Friday, May 29, 2009 KJ asks

Q: How Did They Diagnose MS Before MRI's?

I am in limbo. Today my GP told me that I'm right to be concerned that I have MS. He says I have several symptoms as well as white matter lesions, and my neurologist is trying to eliminate MS as a cause. Unfortunately most of my symptoms are vision related (double vision, lack of clear vision in the center of my field of view, colors look different between the two eyes, flashes of light, large black spot on one side, etc.) Since I was just diagnosed with a tumor in my eye (probably benign "orbital tumor" not that close to the optic nerve), the docs don't want to consider any vision symptoms until this thing is either removed or biopsied in place and found to not be a problem. Other symptoms I have are cognitive issues (Dude, where's my car?), intention tremor (sometimes bad), ticks and twitches, odd sensations (feels like drops of ice water on my back, stomach, and sides), GERD, and bladder and other issues "down there".

Getting back to my original question. I've read that MS used to be diagnosed by putting a patient in a hot bath and checking the symptoms/effects. When I have a hot bath I have a temporary but significant worsening of any of the above symptoms. I also have fatigue so bad I can barely get out of the tub at times. Would this have been enough for a diagnosis 30 or 40 years ago?

I see the eye surgeon July 13th and will try to schedule a spinal tap before then. I guess I'll be in limbo for awhile longer. Thanks for listening.

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Answers (2)

Vicki, Health Guide

5/30/09 7:27am

Hi KJ,

Sorry to hear your frustration. Before MRIs, there was a long process. Generally, the Schumacher criteria were used before the McDonald criteria that are used today.

A typical diagnosis process includes these things --

Case history over time
Family history
Symptom description
Neuro exam - reflexes, sense, muscle strength, eyesight, balance, -- looking for ataxia, clumsiness, spinal cord or neck lesions
Optic neuritis
Motor neurons
Lesions in hand and foot, tested by checking involuntary movement following pressure at pressure point
Evoked potential tests
Spinal tap
At least two definite attacks

Even today, the MRI is not enough. Sometimes lesions do not show up in a brain MRI, so a spine MRI is needed. Even so, multiple attacks are needed. The temperature test is an important sign, but it does not mean definite MS without other signs.

So sorry to say this, but it will take time. Good luck and patience.

5/30/09 9:59am

Thanks Vicki,

This is very helpful. Thanks for listening. I'm just getting a little frustrated with all this. I don't want this MS thing but I want to feel better. I don't care what they call it, but I'm tired of all the tests and doctor visits that don't result in anything helpful. I know they mean well, but at the end of the day what do I have? Shakes so bad I can't hold a cup of tea, fireworks in my vision, having to run to the next restroom, and (just after I thought my mind was back to normal) problems completing a sentence and confusion.

Lisa Emrich, Health Guide

5/30/09 11:28am

Hi KJ,

Yes, it can be very frustrating and confusing when trying to find a diagnosis...any diagnosis. Here is a post which explains a bit how the criteria for diagnosis has changed and developed over the years. Read "Beginner's Guide to MS: Multiple Sclerosis Diagnosic Criteria, The History".

And here is a post which explains the current means of diagnosis. Read "Beginner's Guide to MS: Do I Have MS? What Does It Take To Get Diagnosed With MS?"

It is understandable that they want to make sure that the tumor is not the cause of all of your vision problems. I know that this doesn't really help, but hang in there. For many of us, it took years to be diagnosed. I am one of those.

5/30/09 12:01pm

Thanks Lisa,

I've read this material over and over and still feel it is very subjective. For example, would tremors be considered a "clinically isolated event"? What about urgent urination leading to an "accident", anorgasmia more than half the time, inability to find words or keep up with a fast moving conversation? I have at least one enhanced lesion.

When I was six years old I had the mumps and chickenpox at the same time. The doctors didn't have trouble diagnosing both at the same time I was recovering from a tonsilectomy.

I know you and I are not doctors and MS is not like most other illnesses, but I'm really frustrated right now.

On a totally separate note - How is your music? I have trouble just clapping in rhythm when my health issues are acting up. Do you have any problems with a sense of timing?

Thanks so much,

Lisa Emrich, Health Guide

5/30/09 12:52pm

Hi KJ,

My music has definitely been affected by MS. There have been times where I can't move my left hand fingers in a coordinated way which reeks havoc with piano playing. My left hand has been too weak to lift it during one relapse which made holding my french horn extremely difficult.

I am overly sensitive to sounds and sometimes sharp loud noises causes my brain to "freeze up." When this happens I have difficulty staying in sync and in control. It's a challenge. But othertimes I feel okay and strong enough to be "normal."

Hey, I just took another look at your profile and see that you are in Centreville, VA. I'm in Falls Church. If you need a 2nd opinion neurologist, I recommend Dr. James Simsarian in Fairfax. His is the clinic I attend and his MS nurse is a wonderful resource. Neurology Center of Fairfax. There is also a branch in Reston, I believe.

