MS Diagnosis
Why is Diagnosing MS so Complicated?
Getting a correct diagnosis is essential for starting the process of caring for your multiple sclerosis. If only it was a clear, easy journey. The majority of people who have MS can tell stories of strange symptoms that their primary doctors couldn’t understand or simply wrote off as “stress-related.” I know that my own diagnosis took almost 7 years for my case to be considered “definite MS”, despite obvious multiple signs. (My personal journey of frustration and confusion is the basis for this MS website.)
Oftentimes, unless a first attack is severe (such as one affecting vision or causing substantial paralysis of a limb or limbs), multiple sclerosis symptoms can mimic those of other diseases or conditions, such as lupus, Lyme disease, or fibromyalgia, to name a few. Add to this the fact that multiple sclerosis attacks can cause sudden symptoms that then disappear, and it’s easy to see why diagnosing it is often a lengthy, confusing process.
The following are methods that doctors use to diagnose MS, and usually 2 or more criteria are needed to make a definite diagnosis:
Diagnosing MS by Patient Symptoms
In the best case scenario, a patient’s primary doctor will refer her or him to a neurologist, a specialist who deals with the central nervous system (the brain and spinal cord and their nerves) and the peripheral nervous system (distant nerves.) This may happen if a patient presents with neurological symptoms such as tingling (pins and needles), numbness, burning feelings, and/or vibrating sensations in one or more limbs or the torso. These are very common symptoms of an early multiple sclerosis attack. Other early symptoms of MS include optic neuritis (which causes optic nerve inflammation and subsequent vision impairment or temporary blindness in the affected eye), double vision, and limb or overall bodily weakness.
A neurologist assesses these symptoms as a basis for possible MS, since these symptoms are usually how multiple sclerosis is first suspected.
Diagnosing MS with Magnetic Resonance Imaging (MRIs)
Once physical symptoms look suspicious for multiple sclerosis, a neurologist might send a patient for MRIs. These tests, which operate with high-field magnets, are used to view the brain and parts of the spinal cord, where MS attacks and subsequent damage occur.
If MS lesions or scars, areas where nerve coverings are damaged, can be seen on the MRIs, this is another criteria to diagnose possible MS. Such scars are particular to MS and can rule out other conditions that mimic it.
Diagnosing MS with a Lumbar Puncture (Spinal Tap)
Another definitive multiple sclerosis test is the lumbar puncture, which draws spinal fluid from the spinal column. This fluid is then tested to rule out Lyme disease, meningitis, syphilis, and other neurological illnesses. Neurologists look for a certain element, something referred to as oligoclonal bands, present in the spinal fluid. Roughly 80 – 90% of MS patients have this present in their spinal tap fluid (Mult-sclerosis.org.)
On a similar subject, MS cannot be diagnosed through bloodwork, but several other conditions/illnesses such as lupus, Epstein-Barr syndrome, and Lyme disease can be ruled out.
Diagnosing MS by the Presence of a Family History
Multiple sclerosis has not clearly been proven to be hereditary, but there seem to be patterns of the disease in some families. Because this is not a definite criteria to determine MS in and of itself, it might only be used as further evidence if the above-mentioned criteria points to multiple sclerosis and a patient does have a close family member or members with the disease.
Why is Proper and Early MS Diagnosis so Important?
If you suspect you might have multiple sclerosis, your best bet is to push, push, push for an evaluation with a neurologist, especially one who is considered an MS specialist. Many primary doctors don’t have the background to know subtle multiple sclerosis signs, such as general fatigue or weakness or even mild numbness that lasts for a week or so and disappears. If your insurance doesn’t require a referral to see a specialist, don’t wait for your primary doctor’s suggestion: make an appointment with the neurologist yourself. If you need a referral and your primary doesn’t think you need to see a neurologist, you might want to consider finding a new doctor.
The reason I am so emphatic about early and proper diagnosis is that there are various disease-modifying medications available today that weren’t around before the 1990’s. Early diagnosis and the start of one of these medications can drastically change the course of many people’s multiple sclerosis disease courses. Everyone responds differently to medication, but many patients have positive results and can prolong periods between attacks and have milder attacks when they do happen. There is currently no cure for MS, but the available medications can slow disease progression and possible disability.
Lynette Says:
Dear jen,
I’m a 38 year old female with 2 children. I recently stumbled upon your website. I’m e-mailing you for some help/ information. It is unfortunate to inform you that I was just diagnosed with MS this March. I woke up with a vison problem in one eye and my face just droopy. I went to the doctors and he claimed that he was positive that it was Bell’s palsy. I took the meds and I got some relief. My face was getting better but my eye was still not improving. I went to a Neurologist and did all of the MRI’s and Spinal Tap it all came back with 3 mm of lessions in my brain. So far none in my Spinal Cord. I still have slight difference on my right side of my body though. It does not completely feel like my left side. A sight weekness in my arm and leg. I had a MRA for any anurisms without contrast though. My question to you is can the olicoclonal bands only show activity in you brain or just comparing it to your CSF (blood). I thought that it would only show that something is going on with your brain. As you know, this is hard to understand. I have other things going on to with my body such as a lump in my throat since Aug and gastrointestional issue too. Could all of this be connected? What type of meds are you taking and what kind of diet are you on? Please help in shedding some light on this terrible Diesease.
