I'm Extremely Upset

[jamilea]

The MS specialist came in after I handed every MRI and documents over to the resident Neurologist. He went and talked to the other guy and then they both came in.

The MS specialist says that it looks like MS to him, but that he wants me to get a lumbar puncture to confirm because my lesions aren't very large and typically, MS lesions are large. He spent a total of 15 minutes with us and then left.

I pulled out the McDonald criteria with the resident Neuro to try to go over it with him. He tried to tell me that under the 'Lesions' column, 'Objective clinical evidence of 2 or more lesions' means what is seen on a neurological exam and that he didn't find anything abnormal when he examined me aside from a difference in feeling on the right side of my face compared to the left.

I balked and told him that from the research I've done, it's not uncommon at all to not find anything on neurological exam as well as that Objective clinical evidence of 2 or more lesions means lesions in the brain or spinal cord, having nothing to do with a neurological exam. He went on to reiterate what he previously said. I found out that he will be performing the Lumbar puncture using anatomical points, not any guidance on a video screen.

Here is what I found out from the MS specialist:

-Of the 9 brain lesions; 1 lesion from 2010 is in the periventricular area and 1 new one is in the juxtacortical area.
-I have 1 spinal cord lesion that they've established wasn't there in 2010 though they also, in the same breath, said that it could've just been developing at the time because it's the only thing that could explain the left sided symptoms I have.

I'm worried that they want me to undergo an unnecessary procedure. I know I'm not a doctor, but the way I understand the revised McDonald criteria, I meet it for a definitive diagnosis. What should I do? I don't want a needle in my spine if I don't have to have one put there.

[palmtree]

You have the right to refuse any medical intervention, test, medication...if you don't want to do it, DON'T DO IT.

I went through the lumbar puncture. They also didn't use any fluoroscopy. It was horribly painful, they wouldn't let me stay in the recovery room until I felt better and I had a terrible headache for 3 days. To top it off, the LP didn't show "anything significant".

IMHO, this test is outdated and should no longer be used.

If you are worried that you have MS and will not get the opportunity to have disease modifying treatment, go to another neurologist that is not an MS specialist (if there is such a thing), tell them you are almost sure you have MS and you want to start treatment whether your diagnosis is definitive or not. Hopefully, they will respect your wishes.

To find a good neurologist, look at the reviews. I found the most useful one was vitals because the patients write their experiences, not just rating with stars.

I wish you the best of luck and don't be fazed by these medical professionals and all their "opinions". Find the ones who listen to you and listen to yourself. It's your body. You are in charge.

[AriD]

I agree. You can refuse any tests if you don't feel comfortable having them or don't feel they will help with your diagnosis. I, also, had a negative lp back in 1996 but definitely have been dealing with MS. Being negative put doubts in my initial diagnosis and delayed my treatment for quite a while.

If you don't feel good about how things are going, get a second opinion.

[jamilea]

Thank you for your responses. I just got back from the eye doctor. About two months ago, my vision was blurry.

My left eye went from -4.25 to -5.25. My right went from -4.75 to -5.25.

The lenses worked for awhile and I started noticing blurry vision again for the past week as well as my left eye feels swollen. The prescription changed to -4.75 in the left and -5.00 in the right.

She dialated my eyes and found the optic nerve raised in my left eye. The other eye doctor came in and confirmed what she saw. Then I did a peripheral vision test. There is some loss in 3 areas in my left eye so she wants me to see an Opthamologist.

I really really hope it goes back to normal. My eyes are the last straw. I'm gonna be aggressive and go to a MS center. I'll call Monday morning.

[palmtree]

I hope you don't have ON. But, to tell you my experience, I, too had 3 lesions without a definitive diagnosis. Two months later, my eye started hurting.

I went to the ER. The dr said, "it's probably dry eyes" and treated me like I shouldn't be at ER for such a trivial thing.

I said, i have just received a probable diagnosis of MS, can you please call my neurologist? He said, no. So I said, PLEASE call my neurologist.

He called my neuro. Didn't tell me what she said. But a tech came in, started an IV and started a high dose of Solumedrol. I was admitted to the hospital and had an MRI. My neuro came to see me in the hospital the next day, relieved that I had gone to ER, relieved that she had started the steroids and admitted me against the opinion of the ER doctor and said, "the MRI showed ON. You are going to stay in hospital for 5 days".

To make a long story short. It might be worth the trouble to go to ER. if you do have ON it's better not to wait until Monday. At the beginning of MS, the sooner ON flares are treated with high doses if IV Solumedrol, the better. And you just might get your dx without a lumbar puncture.

