MS diagnostic criteria

[MSer4]

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?    

[Cleveland Clinic]

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

[pneeb419]

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??

[MSer4]

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.

[JonM]

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.

[Linda from El Cajon]

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.

[reecey68]

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.

[dlhigh]

lesions are generally white spots on the mri's.  If you google under images- mri's of lesions, you can take a look and compare with normal mri's.  I believe even most neurologists are not trained well enough to diagnose ms without conclusive positive tests to back up the diagnosis which can take many years to establish, this is why the number of people with ms is believed to be much higher than the count they have on record is currently.  Part of this is due to the expense, waiting period and lack of follow-up with people who suspect they have ms in order to establish the progression and addition of new symptoms, but the greater problem I believe is the inability for neuro's to detect ms.  When ms is suspected, patient should immediately be referred to doctors who deal only with ms patients in order to be properly evaluated.  There are such doctors, but good luck getting a referral to them, that only happens if diagnosed with ms and if neuro believes him/her self to be unable to treat your condition and you don't insist upon one.   SUCH IS THE WAY OUR WORLD HAS BECOME TOWARD ALL THOSE SUFFERING WITH DEBILITATING AND TERMINAL ILLNESSES.  Here's to the doctors who still care enough about the patient to admit they don't know enough to help and refer them onward to get it!
As I always say on here TO ALL-  persistance and patience are the two elements required.  Be proactive in your advances to getting well and never take just one doctors diagnosis as the truth.  Whenever time is of the essence- always request to be put on cancellation lists when scheduling with new doctors who are back logged for months or better yet, request to be referred to another doctor who can see you sooner.  To those who are suspected of having cancer, demand tests that can confirm it, be done immediately and if cancer is diagnosed, speed in getting aggressive treatments is needed and when patience is not. Wishing you good health.

[davidcindy20]

My wife was found to have approximately 3-4 lesions on the white matter of the brain four(4) years ago.  This was found during an MRI, with and without contrast, due to a total body seizure that lasted approximately 4-6 hours.

In April 2006, she was found to have approximately 20 lesions during a similar MRI.  A spinal tap returned with "normal" findings.

In May 2007, another seizure resulted in total mobility shutdown, with aphasia.  Partial mobility and partial aphasia lasted four(4) days.  An MRI with and without contrast showed "no significant changes" from the 2006 findings.

QUESTION:  Is it possible to have MS, without the positive spinal tap findings?  If so, why hasn't this issue been discussed by her neurologist?

[EL18]

Hi, i read your thread, sorry you are going through so much.  I've been posting on the MS patient forum on this site for sometime.  There are some great people who might be able to give you some of the answers you are looking for.  They will certainly give you the support.

[Goodkarma5]

Hi eveyone, I am really sorry that you are all having to go through the nightmare of getting diagnosed, as well as the suffering you are dealing with
My story is too long for this thread, but I want to answer the question regarding the spinal tap results.
I have been seeing  my Neuro off and on for 15 years, and my Brain MRI shows MS type lesions. By his talk with me, it was obvious he felt I did have it. He then said, well, do you want to get the spinal tap? I wasn't sure why he would ask me that. To me, it was up to him, until he explained why he asked. He said "the problem with the spinal taps is that we get alot of false negatives." Why? "you have to be in the middle of an episode in order for the results to be positive and even then, its still not a sure thing." It can screw things up for the patient, at least in my mind. I agreed  to it .Until I came home and really thought about what he was trying to tell me. I am 42 years old, and have another spinal cord compression on top of where I already had a surgery. I also found out I am a rare Type 1 Diabetic ( went down to 90 lbs). I have had to file for Soc Security Disability after a long 17 year job with a great company, All this in 3 years time, but chasing answers for 15. I feel he is trying to help my case with my MRI results and doesn't want to screw it up with a false positive , does that make sense. I feel for all of you. I can tell my Neuro feels really bad that I was put through so much all these years by so many Dr.s . He told me way back that something would eventually show up.And like so many others I was diagnosed with Fibromyalgia by my Rheumy ( yeah right) Even he snickered about that! He said that is their way of dismissing me.  I will ask him at my next visit if 15 year of episodes and MRI lesions is enough for the diagosis -(hehe). At least I still have humor. I will tell you what he says. He is a very well respected Dr. in Mich. I will pass on his advice to me and all of you. I  hope I can help.  Take Care everyone, and don't give up.

[Goodkarma5]

Hi there, me again..

Sorry for the mistake...I meant my Dr. didn't want to mess with my diagnosis up with a false negative for the spinal tap.

oops...

[newtoms]

Hi everyone.  I'm new to ms -- just diagnosed February 2007.  I'm a 49 year old female and had my first ms flare-up February 2006.  That was diagnosed as a stroke because I had slurred speech and a weakness in my right arm for about 3 days.  My doctor sent me for a MRI and the neurologist dx a mini stroke, even though the radiologist who read the MRI put on the report possible demyelinating disease because of some white matter lesions.  The neurologist said with no history of any other attacks, nothing in my family, my age, and my history of high blood pressure it was probably a stroke and she wanted to see me in a year.
February 2007 I went for my follow-up MRI and the radiologist reported again white matter lesions, possible MS.  The Neuro sent me for a spinal tap which came back positive but all she would say was that it was indicative of MS.  
She wanted to start me on Rebiff but before I was going to take a shot 3 days a week, I wanted a second opinion.  I found another Neurologist and I like him.  He was very upfront with me and said YES I had MS.  He explained to me the different treatments and the one he was suggesting was Avonex.  He told me not to be afraid of self-injecting once a week in my muscle.  
I go back to him in September for my six month review.  I had my MRI last week.  I had no new lesions and the ones I had in February were shrinking.  I guess the Avonex is working.  I haven't had a flare-up since the first one in February 2006.  The only problem I have is I get heavy legs.  That started last year but I thought it had something to do with the stroke I thought I had.  The second neuro said that probably wasn't a stroke, but a MS flare-up.  I notice it because I'm slower now.  I stopped taking aerobics and started taking yoga to try to improve.