With one lesion showing up right now, you might have to wait until a second lesion shows up on MRI. I would expect that your neurologist would suggest follow-up MRIs in the future to check for further developments.

Thanks for asking about my music. MS and RA have certainly affected that part of my life, but I'm still doing what I can.

5/30/09 5:00pm

Thanks for the information. I'm glad to hear that you can still enjoy the music. I've never had much talent with music but I have tried and tried on the guitar. Now it seems I have little sense of rhythm.

I'll keep the neurologist recommendation in mind. I just came off active duty with the Army and have five years of free medical care through the Veterans Administration for anything even vaguely service related, so I'm working with them for the time being. The VA considers MS to be "service connected" if diagnosed within 7 years of leaving the military and they are generally good with neurological issues. In fact, the VA has three "MS Centers of Excellence" and one is in Baltimore. It's supposed to be a super modern facility and research hospital. I have good insurance coverage through my employer, and they would probably pay for me to go Dr. Simsarian if I choose, so I'll keep that option open. I work in Reston, so that would be much more convenient than the drive into Washington DC that I'm making now.

Thanks.

Stephanie14

3/25/10 11:03pm

I'm sorry to intrude, but I'm just looking for SOMEONE to give me some sort of answer... I am 22 years old and I went to the doctor a few days ago with tingling in my arms and legs. My primary doctor told me it was called L'Hermittes phenomena (which I had never heard of.) It happens when you put your chin to your chest and you get almost like an "electrical shock" that goes down your spinal cord and into your arms and legs, creating a painful tingling sensation that lasts a few seconds. However, this has been my ONLY symptom. I saw a neurologist today, and he said it was either MS or a viral infection, but I would need more tests. He didn't even LOOK at the MRI, he just read the report. He sent me out of my office and called my primary doctor, telling him that he was certain that I had MS and I needed to be admitted into the hospital immediately. What is really bothering me is that he told me I was fine, even after I asked him twice if he thought I had MS, but then called my primary doctor and told him he was certain I had MS. I want to know if it is medically possible for a doctor to diagnose you with MS after reading a report of an MRI, or do they have to do more tests? Please let me know!!!! I'm scared!!

Lisa Emrich, Health Guide

3/25/10 11:36pm

Hi Stephanie,

I'm so sorry that you are doing through this right now. Here is a post which gives a brief rundown of what it takes for an MS diagnosis. Read Beginner's Guide to MS: Do I have MS?

There are several details in your question which make me want to ask more questions. Did you have the MRI done because of the tingling and L'Hermittes or some other reason? What did the MRI report say?

I would recommend that you get a copy of the report for your own records. If I take the CD disc of the MRI scans with me to my neurologist appointment, he will often take a quick look at it if anything in the radiologist's report has changed.

No single test is all it takes to make an MS diagnosis. Blood tests are run to try to rule out other causes of symptoms. But admittedly L'Hermittes is a really good indicator of a lesion in the cervical spine. Other tests may include evoked potentials and a spinal tap.

If your MRI showed lesions in your spine and in your brain, some "active" (meaning that they lit up with the dye injected in your vein) and some inactive, it might be possible to diagnosis MS very quickly.

Did the neurologist want to you to go to the hospital immediately for steroid treatments? Even if he didn't diagnosis MS right away, he might recommend highdose steroids if you had active lesions in order to try to speed recovery. Again, likely depends upon what the MRI report said.

It is terribly scary to be going through this. Many of us have been right where you are now (in one way or another). If you'd like more response from members in the community, you might post a Sharepost telling your story.

Please let us know how you're doing and what you find out.

Stephanie14

3/25/10 11:48pm

Ah! A response! I got the MRI because of the L'Hermittes, but that has been the ONLY symptom. I am just confused because I started having the symptoms 2 weeks ago, and the neurologist says I have advanced MS? or something like that? I'm not sure. He did not answer any of my questions and he said the only thing that the MRI showed was that I had "inflamed discs." He never said anything about lesions, so that is what is confusing me. My regular doctor said that it wouldn't be inflamed discs, rather, an inflamed spinal cord. The neurologist said these "inflamed discs" could be caused by MS, but are most likely the result of a viral infection. However, he turned around and called my primary doctor and said that I needed to go straight to the hospital to recieve steroid treatments because he was SURE I had MS. I wish this doctor would talk to me, and not someone else :( It's scary.

Lisa Emrich, Health Guide

3/26/10 12:13am

A viral infection can be the cause of inflammation, as this was an original diagnosis I had 10 years ago. At that time, I still needed the steroids to try to cut down the inflammation.

I agree that the terminology "inflamed discs" is misleading. Inflammation, lesions, spots, hyperintense foci, white matter, demyelination - these are things which I would expect to hear discussed.

What the neurologist says to another doctor and what he can officially diagnose with the evidence at hand may be two different things. Very hard to 2nd guess things, and frustrating too!

So first things first, are you doing the steroids? How is it going? You might find this post helpful - http://www.healthcentral.com/multiple-sclerosis/c/19065/49716/rage

Q: How Did They Diagnose MS Before MRI's?

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