[jamilea]

The optometrist told me to go to ER if anything gets worse . . .

I just had a brain MRI at about the beginning of August. If it were ON, wouldn't they have seen it on that scan?

[jreagan70]

Hi jamilea:

Before you consider going to the ER for what could be another disappointing and expensive trip, there are some things for you to consider.

First, your MRI was almost 3 months ago. A snapshot taken 3 months ago may not apply now, and wouldn't apply at all to anything that developed after that.

Also, if I'm remembering correctly, you had an eye exam around the same time and the doctor didn't find anything to suggest overt ON. Assuming for sake of argument that you might have had ON at the time, if it was so subtle that the doctor didn't see any evidence, it's highly unlikely that it would have been picked up on an MRI. Sometimes even unmistakable cases of ON don't show up on an MRI.

Second, ON is not an emergency. As with other flares with MS, the ultimate outcome is the same whether it's treated with steroids or not treated at all. And, in MS, which is what's suspected, steroids have no influence over the progression or outcome of the disease. So ON is not an emergency that requires you to rush to the ER for steroids, since steroids aren't required at all.

The reason to go to the ER for a vision problem is because you don't know what the problem is. So the optometrist's recommendation to go to the ER if something gets worse is correct, but it covers vision loss for any reason, and isn't intended to imply any particular diagnosis or treatment.

Your experience at the ER for a vision problem could go several different ways, and not all of them may be satisfactory, especially if you have a set idea of what the problem is and what you expect to happen. It's likely that the ER doc won't have enough experience with unusual eye/vision issues to know what to do about them in the ER. Plus, you don't have a definite diagnosis of MS or ON, so your case is more complicated than for a person with an established diagnosis of MS who has had a previous episode of ON. So expect to be in the ER a long time.

Third -- and you may have trouble believing this part -- the change in your glasses prescription is not related to MS. The parts of the eye that contribute to general refractive error aren't part of the nervous system that's involved in ON or even MS in general. As long as vision can be corrected back to 20/20 -- with ANY lens power -- ON isn't a major suspect as the cause of the blurry vision. ON causes blurry vision that can't be corrected back to normal with lenses. So it's important here not to confuse things that are coincident in time with being cause and effect.

The change in your glasses prescription could indicate a different problem in the mix of what you're experiencing, but it isn't ON. The ophthalmologist will be able to look further into that. The defects in your visual field definitely could be the result of a mild case of ON, which could be a past episode and not current -- and the ophthalmologist will look into that as well.

**When the optometrist said she wants you to see an ophthalmologist, did she say when? And is she sending a referral to the ophthalmologist, or are you supposed to make your own appointment?**

Fourth, as I recommended before, you really should change neurologists and stop being stuck between a resident and a general neurologist. But Kaiser has few neurologists with more than general experience with MS, and it doesn't have MS centers. What are your plans for going to one?

[Jules A]

If you are worried that you have MS and will not get the opportunity to have disease modifying treatment, go to another neurologist that is not an MS specialist (if there is such a thing), tell them you are almost sure you have MS and you want to start treatment whether your diagnosis is definitive or not. Hopefully, they will respect your wishes.

Although I totally agree with a second opinion I would recommend going to another MS specialist and if any physician ever agrees to start a MS disease modifying treatment on a patient simply because they requested it I'd be highly suspicious of that physician's judgement. I also doubt insurance would pay the thousands of dollars these medications cost without an appropriate diagnosis.

It definitely sounds like something is amiss and although exhausting I would continue searching for answers but I'd continue going through the proper channels to secure a firm diagnosis and then consider treatment options. I hope you find answers soon.

[Temagami]

I had the lumbar puncture- mildly painful but no after effects and no camera to set it up.
The upside was finding out about the oligonal (sp?) bands. If you are going to end up paying lots of $ for the procedure, you can reconsider.

[twain]

I too had a LP. Other than a needle prick it wasn't painful and my neurologist (who is a MS specialist and very experienced) didn't use any cameras or other devices to monitor.
Afterward, he told me what I needed to do to avoid a headache, and I followed his directions and I was fine.
The LP confirmed my MS diagnosis (along with an MRI and a medical history,) and he immedidately started me on Avonex.
It's a weird disease. It takes several diagnostic tests to confirm it.
Information is power. Get as much info as you can.

[jreagan70]

If you are worried that you have MS and will not get the opportunity to have disease modifying treatment, go to another neurologist that is not an MS specialist (if there is such a thing), tell them you are almost sure you have MS and you want to start treatment whether your diagnosis is definitive or not. Hopefully, they will respect your wishes.

