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**Sequoia** · 12-17-2011, 06:09 AM

Welcome to MSWorld, David!

I have two words for you: Second Opinion.

It's possible that you do have MS, but based on what you've told us it's at least equally possible that you don't. Gilenya is dangerous enough that some neurologists won't prescribe it for their patients, and others won't prescribe it unless the earlier, less-toxic disease modifying drugs (DMDs) have failed to work.

We have a sub-forum here dedicated to Gilenya where you can find more information and personal accounts:

http://www.msworld.org/forum/forumdisplay.php?f=93

Have you had a lumbar puncture that was positive for MS? Have all the common mimic diseases been ruled out by bloodwork? I'm guessing you would have said so if the answer was "yes."

As I said, getting a second opinion, preferably from a neurologist who specializes in MS, would seem to be warranted in your case. I'm not a medical professional, but it's what I'd recommend to my own family and friends in a similar situation.

Best wishes to you,

Sequoia

**Arthur Spooner** · 12-17-2011, 07:41 AM

Thanks Sequoia,

I did ask if a lumber puncture was appropriate and she told me it was not necessary. When I went there on Weds I did get various blood tests, an ecg and a chest X-ray. I have not heard the term 'bloodwork' before, but assume you mean blood tests may at least eliminate diseases that mimic MS.

Thank you for the link to Gilenya. I wlll read up more about it in the morning, as I am in Melbourne Australia and it is pretty late.

The lady I saw is a neurologist that specializes in MS, infact leading the clinic at a respected major hospital. Could I ask for a second opinion at the same hospital by another neurologist. That would be easiest as they have all my records, mri's etc.

Up until seeing this lady, I saw a professor of neurology at teh same hospital, that had always told me(at least up until 2 mri's ago) that there had not been enough evidence to diagnose me with ms.

One thing that sticks in my mind about when I saw this doctor on Wednesday is she did tell me that the way MS is diagnosed was altered on the 1st of Jan this year. She said that if the criteria required to diagnose ms now, was used back in 2007 on me, I would have been diagnosed then as the mri's then would have been enough to confirm ms. Could that be right? is an MRI or two enough to confirm a diagnosis?

You gave good advice Sequoia and I will get a second opinion. In the mean time, I would love to know if anyone knows of someone that was incorrectly diagnosed with MS?

i should also mention I have two nieces with MS, even though that could just be a big coincidence.

**KatieDidNOT** · 12-17-2011, 07:46 AM

Hi Arthur--

Yes..you could have MS. The herniated discs (I have one too) and the MS are totally separate issues.

The herniated discs do not causes lesions. Something is going on if you have lesions, they are growing and more are developing. This is not normal and something is going on. This could very well be the basis of the diagnosis, if they ruled all else out. You might show few if any symptoms if the lesions formed in an insignificant part of the brain. I still have the same number of lesions I had 10 years ago, but two grew and cause me some grief to say the least. So MS is a silent disease...especially at first.

I hate MS. I hate it with every fiber of my existence, but I have recently told people if they have the disease, don't do something you would regret 10-years down the road based on pure emotion (such as not going/or going on a DMD). If you go the DMD route, explore your options...there are several out there and not all work for everyone. I am personally really excited with the MS research for 2011 and can't wait to see what happens in the next two years with DMDs.

However, with all that said, MS diagnosis as with any chronic illness should always be backed up with a second opinion. Your doctor should have no problem with issuing a referral for a second opinion. And you need it for your own piece of mind.

Katie

**Sequoia** · 12-17-2011, 08:51 AM

"Bloodwork" is a term commonly used in the U.S. to mean blood tests.

As for where to get a second opinion, personally I wouldn't go to another neurologist in the same practice. These doctors confer with each other, and are likely to have the same diagnostic standards. Completely fresh, unbiased eyes would give you a better basis for comparison, I would think. Copies of your records can easily be forwarded to any other neurologist.

