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Neurology  (Expert Forum)
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MS diagnostic criteria
Answered by
Cleveland Clinic -
Cleveland - OH
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MedHelp Member's Question

MS diagnostic criteria

by MSer4, Jul 20, 2007 12:00AM
Ten years ago I had one incident of optical neuritis and then no symptoms until this past spring. I then experienced: Being off-balance, weakness, tingling, foot drop, and spasticity in my right leg, and vision abnormalities in my left eye. I had one clearly defined episode which lasted two weeks. My G.P. ordered blood tests which ruled out diabetes, blood calcium problems, vitamin deficiencies.
I then had a brain MRI which showed "numerous" lesions and white matter signal abnormalities in the subcortical and periventricular areas with some enhancement along my left optical chord.  I was told that the results of the MRI were highly suggestive of a demylenating disease such as MS.  
Went to see a neurologist and she seemed ready to diagnose me based upon my clinical presentation, history, bloodwork results, and the brain MRI.  She wanted more tests however and so I had visual and auditory evoked potentials and a C-spine MRI.
The C-spine MRI and the visual and auditory evoked potentials came back normal.

My neurologist told me that she wanted to diagnose me with MS but that she needs more evidence.  She wanted me to do a spinal tap but I declined, thinking she has more than enough evidence.  The other way to gain evidence would be to get a second MRI in 4-6 months from my first brain MRI.  

Is this the necessary protocol in order for insurance to pay for the interferon drugs? Is it possible that I do not have MS?  And if this isn't MS what else could it be?    
Doctor's Answer

by Cleveland Clinic, Aug 31, 2007 03:00PM
To: MSer4
Thanks for the note and sorry to hear about your problems. Without going into too much detail it sounds to me like you fullfill the criteria for multiple sclerosis. I think the additional tests being negative do not change my opinion. Sounds to me that you need to see someone who specializes in MS treatment. I'm not sure where you are located but at CCF we have the Mellen Center that specializes in MS diagnosis and care. If you can not come to Cleveland they you should seek a larger center locally involved with MS care to discuss treatment options. The appointment number is 216 444 8600. Best of luck. GS
Member Comments (16)

by pneeb419, Jul 21, 2007 12:00AM
To: MSer4
I have always been told to get a dx of MS, you need to have 2 separate episodes lasting atleast 24hrs(?).  I had just one incident (balance issues) and an MRI that said 'suggestive of a demylenating disease such as MS'.  But based on just those few words, my neuro wanted to start me on meds as soon as possible.  No prior episodes, no health issues ever, but he didn't feel the need for additional tests.  It was ME that refused unless I had more proof.  So I sought  a second opinion at a well known MS clinic (Mellon Center at Cleveland Clinic).  I actually got to see the MRI film there.  It didn't look too bad, but I was able to view the films and could see the white matter.  I'm kind of a 'see it with my own eyes' type of person.
The reason that I am even mentioning this is because you obviously had 2 separate episodes (ON 10 years ago) and the problems you are having now. Plus your MRI shows several lesions.  What more is needed to give you the dx that you need so you can start treatments?  I believe in not jumping the gun like my neuro wanted to do, but I don't think yours is doing you any favors by making you wait.  Maybe you should be proactive and seek a second opinion as well??

by MSer4, Jul 22, 2007 12:00AM
To: Thank you
I agree.  I am thinking of finding an MS specialist.  I feel she has more than enough evidence of MS.  But I am no doctor and certainly not a neurologist.  Yet something doesn't seem right about this scenario.

by JonM, Jul 22, 2007 12:00AM
To: MSer4
I have MS and although I never had a first episode or optical issues, I was, am clearly MS.  What you describe sounds very much like MS and I'm puzzled why your doctor is hesitating.  You should start treatment ASAP.  All evidence suggests that the sooner you start treatment the longer you can put this disease off. it may not be a cure but why trade a year or two of maybe saying you don't have it and all the while the disease is still running in the backgroud when you could be modifying it.  The side effects of interferon are not that bad, so why wait???  Here is a link to the McDonald criteria, which is the generaly accepted practice for DXing MS.
  
http://www.mult-sclerosis.org/DiagnosticCriteria.html

And I had a spinal tap.  I did it in a hospital under local sedation and honestly it wasn't that bad at all.  You just have to make sure you stay in a laying (flat) position for atleast 4 hours after the procudeure if not longer.  The longer you can stay flat after the tap, the more likely you can prevent the dreaded spinal tap headache.  But if that happens you can self treat quickly by lying down again.  It happened to me about 3 days later and it was a very debilatating headache, caused by a pressure imbalance in the fluid between my spine and brain, but simply laying down alleviated 90% of the pain within 15 minutes and the next day it did not come back.  I agree, you ahould be seeing a NeuroMD with a large practice of MS patients.  My MD has 700 MS patients and is very agressive and very up on the latest trails, trends, etc.  And I don't know about your insurance, but I was told that if an MD DXs you with MS then they will pay.  Interferon is standard treatment.

by Linda from El Cajon, Aug 02, 2007 12:00AM
To: ALL
For the past six years I have been expeiencing all of the symptoms of MS. I have had four episodes in the last year and have had a spinal tap and four MRI's. The last NueroSurgeon said he was sure that they had at last found out what was wrong with me as the MRI showed eight lesions and would I please undergo one last test. A spinal tap. When that came back normal he said then that there was noithing wrong with me. That my altered gait issues, my imbalance problems and my tremors and sometimes inability to hold on to things were just from not getting enough sleep. This was all after alerting my family and my job about what was wrong . At the time I carried a firearm for a living and was called upon daily to use it if necessary. He then refused to send me to any other NUEROLOGIST for a second opinion. I found one on my own and I have an appointment to see what he has to say. I say that time is wasting. It is not my wish nor the wish of my family to have a disease that can be life threatening and deblitating.It is my wish to get treatment for whatever it is and to do it now. I guess you could say Iam so tired of being so tired and dizzy and being made fun of. I hate desk work when I used to catch the bad guys.

by reecey68, Aug 04, 2007 12:00AM
I have had MS-like symptoms for 20 years, since I was 19 but at the time had no clue as to what was wrong with me. It started out I would get this electrical shock like sensation down my back, vertigo which would lead to nausea/vomiting, I would get very hot/sweaty and extremely tired. After I laid down when I woke up I was fine. This type of episode would come and go sometimes 2-3 times a week and sometimes once a month but in between episodes I was back to normal. The Doctor's looked at me like I was crazy. One Dr said I was just depressed, one said it was anxiety attacks, and one actually said I was faking for attention. For at least 15 years these attacks would continue. I had MRI's, CT scans, had it all. About 4 years ago I started having episodes of double vision that would come and go, went to an eye DR who said my eyes are fine and was sent to neurologist, I never went have just dealt with it. For about the past 8 months a bunch more symptoms started occuring with the present ones like parasthesia, I would get up to walk and my legs were like jello and cant walk, muscle spasms/tremors. I have went back to the neurologist and should know something this week. My question is what to the lesions on your spinal cord and or brain look like. The MRI of my brain only showed one 'spot' he said not typical of MS but mor for migraines so I had to have another of the cervical and lumbar spine. I have looked at the films but don't know what to look for.

by dlhigh, Aug 04, 2007 12:00AM
To: reecey68