NO! Hopefully not. This suggests that 1) anyone who has convinced themselves for some reason that they have any condition should just go to a doctor and tell them they want treatment for their presumed condition and the doctor should just cave in and start treating them for a disease they may not even have, and 2) you should actually seek out a doctor who is stupid enough to do that so you can get whatever you want.

One of the tenets of medicine is that doctors don't treat a patient for a condition they haven't been diagnosed with. Unfortunately, there are some stupid doctors, and we usually hear about it after someone has died.

So, jamilea, don't do that. You already have a neurologist who reportedly has MS knowledge, who thinks you may have MS. Most immediately, the person to be talking to is HIM, not the resident and not the general neurologist the resident reports to. Talk to HIM about the lumbar puncture -- phone, email, or try to get an appointment with him. And ask HIM if he would be willing to diagnose you with clinically isolated syndrome and start you on an MS treatment med until he thinks there's enough evidence to diagnose you with MS.

You already have a bird in the hand here. You can use that to keep things rolling while you look for a different neurologist. And a knowledgeable and skilled one, not one you've picked because you're hoping they're stupid.

[me8k]

I was in the same boat

My doctor who was a ms specialist wouldn't diagnose me either for 4
Years without a lp. I flat out refused it. I never did get a second opinion and did stay with the same doctor and just kept have repeat mris. My mris stayed the same for the first 3 years until this past year it changed , I had new lesions, some enhancing. I was given a diagnosis of RRMS. I am now on tecifedra. I don't know looking back if I would recommend it , but that is my story

[Starla]

I'm so sorry you're going through all of this. I hope you get some answers soon and can move forward for the better.

[jamilea]

I typed this up last night but the site went down so I saved it lol

I didn't go to the ER. I know better from working as a CNA and from already dealing with weird symptoms for the past six years. The most I would do now is go to the Urgent Care for some things because I don't want to blame everything on whatever this is. I didn't feel the need to go anywhere this time though.

The eye problem does concern me the most. She couldn't correct them back to 20/20 I don't think because even with the change back down in prescription, I still cannot see clearly as I could before July. I'm not positive though. She emailed me her report to take to an Opth. She didn't give me a referral because she is through my VSP insurance. She just simply put it on her report that I need to see one. I'm going to upload that report to the online KP email thing to my primary care doctor to put in the order for referral. As soon as she does that, they will call me to schedule an appointment. The eye doctor did say it would be a good idea to repeat the peripheral vision test to ensure it isn't just a learning curve issue since I've never had that test before. Maybe it is all just a fluke. That's what I hope.

As far as the reported neurologist who has knowledge about MS. He is the mentor in the Neurology department who is a MS specialist. He is the one who said he wants the LP. He said that treatment will happen depending on the results of the LP. I didn't think of this until now . . . I could probably call Kaiser and ask to see him instead of the Resident. I like the Resident. I just don't want him doing the LP. It was the attending Neuro at my second appointment who wanted to start me on Extavia, but that didn't happen.

The specialist told me that the LP hurts more than a blood draw. That's when I asked him who would be performing the LP if I got one. He pointed at the Resident and said him. I got anxiety about it. I hope he wasn't offended.

They also told me that what I was experiencing in my face last week is Trigeminal Neuralgia. The MS specialist said that even if the LP confirms MS, I don't have a very big lesion load for the symptoms that I have (then he said, "But then again, I have patients who are in a wheelchair who feel mostly fine so everyone is different") so it may not be a good idea to be aggressive by taking the DMDs because of the side effects. I know that's a personal choice though so I'm gonna be the one who decides that when that time comes.

I just can't even believe that any of this is real. It's weird that I feel that way. It's just that I don't feel like I'm dying so it seems strange to me, especially since I've been feeling better recently. I've learned my lesson though. When I'm feeling better, now is the best time to be aggressive and pursue getting a diagnosis. I won't be blowing things off anymore due to denial although I really want to.

I am less upset tonight. I did a sewing project and that calmed me. I just bought a sewing machine a couple of months ago. I love sewing so much. I've made so many things with it so far.

Thanks everyone for taking the time to respond to me. I really appreciate it.

[jamilea]

I called the MS center at UCLA in my area earlier today and gave them all of my information after contacting the local NMSS chapter. A Neurologist from the center called me. I just got off of the phone with him. I told him everything and what the other Neurologist wanted to do, etc. He said that he feels my case meets the criteria for clinically definite MS and that a lumbar puncture is unnecessary. He wants me to come in and take part in one of their research studies and is going to email me the information.