Do I really have MS?

[Johooper]

If it were me I would ask the neuro to sit down and explain why he is dx MS, I asked mine how sure are you and he said 100% no LP needed. Are the lesions typical to MS etc etc. IMO It does sound like it. Before I was dx and it was very quick, I had no idea, not even crossed my mind. Pain in my arm was the symptom that led to mine being dx and at that time no further symptoms (or so I thought). Try to have a think about minor insignificant stuff that my happen, like foot going to sleep, weakness in limbs etc, it may not be all at the same time and easily brushed off. I had restless leg syndrome for years and years and only now realise that it was the MS all along. I get loss of sensation in my face, nose and many other areas where when you may not notice until you scratch it or rub it and you go 'thats weird it feels odd'.

Also I think you will find that if you take out ins now after all of this you will still not be covered as you had an idea. I also agree that trying one of the injectable s first is probably the best way to start.

I am Australian so I understand our health service and system and compared to some in the USA we are very lucky.

The eye tests she is sending you for are because of the drug (although its a good thing to get done as it can affect eyes). I have just been discussing the drug with my neuro and she said the same, the drug can cause some issues with your macula (i think it was there) so they like to get a base line and then check again in approx 3 months. Any changes and they stop the drug (i believe).

If it were me I would probably go with the less aggressive injections and ask for another MRI in 6 months to assess any changes and decide then. If you have no progression this time or much less than before the drugs are doing their job.

Jo

[Bob698]

You really need to learn what MS is and how its treated.
Its a very complex disease, both in terms of what's really happening and how it effects the rest of you.
It makes it much easier to weigh the risks of meds vs their benefit.

The LP stuff can be confusing. Basically its a test to determine if MS is present within your spine. It doesn't change prognosis or treatment, its just handy if your MRI data isn't conclusive.

From what you've written, it sounds like your Neuro is already convinced. Keep in mind that MS is diagnosed more by omission, they've ruled out X, Y, and Z therefore..

[Arthur Spooner]

Thanks Jo,

I will ask the neuro just how sure she is. Surely, if she had any doubt she would have referred me for a second opinion. I mean, isn't that the ethical thing to do. I have no reason not to respect her judgement, except that I do have these unanswered questions. Hopefully, she will want to reasure me of the accuracy of her dx. If she is reluctant to explain her dx, then I guess alarm bells will ring in my head. She did say the lesions were very typical of what she would expect with ms.

Over the years I have had heaps of 'minor insignificant things' like numb patches on my arms, but I am sure they could also be nothing, and things that most people get from time to time. I worry that I am becoming a bit of a hypacondriac over what might just be normal living. Being a typical guy, I have always managed to turn the sniffles into a flu, maybe even phnemonia, lol. That is why I hate it when the doctor is trying to get my history. I think I might give them info that is either sensationalized or unnecessary. For example I shared how I lost my sense of smell in 1992, and for three years everything in the world smelt like the most offensive smell. I am almost certain it was caused by spraying pesticides, so really should have said nothing to the neuro about it.

I am so tired. Since hearing the dx on Weds I have had only a few hours sleep each night. The heat doesn't help. My boss expects my pdr on her computer at the start of monday, yet my thinking is all over the place. Hopefully, I can manage a nap in the day and then work on it.

[Thinkimjob]

Hello, fellow brave Aussie.
I, alas, am not a neurologist, so bear in mind this is just my opinion.
Your neurologist sounds like she's on the A list. That doesn't mean she's infallible, but chances are extremely high that she's right.
I was diagnosed 14 years ago after one MRI.
Have an LP if you really, really want to, but they're not entirely definitive either.
I'd say another neurologist would tell you exactly what the first one did.
Gilenya sounds a bit too strong, too soon. I always wondered why they'd develop a drug for a physically disabling (potentially) disease that could wreck your eyesight.
Good luck, Arthur Spooner.
Diagnosis is just about the hardest thing to deal with.
Once that's over, it honestly gets easier.

[Arthur Spooner]

Thanks Thinkimjob and Bob698 for your thoughts. They are appreciated.

Rang my sister just before. She has two daughters with ms, both being dx over ten years ago. One of my nieces has been on gilenya for 5 months and has no complaints and the side effects have been minimal if not non existent.

My sister pretty much is on the same page as most people here. She thinks I should see if the neuro is able to satisfy me that her dx is correct, and if I still have a doubt then I should see another ms neuro for a second opinion. If I am satisfied with her dx I will then ask her to explain why she thinks gilenya is the appropriate drug for me.

Yep, that sounds like a plan

[kingrex]

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?....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.

I'm scratching my head here...in my experience, getting a second opinion before undergoing surgery or beginning an aggressive drug regimen has always been sound advice. Of course we'd all like to hear that the initial, dire diagnosis was in error - who wouldn't? But more than that, it's important to know with confidence that the initial diagnosis was accurate! I've read many MRI reports that were negative, and then reviewed the images and agreed with absolute confidence...only to subsequently learn that the patient had undergone surgery anyway!

Everything I've read says that a lumbar puncture is a valuable tool in making the difficult MS diagnosis. If I was being worked up for MS and a neurologist told me that the LP wasn't necessary, I'm sure I would seek another opinion to confirm the diagnosis before proceeding.

In short, I think using the term "doc shopping" here is off-base.


rex

[LindaT5761]

adding 2 cents: other steps to my dx

Welcome Arthur!

