Had my MS specialist appo today, not sure what to think

[schnauzerlady257]

I haven't posted lately because I was just waiting and waiting for my specialist appointment.  Well, I was kind of disappointed in my appointment and I didn't particulary care for the doctor or her demeanor.  

Quick recap of my issues...numbness and tingling in hands and feet, down spine and around middle.  Extreme fatigue and loss of some reflexes in my hands.  Nerve pain in arms.  I have one lesion on my spine and my CSF was abnormal for IgG synthesis (3x normal range) and greater than five oligoclonal bands.

My regular neuro wanted to go ahead and treat while waiting on the specialist, but I decided to wait for my appointment with the specialist.  Specialist did neuro exam and said that I have CIS with a 50% chance of developing MS in the future.  When I went over my complete history she looked like she had never heard of nerve pain before.  She kept saying "Are you certain it's not muscle pain???"  Yeah, I think that I know the difference.

Anyway, she said that I didn't have enough lesions to go forward with treatment, that she is suggesting to my neuro that we do a repeat MRI of the brain to see if there were more lesions, and if not, then wait 6 more months or until I have another clinical attack to treat with DMTs.  She said that that's better than treating me with uncessary drugs.

I don't know what to feel...I asked about Copaxone, because my regular neuro was considering it, and she said that it wasn't FDA approved for CIS, which is not true.  I didn't call her on it, but I read the news article on the MS society website months ago.  

I'm not sure what to think...I mean, I'm not anxious to take meds, but at the same time I'm not thrilled with waiting to see if more damage occurs to my CNS.  I'm surprised because my regular neuro said that she usually always agrees with his diagnosis, but she clearly didn't in my case.  I will talk with him next week most likely.  

Opinions?

[schnauzerlady257]

Well, my regular neuro agreed to order another MRI, but other than that he wants to wait on those results before looking again at treatment.  I am still going to push for treatment, but I'm afraid that he seems to be backing off based on the specialist's recommendation.  :(  Meanwhile, I have an appointment with a therapist because I just really need someone to unload all this frustration on instead of my poor husband.  I just am feeling overwhelmed by all this right now.

[Udkas]

Hi thanks for the thought provoking info.  Would these stats apply if you have had an episode of TM?  I have strong evidence of two separate areas of damage in my central nervous system this opinion has been shared by two different neuros as well, they both have said the same thing but I have no lesions on MRI.

Both neuro's reckon they are there but can't be seen, I find this weird, and almost doubt them, I have gone 14 years now since my 'big attack" of TM, and have had a few things in the recent two years that could be migraine but could be more activity, I had a brain MRI done 2 years ago at the beginning of my new happenings and I think he is planning to do one again early next year but I have had a couple of spinal ones done (one each year), since going to new neuro.

So do I still have a big chance of developing MS?  My neuro told me that I had about as much chance as the rest of the population of developing MS now, he said it was possible but after so long not likely, he seems to think my TM is repeating, which from my reading was even more rare and only a 3 percent chance.  He is saying it has repeated on what I have told him and evidence again on exam, he reckons he is finding new damage but again MRI showed nothing to verify that.

I am so, so, so, confused.

UDkas.

[schnauzerlady257]

I was able to get the link to work, thanks!  Wow, that is very helpful info and definitely not mentioned even remotely by the specialist.  I watched the podcast with my husband and explained things to him as the doctor went along, and he's much more on board with treatment now instead of later.  He was also shocked at the 90% factor considering that I'm only 32 and am likely to have regular MS by my mid-forties.  That really hit home for him since his mother has a chronic, debilitating illness that hit when she was in her 40s.

I am going to print off some of the info for my regular neuro and see what he says about the whole mess.  

Thanks again for all that great info!!!

[raekay35]

Please know that you are not alone in your quest to find answers and start treatment.  I myself just dealt with exactly the same thing that you are dealing with.  I saw an MS Specialist in early Dec...7 brain lesions, consistant with MS, greater that 5 O-bands in CSF, abnormal neuro exam, prominent tremor in right hand (which I now take medicine to control), dizziness, falling down, brain fog, blurry vision, etc...all labs negative for all mimic diseases/disorders...EEG and Evoked Potential Tests normal, howver, I do have decreased light reaction in pupils and optic disc pallor is irregular.  I was told by the MS Specialist that I didn't have a large enough lesion load, and that although my vision exam was abnormal that I should see an eye doctor to make sure it just isn't my eyes instead of a problem with the optic nerve.  (actually this part he didn't say anything about, I got a copy of his dictation and it was in there.)  He said that we would wait 6 mnoths, redo a MRI get together again and discuss the next step.  He listed me as "probable MS"  I came back and saw a Neuro closer to home 4 days later and I think because I was just at the MS Clinic he didn't want to override what that doc was thinking so he said that he agreed, however, I do have to go back and see him again in January, so we'll see where this takes us.  Please try to have a happy holiday season and know that you are not alone in the quest for answers!!!!

