Diagnosed and surprised - no symptoms.

[bosman]

I went for my first post MRI neuro visit.
As I was expecting, she confirmed MS.
I asked her what are the criteria in diagnosis MS, since I have no symptoms I questioned her on purpose. She said she's sure it is MS and if I want to be 100% sure I can go for spinal tap.

What is spinal tap?

As far as meds, she would like to start me on Tecfidera, but I have choice between that and Copaxone. How to choose? How are they different? All I know Tec is a pill BID, and Copaxone in injected.
I am not rushing to decide, but I will need to make a decision sooner than later.

Also, made an appoitment in MS Clinic for...March 2nd

[KateA2]

What is spinal tap?

This is a test that can be performed with or without X-ray assist (fluoroscopy). He procedure takes about 30 minutes total, with extra time to lay down afterwards. The doc inserts a small needle into the lumbar spine ( between vertebrae) and draws a small sample of cerebrospinal fluid. They numb up the area beforehand.

You can be sore in the draw area for a couple of days...some people get a bad headache afterwards, but if this happens you can get treatment.

I've had two taps, and had no issues. They check the fluid for proteins and other markers typical of MS...to be used as another diagnostic tool. For myself, both my taps were negative for MS markers (though I have MS and typical lesions on MRI.)

Recent diagnosis is really scary and overwhelming. Fortunately there are good treatments available now. You've caught your MS earlier - which means you have opportunity to treat earlier ( which leads to better long-term outcomes).

[jreagan70]

Hi boseman:

Thanks for the update.

I'm glad you made an appointment with an MS clinic, because what you've told us about your neurologist has left me a little unsettled. From what you've told us, either:

1. Your neurologist doesn't herself understand MS well enough to know that what she has told you isn't completely accurate, OR
2. Your neurologist does understand MS, but has left some of the facts out of what she has told you because she believes that, by withholding some of the facts and somewhat misleading you, your case will be easier for both of you to handle.

Personally, I don't like either one of those possibilities.

I said in my earlier post that there are some details that you should know, but that it might be too confusing to bring them up so early. Now I think it's necessary, even though it might be confusing, because it might help you to get a broader picture of what's going on with your situation and what you might choose to do about it.

So up front, it bears repeating that your case is unusual, which makes it complicated.

I asked her what are the criteria in diagnosis MS, since I have no symptoms I questioned her on purpose.

Yes, there are criteria for diagnosing MS. They're called the McDonald Diagnostic Criteria, and they were most recently revised in 2010 to help simplify the diagnostic process. They were developed by an international panel of MS experts, so most prudent neurologists follow them. It isn't necessary for a doctor to follow them in diagnosing MS, but most prudent neurologists do.

This is the article that appeared in the medical literature to introduce the updated criteria:
http://onlinelibrary.wiley.com/doi/1...ana.22366/full

It's interesting to me that you're already familiar with radiologically isolated syndrome (RIS). The key point here is that RIS may not be, and sometimes isn't, MS.

The criteria for diagnosing MS require that a person have two episodes of signs/symptoms that are consistent with a demyelinating event -- that is, nerve damage that comes from inflammation damaging the protective layer of myelin that insulates nerves in the central nervous system. Demyelination causes particular kinds of symptoms, so nonspecific symptoms like pain and tiredness don't usually count as an episode.

Also, there should be evidence of lesions on MRI that is consistent with MS. The McDonald criteria rely heavily, though not exclusively, on MRI evidence. But it can't be just any abnormality on MRI -- it must be lesions that look like, and are in the locations of, lesions that are typical of MS. There are other kinds of lesion that can appear on an MRI, and they don't count in the MS criteria.

Usually, those two episodes include at least one in which the person has noticeable symptoms. Usually both episodes do, but evidence on an MRI can count for one of the episodes, even if there aren't any symptoms.

The key point in those two episodes is something called dissemination in time and space. That means that the lesions and/or symptoms must be separated in time and separated in location.

You asked earlier about what enhancing lesions are. Enhancing lesions are actively inflamed lesions that absorb the gadolinium contrast "dye" and show up differently on an MRI than older, not actively inflamed lesions. When an MRI shows enhancing and nonenhancing lesions, it means that some amount of time passed between the onset of the older, nonenhancing lesions and the newer, enhancing lesions. That meets the criterion for separation in time." The different locations of the lesions shows that the lesions are separated in space.

So that's how an MRI can establish separation in time and space without a person ever noticing symptoms. You didn't say whether your MRIs showed enhancing lesions. But if your MRI showed both enhancing and nonenhancing lesions, that could be how your neurologist decided that you meet the diagnostic criteria for MS even though you don't recall having symptoms.