My question is do the lesions normally shrink and do the lesions have anything to do with flare-ups.  I asked my neuro how would I know if I'm having a flare-up and would it be the same thing.  All he could tell me was that I would know and that no, it wouldn't necessarily be like the first one.  This is the scary part.

[AnyaD]

I am so lost and confused now. I was experiencing some numbness in my thigh for 3 weeks and decided to see a neurologist. She said it could be a sign of MS because of my age (I am 27) and ordered Brain and Servical spine MRI and gave me Quick Start Guide for Avonex. I didn't have any neurologycal signs now, and my numbness went away on its own before my second visit to her. The MRI found several nonenhancing cervical spinal cord lesions and several small no posterior fossa lesions. A year ago I had a severe case of staph infection in my neck, back and leg and I learned on the internet that staph infection could cause lesions but I never had MRI done back then, so I can't be sure of anything. She suggested I had MS and scheduled Lumbar Pucture. I had the spinal tap done and was waiting for results for a week. At the same time I made an appointment with an infectious desease doctor because MRI also showed some tubular  structure in my back. I was afraid it could be staph again and I went to see him again. He could pull up from the computer my spinal fluid results and told me that everything looked good. I went home and my neurologist called and said that my spinal fluid had abnormalities and she needs to start Avonex Treatment. I went back to the infectious desease doctor and he said that my neurologist called and he is sorry he mislead me. I asked to print me out the spinal fluid report and I am reading the following "CSF Protein Electrophoresis is negative for oligocional bands". Why did my neurologist tell me to start treament right away? Was there anything else she could find in the fluid that would prove I have MS? I have a test for evoked potentials scheduled in the middle of September. I don't have any simptoms at all and I don't feel comfortable to take drugs without being sure I have MS. I just don't know what to do.....

[taylor2005]

They thought I had MS but it was acute deciminated encyfamylytus or ADEM. It was diagnosed as that a few months later because I did'nt have any lesions with the follow up MRI.

[tirdofbingsck]

I am really confused at the moment.  On a follow-up MRI after a car accident it was found that I had an "empty sella" and "white spots" present.  My PCP sent me to an endocrinologist for the empty sella.  When all my hormones came back normal except my Vit. D, the endocrinologist sent me to a neurologist.  The neurologist ordered a MRA and transesophegeal (sp) echo which showed a perforated foraman ovale (PFO).  So the neurologist sent me to a cardiologist and a physical therapist that specializes in balance problems. The MRI results list MS as one of the possible causes of my symptoms,along with Lyme disease and TIAs.  The physical therapist thinks that it is MS based on the tests he ran.  Could it be a combination of the two and how do I sort out the symptoms of one over another.  I have headaches, blurred vision which at times goes completely black, palpatations, almost constant nausea/occ. vomiting, extreme fatigue, extremity weakness (esp. upper extremities), numbness in toes on both feet, almost constant dizziness/lightheadness, a feeling of "swimming", problems with memory, concentration and focusing.  I often have difficulty recalling common terms and words which make me look really dumb.  I lose my train of thought alot.  My father had Alzhemiers (sp) and for the past year and a half that has been my secret fear, that I was losing my mind and sinking into the depths of this horrid disease. I work full time but I'm finding it more and more difficult to hold it all together.  I expend and tremendous amount of energy trying to focus and concentrate.  I often spend extra time after my work hours completing tasks so I can start fresh the next day. Does anyone have any thoughts?  I just really want to feel "normal" again!  Thanks!

[KJS1963]

What are the symptoms of MS?  I have had alot of neurological problems over the years, but early on they were all so sporatic, I would worry then dismiss them as they would go away for awhile......I do have b12 and iron def which doc has run numerous tests on and so far my anemias are unexplained......I have crohn like bowel symptoms  but so far the tests have been negative, finally I told all my docs, look now I have these really bad episodes of tingling and numbness and PAIN in my neck, burning pain, pain in my left foot is horrible, I'll have sharp shooting pain come and go just about anywhere, my balance has been really bad for about a year or two, its now peaked, I have fall constantly because I cant feel my legs or feet, I have bruises constantly all over my legs from these falls, or unexplained bruising because alot of the time I just dont feel it when I run into something, my right hand goes numb more than the left which is no fun as I write with my right hand, I have had alot of confusion, problems remembering things like how to spell words, what happened just 2 days ago, I really have to struggle mentally here. so far the docs are still running more tests, but my Primary Phys thinks all these symptoms are due to the B12 Defiency,,,,,,,,,,,,but I started my shots 7 weeks ago [and although he told me to wait at least three months before I expect to feel better} my symptoms have grown so worse, how is that possible if the symptoms are from b12 DEf, I mean even if I dont feel the benefit of the shots for awhile, shouldnt the fact that I have been getting them for 7 weeks now at the very least NOT make my symptoms worse......I wory about MS, please tell me the symptoms so I dont waste time here, if theres a chance of MS I want to get checked for it mimmediatly
thanks, kelly

[ksushant]

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