Rachel

[jensequitur]

Not to mention that Copaxone has been shown to help prevent the conversion of CIS to CDMS.  Craziness.

[Quixotic1]

I hope everyone heard my words that this MS neuro that SL saw is WAY behind the times.  The risk from what SL has told us is about 40% at 7 years and close to 90% at 14 and 20 years to convert.

the whole thrust of the current thinking on MS is to PREVENT damage and NOT WAIT for it!  Sheeesh!

Try this link and please set any Pop-Up Blocker to allow Pop-Ups.

http://www.peerviewpress.com/?category=Neurology

Now look down the page to

2009-10-01 inPractice: Selecting Immunomodulating Therapy in Relapsing-Remitting Multiple Sclerosis

Course Director
Timothy Vollmer, MD
University of Colorado
Denver, Colorado  

choose to watch the podcast or download the transcript.  Then look for the slide that shows the vertical bar graph on lesions at baseline versus risk of converting.

Once you all see this you will see why I am so frosted at hearing this old nonsense like this she neuro told you.  It is antiquated BS!

Signing off for the festivities!

Quix

[slightlybroken]

"I was just a bit appalled that the specialist kept saying "we have to give you a chance to fail the MRI before jumping on treatment".  Why do I need a chance to fail that might affect my lifelong abilities?  I asked that and she never addressed it. "

I never understood this myself either...Why would the doctor want you to add more damage to yourself before diagnosing the problem, that could possibly effect your abilities, when all possibilities are looked at? The only answer I could ever come up with is, it seems some doctors are always looking for the easy DX, and the easy answers. I guess it comes down to making it easier for them to DX....just my opinion.

I hope your doctor will be strong and DX. I'm in the same boat...SS LIMBOLAND. Have a great Christmas! :)

[schnauzerlady257]

Thanks for the info in your post!  I couldn't get the link, but I'll check back after Christmas.  

Yes, my brain scan is clean, which the specialist said meant that my MS risk is lower?  Also, the I can't remember the name of the lost reflex, but both my neuro and specialist said that I have lost one reflex in both hands and I have reduced sensation to heat, cold, vibration, etc.

Funny you should say all that about my risk being 90% in 14 years, because according to the specialist if I don't develop any lesions in my brain in the next two years my risk of developing MS is almost nil.  She said nothing about the risk after 5 years, except that it would be rare to develop it that far out with nothing happening in the next few years.

My last brain scan was in August, and I have had several problems since, but she seemed to not believe me about my issues.  I think that's what's really bothered me...she almost seemed bored and like she thought that my issues were trival, because she told me about a patient (no name) who had come in before me with a very abnormal brain MRI and musch worse issues that she could call definite MS.  I was really put off by that.

Yes, my issues are not as bad as some and I'm thankful for that, but since I work intricately with my hands to do my job, it is a big problem to me.

I have not had a MRI done of my whole spine, but both neuros blew that question off when I asked saying that lesions below the cervical spine are very rare.  Well, since I only have a spinal lesion to begin with and I have had issues with numbness and tingling in my feet who's to say that there isn't anything there?  I also asked about evoked potentials testing and was told that they aren't really valid and useful tests that MRIs are better now.

I have no where to go for another opinion, but I'm just hoping that my regular neuro doesn't read her report and reverse his opinion to treat, because that's what I'm leaning toward.  Everything that I have read points toward treatment even for CIS in most cases.  My husband, however, is leaning toward waiting because he trusts doctors emphatically.  I work with them everyday, and I know that they are human and don't always make the best decisions for patient care.  He will go with whatever I decide, I just know that he's super worried about me starting meds.

I was just a bit appalled that the specialist kept saying "we have to give you a chance to fail the MRI before jumping on treatment".  Why do I need a chance to fail that might affect my lifelong abilities?  I asked that and she never addressed it.

*sigh*  I hope that everyone has a nice Christmas in spite of our doctor and medical issues!  We deserve one!

[StormyRenee]

Great but scary info......

Take Care , Theresa

[Quixotic1]

No, probably not.  It's a page from a subscription service I have.  I'll have to find another way to show you the info.  I'll work on it after Christmas.  I wrote out the important info, it's just a lot easier to understand when you see the graph.

:((

Quix

[mistylee]

Quix I have tried to copy and paste this link but it doesnt seem to be working?? Am I doing something wrong??

Mistylee

[Quixotic1]

Oh, yes, I have opinions!  This is going to be my next Health Page, but this is a goood place to begin the thought process.

IF you have had only the one "attack" this is a CIS.  From history you have evidence of damage in the nervous system in more than one place, but I don't know if you have "objective" evidence of this damage.  Has a neurologist documented neuro exam abnormalities anywhere?  What do you mean loss of some reflexes in your hands?