The other criterion is that the lesions have the size, shape and location of lesions that are typical of those found in MS. It sounds like they might, based on your neurologist's readiness to make the diagnosis of MS. But that's something that you'll have to verify. Because it might also be that she didn't even look at that and is just assuming you have MS because you have lesions.

What is spinal tap?

A spinal tap is the insertion of a fine needle into the space around the spinal cord in the lower back to withdraw some of the fluid that circulates in the central nervous system. That fluid is then analyzed to look for signs of abnormalities like infections and abnormal proteins. You can search for it on google for more detailed information. A spinal tap is also called a lumbar (for the lower part of the spine where the needle is inserted) puncture.

She said she's sure it is MS and if I want to be 100% sure I can go for spinal tap.

That's where a red warning flag went up for me. 10 to 15% of people with MS have normal spinal taps (meaning that ther are no abnormal proteins), and the abnormalities seen in MS also occur in other conditions, so a spinal tap is NOT a 100%-certain way to find MS. So it bothers me that your neurologist would say that it can tell with 100% certainty whether you have MS. The test is only helpful if it's abnormal. A normal test does not rule out MS, so it isn't clear from that whether your neurologist actually knows what she's talking about or just said that because it was the easiest thing to say. (Again, both of those scenarios bother me.)

As far as meds, she would like to start me on Tecfidera, but I have choice between that and Copaxone. How to choose?

There are more medications for MS than that. It sounds like this is one of those times where a doctor picked two medicines just to make it easier for the patient to make a first choice. And that's not necessarily a bad thing, because a person has to pick something to start on, and having the doctor recommend a couple can make the choice easier.

But there are also valid reasons why one of the other medications might be better for you, based on where your lesions are. That's where (1) educating yourself and (2) getting a second opinion and advice at the MS center can be helpful.

To learn about the available medications, try these links:

http://www.nationalmssociety.org/Tre...MS/Medications
http://www.mymsaa.org/about-ms/treatments/long-term/
http://msfocus.org/Treatments-for-mu...sclerosis.aspx
http://www.mscare.org/?page=dmt

(These links were posted earlier today here at MSWorld, but two of them in that post didn't work when I tried them. The ones above went through when I tested them.)

Because you aren't having any obvious signs or symtoms, it looks like there's no pressing need for you to start on a medication or get your second opinion. But it might be worthwhile for you to call the MS center every week to see if they've had a cancellation and you can get in sooner. An unusual case like yours can benefit from every advantage you can give it.

In the meantime it's also a good idea to get your own copies of all of your medical records, including the disc of your MRIs. It can be very helpful to be able to bring your copies of your records with you to your appointment at the MS center. Sometimes it happens that records get sidetracked when sent to other doctors (it's happened to me a couple of times). If that were to happen, you'll have your records with you and your doctor can look at them and proceed with your exam.

It sounds like you have some homework to do before your next neurology appointment.

[bosman]

Fortunately there are good treatments available now. You've caught your MS earlier - which means you have opportunity to treat earlier ( which leads to better long-term outcomes).

KateA2- thank you for those words. I needed that. I am trying to read a positive MS stories. I want to stay positive, not scared. I have a family I need to take care of, a child.

[bosman]

Hi boseman:

It's interesting to me that you're already familiar with radiologically isolated syndrome (RIS). The key point here is that RIS may not be, and sometimes isn't, MS.

exactly!!!

You didn't say whether your MRIs showed enhancing lesions. But if your MRI showed both enhancing and nonenhancing lesions, that could be how your neurologist decided that you meet the diagnostic criteria for MS even though you don't recall having symptoms.

My MRI showed 2 spinal non-enhancing lesions, quite big 2.5x1.7x0.3cm and another one smaller ( no symptoms with such a big damage??) and 2 enhancing in the white matter 0.3 cm and 0.4cm, so I meet the criteria here

The other criterion is that the lesions have the size, shape and location of lesions that are typical of those found in MS. It sounds like they might, based on your neurologist's readiness to make the diagnosis of MS. But that's something that you'll have to verify. Because it might also be that she didn't even look at that and is just assuming you have MS because you have lesions.

I will have to have this conversation with that Clinic doctor. I have a copy of my MRI disc , so I hope we will go over that part.

might be worthwhile for you to call the MS center every week to see if they've had a cancellation and you can get in sooner. An unusual case like yours can benefit from every advantage you can give it.

my wife's words ))

In the meantime it's also a good idea to get your own copies of all of your medical records, including the disc of your MRIs.

