Just diagnosed.... I think.

[lesliev523]

Hi everyone,

I am so confused I really don't know what to do... I would love some other perspective on my situation.

I have had different symptoms for several years. My primary has wanted me to get an MRI but I have avoided it because it is expensive and my insurance isn't great.

On Tuesday, at work, I suddenly lost vision in half my right eye, it didn't go black. It was blurred or smudged. That lasted 1.5 hours, the vision came back but it is still slighly blurry. And now I have an ache behind my eye.

My eye still didn't feel right Wednesday, so I went to my primary. She did a strength test, and I was noticably weaker on my right. I had a CAT scan Wednesday night. That came up fine (no contrast).

She sent me to a retinal specialist yesterday morning. She thought it could be a retinal tear. He diagnosed me with optic neuritis, and wanted me to get an MRI because he suspected MS. My primary suspected MS as well.

My primary sent me to ER yesterday to get an MRI done immediately. My MRI showed two small lesions.

The neurologist came in and dismissed the optic neuritis diagnosis, and said the lesions were from migraines. I have not had a migraine in almost 20 years. She also rolled her eyes when I talked about past symptoms. She made me do some tests, but I don't know if I passed or not. She just said it was an occular migraine. She also said to see her in 4 months. No further treatment.

Well, today I went to my primary. She asked if I started on the steroid IV treatment. I had no clue what she meant. So then we went back and forth and she just said, I hate to tell you but this is MS.

So now I don't know what to believe. A *****y neurologist, or my primary who has listened to my symptoms for four years and tried to get me tested because she had a feeling. My primary is figuring out who to go to for a second opinion. And she really does not want to delay treatment.

I really don't know what to think?? Has anyone had anything similar?

[SNOOPY]

Hi lesliev523 and welcome to MSWorld.

No, you have not been diagnosed with MS...yet.

Even though your PCP may suspect MS there is much more testing required to rule in/out MS and this is done by a Neurologist.

My primary is figuring out who to go to for a second opinion.

A second opinion is a very good idea. In the mean time you may want to go to the hospital were the MRI was done and ask for a copy of the MRI and MRI report. Those are yours to keep and you will be able to take them with you to an appointment with a different neuro.

Well, today I went to my primary. She asked if I started on the steroid IV treatment.

IV steroids are used in the treatment of Optic Neuritis (ON). It is possible for ON to resolve without the use of steroids and it sounds like your vision is improving.

[MSer102]

I can appreciate why you are confused! I hate to say this but it sounds like both your primary doctor and the retinal specialist have given you incorrect information! I'm not surprised that a primary could be wrong but I'm kind of stunned that a retinal specialist could be so wrong. I'm so sorry!

I'm not a doctor but I've been through the same kind of situation myself many times and I have a great neuro-ophthalmologist who has taught me so much.

Optic neuritis does NOT come on suddenly and doesn't clear up suddenly and it doesn't affect just a perfect half of vision. That is classic for what's called an ocular migraine - sometimes called an ophthalmic migraine. You can google both optic neuritis and ocular migraine and see that they are both very different. I've had both of them myself and I can tell you from experience that they are very different and there's little way for the 2 of them to be confused by anybody who knows what the differences are.

What you described is a classic ocular migraine. The neurologist apparently recognized that right away. Again, I'm really surprised that the retinal specialist didn't. There is no treatment needed for an ocular migraine, so the neurologist was correct. Your primary was incorrect because she mistakenly thought you had optic neuritis which you apparently didn't.

As far as your MRI goes, there are many things that can cause brain lesions. Lesions caused by MS tend to look a particular way and are located in particular places. Migraines can also cause lesions but they don't generally look like MS lesions. It sounds like the neurologist looked at the MRI or at least read the radiology report and felt that the lesions don't look like MS lesions.

So it's important to know that just having some kind of lesion does NOT necessarily mean MS. And that's where I'm a bit confused too about why your primary doctor said you have MS. There are diagnostic criteria for MS and you haven't said anything that shows that you meet the diagnostic criteria. It sounds like your primary doctor has good intentions but has jumped the gun on telling you that you have MS.

She would have to be quite experienced in looking at the MRI's of people with MS to be able to tell you that your MRI indicates MS. It doesn't sound like she is . And there are no symptoms that are unique to MS so MS can't be diagnosed by symptoms alone. So even though your primary doctor has been listing to your symptoms for a long time, even she can't tell what condition you have just by your symptoms.

There is a sometimes long process of testing to rule out the other conditions that can cause the same symptoms you have had and it doesn't sound like all of that was done in one trip to the ER. So without all of that, that's another reason why your primary doctor might have jumped the gun in saying that you have MS. You didn't tell us what other conditions you have been tested for that have been ruled out.

Here's a link to the article that describes the latest version of the criteria used to diagnose MS. http://onlinelibrary.wiley.com/doi/1...ana.22366/full

So in the "heat of the moment" which had to have been very emotional and confusing based on the other wrong information you got from your other doctors, you might not have liked what the neurologist had to say and might not have liked her personality. But the neurologist apparently didn't see or hear anything that indicates that points to a diagnosis of MS. That's why the 4 month follow up and no treatment.

It sounds like you absolutely will benefit from getting another opinion! Another neurologist can give you an opinion in a much calmer atmosphere where more information can be looked at.

And by the way, even if your MRI suggested that you might have MS, MS isn't an emergency. There is no hurry to get on treatment. The treatments are sometimes more unpleasant than MS is itself and a lot of people with MS intentionally choose not to take them. I wonder if your primary knows or understands about that?