Okay, for the purposes of this answer I am going to say that it is likely that your neuro exam was abnormal in two or more spots, like diminished sensation, and altered or asymmetrical reflexes.

Now, your "specialist" was not giving you the whole picture when she said that you had a 40% chance of converting to definite MS with your picture.  There are lots of studies out there looking at what risk factors are involved in calculating the risk of converting from a CIS (Clinically Isolated Syndrome - meaning one attack of symptoms that are seen in MS along with different numbers of clinical lesions (abnormalities on exam and testing).

A lot of this data has been put together and it is pretty consistent.

First, there is the question of how many lesions are present on the baseline MRI.  Your brain has no lesions (right?).  However, you have one very definite spinal lesion.  (we will set aside the fact that spinal lesions are more indicative of MS because fewer diseases cause them).  We'll be conservative and just call this "one lesion at baseline."

So now we have:

1 clinical attack of symptoms
2 or more clinical findings on exam or testing
rule-outs have been done
1 MRI lesion at baseline (but it IS a spinal lesion)

The current data (putting all the major studies together) would place you in a category of "Moderate Risk" to convert to Definite MS.  There is a nice graph that puts all of this together and I am having trouble finding a way to point you all to it.  This is from a lecture given to doctors on Early Treatment Intervention to Delay Conversion to RRMS.

Please try to go to this link and do one of the following: Either listen to the podcast and look at the slides or Download it as a Printable Transcript and read along noting the slides and graphs.  The slide that you have to see and understand is the one with the vertical bar graphs that show how many lesions correlate with what kind of risk:

http://www.peerviewpress.com/selecting-immunomodulating-therapy-relapsing-remitting-multiple-sclerosis?person_id=2986724

Your situation (the group of 1 to 3 lesions) would correlate with Moderate risk and when you look at the graph you see the first bar corresponds to your risk within the first 7 years after the first attack.  The risk is shown as 40%.  BUT!  Please look carefully at the next bar which indicates your risk for the next 14 years.  Your risk of developing definite MS corresponds is 90%!!!

What I am saying is your shortterm risk for developing MS is 40%.  But your longerterm risk is just under 90%.  Ninety percent!!!  Why are these doctors, who say they are concerned with delaying or preventing conversion of CIS to definite MS not looking at the longer term risk???  Is it meaningless that in 14 years you have  a 9 out of 10 chance to have MS?  Why do we not want to begin delaying any progression now??

For the whole forum.  I think this is HUGE information!!  You know that I have been saying that with just 1 or 2 lesions, your chance of developing MS skyrockets to close to 90%.  The studies show this, but most doctors only look at the 7 year data not the 14 year or 20 year data.

At 14 or 20 years the end-result of converting from CIS to definite MS is NO different whether you have one lesion or more than 10 on the first, baseline MRI!!!!

I repeat:

At 14 or 20 years the end-result of converting to definite MS is NO different whether you have one lesion or more than 10 on the first, baseline MRI!!!!

Now, I am not finished.  In this lecture that I pointed you toward, Dr. Vollmer of the Denver MS Center also adds that if a person with CIS also has O-Bands in the CSF or a positive VEP their risk goes up, thugh he doesn't say by how much.  I have already mentioned that your one lesion being a spinal cord lesion also increases your risk.

So, I disagree - on the basis of the published literature - that your risk is as low as quoted by the "specialist."  I would maintain that your shortterm risk is greater than 50% and that your longer term risk is close to 90% that you will have full-blown MS within the next 14 years.

Your regular neuro is on the right track.  He is just not confident in making the call to treat.  The recommendations do allow for withholding treatment and watching, but the studies show that there is a risk of losing some of your window of opportunity to more effectively delay progression of the disease.

I think you might do the following.  When you see your doctor next time (if you feel this way) tell him that you would rather treat and take steps to slow possible MS than wait and be absolutely sure.

Also, I would recommend that you download and print the lecture and slides that I pointed you to.  You can always say that "a friend of the family who is a physician and who has MS (that would be me.  Your family likes me okay, don't they?) sent you this article that shows that your longer term risk is fr higher than the 40% quoted to you by the "specialist".  And this is further evidence in your mind that you should be on a DMD now.

The other thing that you might do is give your neuro a copy of my answer here - teliing him it is from an email to you from the doctor family friend (taking out the part about him not being confident, lol.)

I think this woman was holding back because your symptoms are all/mostly sensory pointing to a likely more benign course - giving her the luxury of waiting.

Does all of this make sense?  You - and everyone else - really need to look at this bar graph on the risk of converting according to the number of lesions someone with a CIS has.  It give a world of info and tells you why I am so adamant on this topic.

Ask any questions you need to.

Quix