And yes, I do know of several people who have been misdiagnosed with MS, sometimes being rediagnosed after several years, sometimes sooner. Since there's no conclusive test for MS, it's not surprising that misdiagnoses happen.

On the other hand, there's no harm done and much to be gained by starting on a disease modifying drug even if you do later turn out not to have MS...at least not if you choose Copaxone or one of the interferon medications. Gilenya is more of a judgement call, as is Tysabri.

**gomer** · 12-17-2011, 09:08 AM

It can also work the other way........

For decades my doctors blamed my neuro issues on my diabetes and did not look further, even when I told theme something ELSE must be wrong. They even sent me to shrinks who decided I was not nuts or even depressed, just "adamant" about whatever it was did not show up on their testing.

It was DECADES later before any proper testing was done, and even then dismissed as a CNS issue to be investigated "if warranted". Two falls w/surgeries etc and still nothing despite Dawsons finger galore on MRIs. It was a new eye doc I went to for diplopia prism update (I had 45 yrs) that opened the MS can-o-worms. I was directed to seek a neuro and eventually full workup, MRIs, EVP, LPs etc.

....

...

..

.

.Gomer

**0485c10** · 12-17-2011, 10:24 AM

What you have going on i think is RIS Radiological Isolated Syndrom(when an MRI is done for reasons other than suspected MS- headaches is a common cause for an mri for reasons other than suspected MS- and MS like lesions are found)google it-i just did myself in one i admit not credible source it said 30% will convert to MS(but i wasn't researching this in depth like you will) that means that 70% won't.

--you will be able to find neuro's to tell you it is strongly indicative of possible MS but not yet MS and you will be able to find other neuros Mostly MS specialist who define and treat it as MS. Both will be right its a grey area.

YOU are on your own in what you want to do you--don't confuse the issue or shift the responsibility. Its your responsibility! I don't have much confidence in 2nd opinions in this case--thats just shopping until you get a 2nd opinion that you want to hear. Whats a 2nd opinion worth in that case?

I STRONGLY agree with Sequoia--I can't emphasize that enough!!! Gilenya is a new drug only out for a year-with side affects unknown. There was recently the first & hopefully only fatality after taking Gilenya that is being investigated to determine if it was from G or not--why start as drug you may not need until they determine if its a killer? How stupid does she think you are? And gilenya has been shown to negatively affect vision so you may start a med you don't need with vision intact only to have an issue with vision later because of a med you didn't need......this smacks of a violation of the hipocratic oath "first do no harm" The self injectible meds although not desirable to do, have a clear long range saftey record.

I have begun to post hyperlinks to articles i think helpful on my home page. later this evening check there under todays date, they are articles i think you might find helpful.Thanks.

I'm just not certain how much up to speed you need to get on MS diagnosis to understand the articles?

the process of diagnosis in MS--
CIS(clinically isolated episode(cis) strongly suggesting MS, but might not be a cis)-> Possible MS(means the CIS is looking like its actually a MS CIS)->Probable MS(means more than just the cis episode gives additional support to MS and ms is even more likely but its not ms yet)-> Definite MS(its MS at this stage)

its controversial whether to begin treating in the probable stage or wait for it to become definite--go doc shopping to find what you want to hear.

Just last year(?) they defined an RIS as a CIS which opened the floodgates to treat asymptomatic people with MRI indicative of MS--touchy subject because what differentiates "treating the patient" or "treating the mri"? Whats the goal?

Just last year(?) there was a push back by the MCDonald Diagnosing Committee that an MRI had to be done for suspected MS for it to be a CIS and allowable as a diagnosing criteria...

In your "grey situation" the first mri was not done for suspected MS. So it could not be a CIS. But the second one was and fullfilled the McDonald diagnosing Criteria for a CIS. then increasing lesions after that second mri fully fullfilled the Mcdonald diagnosing Criteria for MS. But asymptotic MS is controversial.

Then again there is the possibility you were symptomatic and just didn't realize it..