At least in the US, any physician can diagnose any disease because they have a degree and a license to practice medicine. The question is whether they have the necessary education and experience to do it for a particular condition and whether they have followed the proper procedures. And it really doesn't sound like your primary doctor has the experience to diagnose MS. So it's really better if you have a neurologist evaluate you.

Now sometimes even the specialists don't agree. But it really does take a neurologist to have the kind of training and experience to rule in or rule out MS.

And I have to say that I really don't understand why your primary doctor is having so much trouble getting you referred to a neurologist and why she couldn't do it before.

So it sounds like we are both confused, just for different reasons.

It sounds like you are confused because a doctor you like and trust has given you wrong information, compounded by a retinal specialist who also gave you wrong information, which was contradicted by a neurologist who apparently recognized that what you were told was wrong but it wasn't what you were expecting to hear and it was delivered under very stressful conditions.

And I'm confused because I can't figure out how doctors who should know better have given you wrong information! And why you didn't get referred to a neurologist before.

I'm so sorry this has happened to you. There are many of us with MS who have hit roadblocks and been sent on detours along the way to a diagnosis. But your story is unusual in that you got a double dose of wrong information packed into a short time with your doctors acting like it was an emergency when it wasn't.

So it's OK to take a deep breath and relax. There's no emergency. So try to forgive your primary doctor for jumping the gun and wait for your neurology work up. Worrying won't help or change anything. So my best advice is to carry on as usual and enjoy your life in the meantime.

[lesliev523]

Thank you...

I think my doc is thinking this way because I have had intermittent numbness in my hands and feet. I have also had issues with fine motor skills. And I have had balance issues. I have always thought these things unrelated and they improved greatly after I was diagnosed with celiac disease.

But lately they have come back... Then this eye thing happened. I am not convinced its a migraines because my eye still feels sore. And I have reduced clarity in that eye and slightly less color brightness. It isn't horrible but its annoying.

I hope i will get answers from the neurologist soon.

Thanks!,

Leslie

[MandyLynn003]

I can Relate

Hi lesliev523,
I know how you feel. In 2008 I had my first ON attack, my Neuro did an MRI and LP. the MRI was clear, but the LP showed "activity" elevated IGG and high white blood cell count, no O-Bands. He diagnosed me with RRMS and I started Copaxone. Did the 5 day IV steroid treatment and vision cleared up.

2009, second ON attack. 5 day IV steroids again. Vision cleared up. I was skeptical about the MS diagnosis because of the recurrent ON and clear MRI so I stopped the Copaxone.

April 2013, third ON attack, 5 day IV steroids vision still blurry. Saw a new Neuro, ordered another MRI which came back clear. He said No MS had no idea what was wrong as if I’m making up my ON flares and shut my case.

6 months later brings us to this month. I was refered to a new Neuro by my ophthalmologist, he suspects MS so here we go again more tests. I’m having an MRI done of my spine next month.

You should see another Neuro if possible, it's better to get different opinions when being diagnosed with anything.
This is life in Limbo. I hope you get answers soon.

[lesliev523]

Well I am happy to say that I got in with a new neuro next week!

What I am not happy about is that I was effected my my company restructuring, and I was laid off. I have insurance through Nov 30, so I am getting as much done now... wish me luck

[MSer102]

Sorry about the layoff. Since you were laid off you should have been offered a COBRA policy. Even though it's expensive it might be a good idea to buy it because it looks like the ACA might not be settled for awhile.

At this point it's not a good idea for you to be without health insurance for even one month. The ACA says you'll have to buy insurance next year anyway. Even if you buy the cheapest policy you'll still have to pay up to thousands of dollars out of pocket for your special testing anyway. So in comparison COBRA might not be much more expensive and you'll already know what's covered. You can always drop the COBRA policy next year if you find that one of the ACA plans works better for you.

Good luck!

[Justsayyes]

I'm a little Avonex hung over, but I have had similar symptoms and difficulties with my initial diagnosis.
My first episode was numbness down my sciatic nerve into my foot, I was treated with prednisone by my sports doc, and had physical therapy for a few months.

While that was going on, woke up with blurred vision in one eye, went to an opthamologist, but it wasn't very clear what was going on. I passed all visual field tests, CT scan normal. He yelled at me that I wasn't "trying hard enough" when he couldn't correct my vision loss. He started treating me for dry eye. I took doxycycline for 3 months, did warm eye compresses every day (which made my vision blur even more).

Back at the sports doc, I complained that I still had numbness, and he referred me to a clinic for headache and pain. I saw a neurologist who sent me for a visual evoked potential test which was abnormal. Brain MRI showed lesions that could be caused by migraine, so this was not conclusive for MS.

Lastly we did a lumbar puncture that clinched a MS diagnosis. The neurologist told me he really did not think I had MS initially, but the test just kept leading in that direction.

In retrospect one may say I had classic symptoms, and yet it took 9 months for a diagnosis. You have gotten some good advise here. I only want to add that your situation is unique. Not every condition presents as clearly as we would like. Sometimes it is a puzzle that has to be put together. Best of luck to you!

[lesliev523]

Thanks for all of the replies... I had my neuro appt yesterday.

She definitely thinks it is MS. But she wants to do a few more tests before we call it a diagnosis. Since I haven't had a blood test in over a year, we are doing one and ruling out Lyme. She is also calling for a spinal MRI.

I am hoping to get these done ASAP and know for sure.

She did confirm the optic neuritis, she said it was pretty clear to see. She was irritated that the neurologist in my area wouldn't consider the optic neuritis because I could have been treated. But she said that since its over two weeks since onset, that it wasn't worth doing the IV steroids.

So I guess I need to wait a little longer