I have everything. I was even trying to get a copy of my MRI that I had done for some different reason about 15 years ago, but no luck.

In the meantime I learned how to respond, paste etc on the forum.

Also, now my wife serves fish every day lol ( Omega3 or something )

[Teekybird]

Hi Bosman,
I talked with you in chat a few nights before your appointment on Wednesday. My biggest advice for you is to not worry too much. If you have had MS and not even known it, then your whole experience and life (with MS) may very well be like that.

I also felt wary about the comment on the spinal tap. What Jreagan said is true. It definitely is not the measure to prove 100% that you have MS.

The other thing that I would suggest is make sure you are seeing a neurologist that specializes in MS.

March seems like a really long time to wait for your next appointment? Would it be in March then that you would be deciding on a medicine? Definitely read up on both medications.

There are lots of things to consider when picking a medication. Educate yourself and ask questions.

Finally, what is your native language? I speak Spanish if that helps! (

[bosman]

Finally, what is your native language? I speak Spanish if that helps! (

Thank you Teeky, but it doesn' t help. Polish.

I appreciate all the advises. I learn everyday. I learn about MS -something new and scary, but on the same time, something I need to learn to live with.

I am afraid of the side effects of the meds, but realize I have no choice. Maybe my fainting was a way of my body to tell me that something is going on?
My first reaction to a DX was to ignore it and live my life the way I did, but I cant really do it knowing what I know now.

Since I am asymptomatic do you think the medication can trigger symptoms? In other words, is it possible to develop symptoms after I start taking meds?

[KateA2]

Oh you're Polish I've visited Poland a few times (Kraków, Bialystok, Rudkoska, Warsaw) but my Polish is terrible so I won't embarrass myself...apparently I learned how to speak a formal/old-fashioned Polish--made people laugh!

On the other hand, your English is very good.

Anyway, to answer your question about medication:
it won't bring on any symptoms that weren't already going to happen. Indeed, hopefully you never have symptoms, or if you eventually do, they remain mild. It is one of the most frustrating aspects of MS- not knowing when it may strike.

MS is usually slow...people have it for decades. It is important to live life fully each day, to eat well, get enough rest, exercise, minimize stress, no smoking. The medications are to augment a healthful lifestyle and keep inflammation at bay.

You have time to think and decide which treatment options are right for you. Personally I like oral medicine better than shots...somehow I feel less like an invalid (and it frees up space in my 'fridge for goodies. )

[bosman]

Oh you're Polish I've visited Poland a few times (Kraków, Bialystok, Rudkoska, Warsaw)

Hi KateA2- thank you for your response. May I ask what made you go to Poland?
i personally love Krakow.

it won't bring on any symptoms that weren't already going to happen.

would be nice, would be less scary to take meds

[bosman]

But it might be worthwhile for you to call the MS center every week to see if they've had a cancellation and you can get in sooner. An unusual case like yours can benefit from every advantage you can give it.

Yay, I was able to move my app from March to January 20!!!

[jreagan70]

Yay, I was able to move my app from March to January 20!!!

Który jest bardzo dobry!

[bosman]

Który jest bardzo dobry!

wow, very impressive jreagan70
Point for an effort

[hunterd]

dalej snazit , budete mat moznost sa pohybovat hore viac. Myslim , ze mam vsetko v poriadku , ale moj slovensky nie j dokonali. that was more than enough for my brain this morning. My great grandmother was from Bratislava and one of my other great grandparents was from Kiam (sp). WELCOME TO MSWORLD!.

[bosman]

dalej snazit , budete mat moznost sa pohybovat hore viac. Myslim , ze mam vsetko v poriadku , ale moj slovensky nie j dokonali..

Not Polish but I can still understand everything. All those Slovak languages )


I was just thinking (scary) ...
Does is make any difference when, do I try to get an authorization from insurance? Is is better to do it now- end of the year, or should I wait until 2016 and then try to get my meds approved?
Does it make any difference?

[KateA2]

I visited Poland the first time in 2000, to attend a family wedding (my step-mom is Polish, nephew got married.) I've been back a few times since. Kraków is also my favorite city: beautiful architecture, great fine-arts galleries and cafe-culture, went dancing most nights, also stayed at a few lovely baroque hotels...I felt like people were much friendlier than Warsaw.

....

Hmm, perhaps get med approvals ASAP -- as it can take awhile to process. You'll probably need to be reapproved each year, unless you get an "in perpetuity" approval from insurance (I have this somehow after having to renew each year for 4 years.)