Thank you for listening
Lynette
Posted on April 4th, 2009 at 1:57 am
Jen Says:
Hi Lynette—
Thank you for commenting. As I’ve been told and through my own research I’ve learned that the oligoclonal bands that often show up in people who have MS reveal elevated protein levels as a result of inflammation. They can indicate inflammation in any part of the central nervous system (CNS): the brain and the spinal cord.
Symptoms of MS vary so much from patient to patient, so it’s a good idea to let your neurologist and primary care doctors know about these other things you’re experiencing (gastrointestinal problems and the lump in the throat.) These things could be connnected or not. MS is such a crazy disease that it gets very difficult to tell the difference between disease symptoms and other problems. The vision problem and the weakness in some of your limbs could be considered more typical MS symptoms. What doctors typically look for when making a diagnosis include MS symptoms,oligoclonal bands in spinal fluid, more than one lesion in the brain and/or spinal cord on MRI, and certain criteria which they find during a physical exam (called “MS signs.”)
I currently take Betaseron, one of the interferon disease-modifying drugs (DMD.) There are several options with this type of medication, and you can speak with your neurologist about which type you would like to take, if you so choose. I don’t endorse any particular medication because every patient reacts differently to them. I will say that I’ve had a lot of good results from my medication– it does work for me and I’ve been taking it for the past 4 years. I don’t follow any particular diet. I still eat junk food and drink occasional alcohol.
I hope some of this helps. MS is scary (especially in the beginning), but there is a lot of help out there—support groups, the National Multiple Sclerosis Society at http://www.nmss.org, counselors, fantastic neurologists— that can make it a little easier and less frightening.
Feel free to ask any other questions if you have more or if they come up in the future. Thanks for visiting my website and good luck to you on your MS journey.
Sincerely,
Jennifer Gerics
Posted on April 5th, 2009 at 11:56 am
Kathy Says:
Thanks for all the useful information on your website. I am 41 year old female living in Canada.
Although I have not been diagnosed with MS–I have been having quite a few of the symptoms for the last 2 years or so and do have an appointment with a neurologist on August 10. I have recently also been to an optometrist for my annual check up and mentioned my “spells” that I have where I lose my balance, sometimes stumble, and recently drag my right toe..she said optic nerve is ok. Is it possible I may have MS and it just hasn’t affected the optic nerve?? I have no other vision issues (other than I wear glasses/contact for distance but have done so for almost 30 years).
Any information will be useful!
Many thanks.
Posted on July 10th, 2009 at 7:45 pm
Jen Says:
Hi Kathy–
Thanks for writing. Having MS doesn’t necessarily mean you will develop optic neuritis or other visual problems. Although they can be somewhat common in MS patients, they are not a definite for every patient. I have never had ON, but I have had double vision. I know other MSers who have never had any vision changes.
It’s great that you’re going to a neurologist soon. Some people wait a long time or have trouble getting a definitive diagnosis once they are seen by one. Hopefully your experience will be straightforward and conclusive, but don’t be alarmed if it isn’t. The neuro will probably send you for MRIs of your brain and possibly parts of your spinal cord. A lot of times these tests give enough evidence for a diagnosis.
I hope this helps and feel free to comment again. I’d also like to know what you hear from the neurologist. Thanks again for reading and good luck to you : )
Sincerely,
Jen
Posted on July 10th, 2009 at 10:18 pm
Kathy Says:
Me again, writing again from Canada.
Had my MRI done on October 22 and all was clear.
So back to square 1 to figure out what is causings my dizzy spells, falls and balance issues. Thankfully none since August.
Again, thanks for your information regarding optic neuritis (from July 10).
Posted on November 22nd, 2009 at 9:16 pm
Jen Says:
I’m glad you wrote back, Kathy. Sometimes getting a diagnosis for something can take quite a while. And sometimes when an MRI shows nothing, a patient may still have MS. It’s tricky. I’m wishing you luck in getting to the bottom of all this, and I’m also glad you haven’t had an episode since August. Hopefully things for you will remain stable.
Jen
Posted on November 23rd, 2009 at 5:50 pm
terri Says:
hi there, this is proberbly going to sound very strange but i just dont know what to do, i feel very alone and frightened to see my doctor to ask for help. i have so many symtoms and sometimes end up telling myself its just in my head and feel like im going crazy. im only 24 but at a lose end i have blurred vision dizzy spells, extreme muscle pain and can sometimes lay awake at night with muscles tightning cramping and twitching. i’ve had a few times where a certain part of my body just tightens to the point im unable to move it for days without it seriously hurting along side all my other symtoms, but after a few days it just disapears and i feel fine again and even more confused then before! have you any advise for me as i just feel as though if i walk into my docs and say i think i have ms that i will be laughed at.