In addition to my brain MRI, they also ordered an EEG with VEP (Visually Evoked Potentials). This is to see if it shows a pattern typical of MS. (It did.) Also a lumbar MRI. I guess because that's another place where MS lesions sometimes show up. (i didn't have any.)

I too was totally freaked out by the idea of an LP. I really, really did not want to have one. Since I felt that way, they said it was not necessary, though they would have ordered it if I was willing.

It seemed the 3 tests I had plus my symptoms were enough to make the diagnosis fairly straightforward.

[LindaT5761]

about your symptoms

David,

(I missed the part about Arthur Spooner not being your real name! ;->)

Just googled "headaches symptom ms". Apparently the symptom of headaches leading to a brain mri leading to a dx of ms is not so unusual. Especially if the dr. is an ms specialist. I think talking with her about the dx, & asking why she is sure, is a good idea. Including the possibility that you haven't had symptoms YET. Maybe she wants to treat it now, so you never will.

Good luck!

[Arthur Spooner]

Thanks Kingrex and Linda,

Linda,I am still coming to terms with all the medical jargon, but by lumber mri, you meant an mri on the neck, then, I had one of those. That was my first mri which showed a 11mm lesion (half an inch). That is what initially inspired the brain mri's.

I did have a vep years ago, which, if I remember correctly, they claimed fit the reaction times and responses of someone with ms.

I am not sure if this neuro is ordering a vep test or not, but I think if she hasn't, I will make sure I demand one.

My sister says that only one of her daughters had the lumber puncture. I have a funny feeling it was done long after the diagnosis had taken place. I think it was done for other reasons.

Kingrex, forgive my ignorance, but when you talk about mri reports being negative, do you mean they were bad, as in the patient had ms, or do you mean they did not show any signs of ms? There is no doubt that my mri's do indicate more lesions each year, with some growing. I accept that it is a strong indicator of ms. As I said earlier I am a real coward when it comes to the lumber puncture. The second opinion and probably another vep sounds so much more pleasant.

btw, Linda, I chose the name Arthur Spooner as he always makes me laugh in King of Queens. I reckon Jerry Stiller has got to be one of NYCs greatest living treasures.

[kingrex]

Kingrex, forgive my ignorance, but when you talk about mri reports being negative, do you mean they were bad, as in the patient had ms, or do you mean they did not show any signs of ms?

Negative is GOOD, positive is BAD.


rex

[Johooper]

Lumbar is the lower part of the spine, cervical is the high part and bugger me I cant remember the name of the middle bit, thoracic I think lol (MS brain). I had a large 24mm lesion in the C1-C2 region (neck) and several others on down. Have you had full spine MRI, if you are still doubtful you could ask the Neuro to order one for you. I get your Aussie Male 'I'll be right mate' attitude lol.

At least you have knowledgeable family to understand, that can be half the battle.

Jo

[Arthur Spooner]

Hi Jo,

I can't believe that I forgot that lumber means lower back! The amount of times lately that I have forgotten obvious things does worry me. But then again, as I said earlier, I havn't slept well for a long time. I have had so many ct and mri's there because of my herniated disks it should be like telling me where my legs are. The neck lesion I referred to was in the T1 position.

I am lucky to have family that understand. I look forward to catching up with them at Christmas and seeing what info and suggestions they can offer.

Thanks Rex for clearing that up. Yep,my mri reports were always positive, in as far as they were the obvious indicators leaning towards ms.

I just wish these ms neuro's learned a thing or two from the cops and got their diagnosis from making me blow into a tube! Life would be so much easier.

[0485c10]

I'm scratching my head here...in my experience, getting a second opinion before undergoing surgery or beginning an aggressive drug regimen has always been sound advice.

Everything I've read says that a lumbar puncture is a valuable tool in making the difficult MS diagnosis.

In short, I think using the term "doc shopping" here is off-base.

In short i think in is the responsibility of the patient to ask the doc about options in diagnosis & treatment not just write a doc's diagnosis off and get a new one like putting on a new pair of gloves.
I think that makes me a part of a new breed of patient as informed, savy and a partner in their health care no sitting docile waiting to be told what to do. The wasy of the future.
In short i think a patient has to know exactly why a test is ordered, what additional information it will provide that
wasn't available otherwise.
In short I am wondering if the promotion of the wizzard of oz pulling levers behind the curtain is a scenario the medical community is more comfortable with? I'm scratching my head about it & don't think it will last much into the future.

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.

[0485c10]

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 wish i could just pass on everything i have learned about MS so you had all the information in your mind when making your decision. its like a frustrating fence that i can't do that.

MS progression goes like this...
Asymptomatic->RRMS->Worsening RRMS->SPMS

there is an earlier stage asymptomatic when the person is having MS episodes but doesn't know it yet.. I will put a link to an interesting chart that shows that progression on my homepage. its a site that is maintained out of you country i believe and shows a pragmatic communication style. Might be a country personality trait?

Treatment decisions are very individual. Your doc might be choosing a more aggressive treatment plan because MS damage on top of your current health issues with your back would be less easy to tolerate? So she is going aggressive for that reason?

Of all the stages of MS RR is the one that is currently treatable. And treatment options range from mild to aggressive. And gilenya may or may not be more aggressive, it just doesn't have a long track record.

I hope you have a printer so you can print out the articles and read them more comfortably then sitting in front of a PC.

[0485c10]

If I was being worked up for MS and a neurologist told me that the LP wasn't necessary, I'm sure I would seek another opinion to confirm the diagnosis before proceeding.

You date yourself. And show an area of having less information.