**0485c10** · 12-17-2011, 10:56 AM

You know instead of doc shopping for a 2nd opinion, where you already know they can be different but both right because this is a "grey" area why don't you try asking this doc to give you a choice and outline what her "aggressive" treatment plan, her "middle of the road" (moderate) treatment plan would be and mild treatment plan would be.

Then ask her to give you benefits and risk of each treatment plan.

and read those links i asked you to check on my home page. Please! (it might be a full day 'till i get them done)

My guess:
Aggressive: Gilenya
Moderate: self injectible drug(rebif or betaseron)
Mild: scheduled routine MRI's until symptomatic CIS(relapse)

**0485c10** · 12-17-2011, 11:09 AM

Originally posted by Arthur Spooner View Post

- Are diagnosis's of MS ever wrong?

No. diagnosis of "MS" is never wrong. a diagnosis of Definite MS could be wrong but its mostly called Probable or Possible MS until certain. Probable or Possible MS can't be wrong. it doesn't mean ms is gonna happen, doesn't mean its not gonna happen either its just more likely to happen.

**jenphilly** · 12-17-2011, 11:18 AM

I agree with everyone telling you to get a second opinion! There are so many diseases that MS can mimic and ones that mimic MS... I am very recently diagnosed myself and my adventure has been fairly short term, only took about 6 months to diagnose! The doctors I've dealt with are the opposite of what you've experienced, typically doctors want one more test or check one more thing before they are willing to sign on the dotted line for an MS diagnosis.

Lesions in the brain can be caused by lots of things... migraine, lyme, even if you play sports and have hit your head, that will also cause lesions. I would tell your doctor you want a spinal tap, not ask for one. Don't be afraid to stand up and challenge any doctor, regardless of who they think they are or what reputation they have.

I also am really surprised that they are suggesting Gilenya as a first med. That was actually something I wanted until finding out all the details that Novartis won't publish and the personal experience of neurologists. I liked the ease of taking the med, but when faced with the reality of side effects and the negative reaction that is starting to be reported, I think the drug will see regulations levied for restricted use by the FDA.

Definitely find another neurologist for a second opinion.... keep us updated with how things are going.

Good luck and I'll hope for a second opinion of not MS!!

Jen

**AnneLouise** · 12-17-2011, 12:26 PM

Personally, I'd want a spinal tap. It will tell more than just the MRIs alone. I take it that was all she did, as well as the blood work. The blood tests will rule other things out, but things like a spinal tap or a VER can really tell you what's going on.

And I agree with everyone else here. Get a second opinion!!

**0485c10** · 12-17-2011, 01:57 PM

There is also a 2nd oral med that is suppose to be comming out this year with a better safety profile in trials. BG-12. Ask your doc about that & if it would be better going with a mild or moderate treatment path until this 2nd oral option is available--at least in asking the question you let her know your up to speed on these issues.

**0485c10** · 12-17-2011, 02:36 PM

You know at 11 am i decided to go to the hospital with what appeared to be a stroke. it took 30 minutes for my family to drive me to the hospital. They admitted me with POSSIBLE MS or stroke. They ran an mri and there was conclusive evidence that it wasn't a stroke but MS at 2pm i bypassed the Probable MS stage and became DEFINITE MS.

at 7 am i meet with my future neuro & as he was trained to do he did not accept another doc's diagnosis but evaluated me himself. I became PROBABLE MS with him. He told me an LP was not need because the MRI was clear for MS from what had been reported to him. and he would look at the films that day. The next day he changed my status to DEFINITE MS again.

S...o..o...o i immediately had Possible MS.
it took 2.5 hours to upgrade me to Definite MS
it took 17 hours to downgrade me to Probable MS
and about 8 more hours to upgrade back to Definite MS and here i remain for the last 7 years. All is consistent with my diagnosis. Really it takes some time to observe the disease to know for sure what it is.

for me: Possible->Definite->Probable -> Definite.
It was MS from the get go.

