis of MS depends on having 2 or more attacks of symptoms suggestive of demyelination and the finding of 2 or more separate areas on exam that show a neurologic deficit.  You have had only a single attack, but I suspect that you already have the two different abnormalities on neuro exam - one for the double vision and another that shows decrease sensation in some part of the left side of your body.  We have an article that describes in detail the diagnosis of MS.  If you wish to wade through it.  Here is the link.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

I hope you stay around for more support and for people to share their experiences.  Also, people who have had a CIS may stop by and give their info.  They may also tell you that my information is usually good and I rarely led people astray.

Welcome again.

Quix