Posted on January 3rd, 2010 at 11:38 am
Jen Says:
Hi Terri—
I don’t think this sounds strange at all. It actually sounds like SOMETHING, but the question is “What?” Since I’m not a doctor, I would suggest that you visit your primary care physician for a work-up. That’s how many MS patients start the journey towards diagnosis. If you find your primary doctor to be unhelpful, unknowledgeable, or unwilling to refer you to a specialist, then you might want to seek out a neurologist (an MS specialist) on your own. This type of doctor is the one who can diagnose multiple sclerosis (or rule it out.) I also suggest that you continue to pursue this until you get a satisfactory, definite answer. You may change doctors a few times, but make sure that your eventual doctor takes you seriously.
And please know that there are many of us MSers and others with conditions that are here to support you, whether you have MS or not. If you seek out a local MS organization near you, you may also find contacts for good doctors and/or support networks.
I’m hoping the best for you: feel free to email me or comment again. I’d love to hear how things work out. womenzhealth@yahoo.com
Sincerely,
Jen
Posted on January 3rd, 2010 at 11:58 pm
Donna to terri Says:
Imagine at 60 years of age my cardiologist, wearing a serious face as I sat across from him in his office, informed me to see a neurologist for MS Diagnosing and if there was any problem about his seeing me he wanted to be called immediately. I didn’t think that was possible to have MS at 61; nor how my cardiologist was so adamant about my going. I felt he was seeing me for myself and not my act. Perhaps his having to lift me onto the examination table, after seeing how I lost my balance walking to the table! Sometimes my head feels like I have a tight cap on and my brain is not getting enough oxygen and I become very dizzy. Anything can set off that feeling and unfortunately when I move that is usually when I trip, hurt myself. My leg pain has always been associated with a back problem, but one leg will collaspe and I end up falling. There are numb spots on my legs that tingle and when I get up to walk I fall. I have a note from 2005 stating I could only work 4 hours a day with 10 minutes every two hours to get up and walk around. Minimum days of work was 4. That was due to my not being able to sit that long, my legs would tingle and very painful. Strange is
I sometimes feel someone has my belt and is tightening it on me – so tight I find myself having to find a bathroom quick to vomit. My legs are slowly becoming deformed. So far this year I’ve been to the ER for falling from feeling dizzy and had 9 stiches in my face and another trip due my one leg collapsing and my dizziness fell over the last step, back to the ER for a bad sprain and possible legimate problems. My memory is terrible and as hard as I try to remember I’m embarrassed. If I hear “I already told you” like I was 4 years old, I’ll see a psychiatrist (well I already do plus a psychologist. I’m married to a psychologist and RN who works in ICU. I had to see an eye specialist because I had pressure behind my eyes and both eyelids were twitching. My one eyelid was down past my pupil. Of course I hadn’t complained of having a stroke or notes indicating a prior concern, so I paid $5K to have my eyes fixed so I could see. ALSO, I had twitching in my bottom lids on a constant basis, I saw the eye specialist to have botox put in the lower lid so I would stop seeing the world thru a 1920 projector. I was informed the eye twitching was neurological. My vision changes all the time. When I went to the neurologist the nurse said I read the letters fine! I had no idea what I was seeing or reading and I’m sure I failed miserably!!! I Plan to discuss that at my next visit as well as his records stating I was a depressed woman. My husband was with me and I asked him if I was depressed. He agreed with me that I wasn’t. Fed up maybe but not depressed.I was quiet and answered his questions, oh and made a few jokes! It’s gotten to a point I don’t want to be around people because of embarrassment.I feel like an accident or embarrassment may happen at any time! My hands tremble so that when I go to communion, I can’t kneel at the alter (afraid what will happen when I get up)and so I stand (my body visibly skaking all over). When the priest gives me bread, my hands are trembling so much it’s apparent to those around me, and when the Priest brings the chalice, I cross myself (meaning no wine) solely do to the fact that my hand is shaking/trembling so bad I am unable to assist to help bring the chalice to my mouth. I get tired a lot. But even more tired of not knowing what I have. I go to diagnostic testing next week (MRI/EEG fine). All I want is a name for what is going on with me. Maybe not MS but I want a diagnosing with a name. It’s depressing not knowing what’s happening. I will find out!! I’m tired of feeling the fool. You take care my friend! By the way, I was told that cardiologists are the primary physicians that send patients to neurologists. Interesting!
All I want is a name, an explanation for what is going on. We need peace in our lives!
Posted on March 9th, 2010 at 9:06 am