In my home page i posted a link to a good article on Diagnosing MS. LP are needed when there is uncertainty in the diagnosis. Which i didn't have, but that's not always the case..as the article diagnosing ms describes a LP is needed when the Physician has uncertainty in the diagnosis.

Something to remember in medicine that i found helpful when a person told me....Nothing in MEDICINE is certain. The only thing 100% certain in medicine is death after that its just what it is most likely(probable) to be.

Some times its easy to think diagnosis are like an on-off light switch.

**chalknpens** · 12-17-2011, 03:27 PM

I was diagnosed five years ago, following years of migraine events ... not always pain, but always a visual aura.

I began injections right away as the doctor advised. I continued to question the diagnosis.

I finally wrote a book about the experience; it's on Amazon, titled Multiple Sclerosis, an Enigma. Because that's what i was, the doctor's enigma. My brain is awash in lesions, but i don't have relapses or remissions of the symptoms I do have.

The headaches went away when I decided (immediately on diagnosis) to change my menu to a healthier one. Lost weight, lowered blood pressure naturally. Headaches gone.

I've stopped the injections, and feel much better. Is it "all in my head?" Well, yeah. Definitely.

**Arthur Spooner** · 12-17-2011, 04:15 PM

Wow, You guys are so awesome! I can't believe the effort so many people that don't even know me have gone to, to make sure I get the best treatment.

0485c10, I will look up them hyperlinks on the pc. Normally I just use an ipad (which didn't recognize the hyperlinks) because I have trouble sitting [damaged back, not ms related).

One thing I did omit in my post (it completely slipped my mind) is I did tell the ms doctor that I have had bowel problems all year and also have frequent urination at night. I told her that I recently had a colonoscopy that amongst other things showed I had a benign enlarged prostate, which explains my bladder. As far as the bowel problems, she is referring me to a specialist. I am not sure if she read anything into all this regarding ms.

Before I get a second opinion, should I at least ask her straight out, what is the basis for your diagnosis? Perhaps she will tell me something that will satisfy me. I do know when she was telling me about the various lesions, I responded with a silly remark like 'all these latin words are just greek to me'. She said something like, don't worry, you don't need to understand them, but I do. Maybe, it was when she was attempting to describe these lesions, I could have got the explanation as to why it is MS. I think I was slightly in shock and denial at the time, and I perhaps didn't grasp all that was being said.

I am scared to get a spinal tap. There, I said it. The idea just freaks me out. Besides, I have heard how you have to roll up like a ball, and that is impossible for me. I have trouble putting my socks on, let alone be this flexible.

The doctor did tell me about the death that occurred earlier in the week with gilenya. She said that if it turns out there is a connection then she would not be putting me on it.

I am not supposed to be starting the medication until the new year, and to be fair to her, she is going to get me to have specific eye tests done first. Perhaps these tests will give more evidence either way as to wether I have ms or not.

If I get a second opinion and the next doctor says that ms is just one of many possibilities, would that open the door for me to get disability insurance. In australia you cannot get disability insurance once you have been formally diagnosed. Raising two kids alone with a mortgage will be tricky if it ever means I could not work.

Everyone here seems to be saying that gilenya is one of the more serious ms drugs, yet I thought it was for relapsing remitting ms, which I also thought was the mildest, and earliest form of ms.

I do remember when I used to see the professor he told me that he has done brain autopsies of people that died of cancer in their 80's. When he examined their brain, it was riddled with lesions, yet the deceased had never complained of ms symptoms. He told me 4 years ago that it might one day turn into ms, but back then, it was just a possible indicator.

My first mri in 2007 was done in the neck, which showed a large lesion. That is when they started to do mri's on my brain that showed more lesions. Each year new mri's would show more lesions and old lesions would often be larger.

I want to trust this neurologist I saw on wednesday. I need to believe in the doctor that I am putting my future in.

Again, you guys have been so kind with your responses. There is so much to digest, and I will read and reread them.

Thank you!

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