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.
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
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.
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!
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 : )
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).
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.
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.
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. firstname.lastname@example.org
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!
I have had numerous symptoms over several years which seem to be MS or something similar. Since I am now 69, my doctors tell me it is not MS because of my age. I have had a myriad of tests but not a spinal tap. Should I insist on it?
I would pursue this further, since it’s your life and no one knows for sure if it IS MS (or not.) The spinal tap can be quite definitive.
Thanks for this site.
How long does it take to develop MS?
I am 39 years of age. 23 years ago I developed a tremor in both hands, and also regular headaches. Last 10 years I have also had problems with fatigue, which has never been diagnosed. During the last year, I have gotten pains in both legs, and now also tingling and numbness in both hands (left hand is worse). I also have painless twitching all over the body.
Could this be MS-related?
PS: I have a doctor appointment in 2 weeks.
Interesting question. I guess it depends on the person. What you’re experiencing might be MS or it might be otherwise. Best to consult with your doctor, who will likely conduct tests to determine. MS can be hard to diagnose at first, unless there is significant clinical evidence, such as nerve lesions seen on MRI or a positive spinal tap. Good luck with your visit and thank you for reading.
Hi, had odd not fun symptoms since around 30yrs. Felt great when pregnant, 2nd and 3rd trimesters. 5 months ago felt like I was dying. We were @ 2hrs out of cell phone,etc in a car. I felt really sick, both arms and legs went numb and paralyzed, lost left vision, then threw up violently. That was around 1 1/2 hrs. Took about a week to get up much. Very tired, dizzy, bee stinging in feet and hands, stabbing in my head, belt around left ribs, brain felt like scrambled eggs, tremors in hands and some fingers, left eye foggy on and off and lost left periferal. This went on for @ 2months horribly, subsided for a month w/ lesser and now is back. Fallen 3 times now. Went to 2 neuros: not a stroke, one asked if it were because of depression. My internest is w/ me, sent me to a physiatrist for nerve tests: he said MS and wants me on steroids now.Had lumbar, neg. Brain mri 2 new small lesions in white matter, thats it. Any ideas anyone. Loosing my independence!
PS. this has been 25 yrs now of STUFF. Blood tests were neg for differentials, neg spinal tap. 2 3×4 mm lesions on white matter. Physically fit so i pass their “physicals”. Took me 3 months but am back to walking 4 miles/ day. Sleep is not good, legs, feet moving, electrical shocks in legs and head. Please anyone, ideas?
I wish there was an easy answer, Melissa. I try to stay connected with MS friends both locally and online. I would suggest looking for a local in-person support group where people know what you’re going through and you don’t have the pressure to explain yourself. I’m hoping you are in the U.S., because I have a link for you to connect you to a local National MS Society chapter in your area: http://www.nationalmssociety.org/find-a-chapter/index.aspx
Reach out and stay connected with family and friends and other MSers. If you want to speak privately with me, I can be reached by email: email@example.com.
And above all, never give up. : )
I’m not sure exactly why but this site is loading incredibly slow for me.
Is anyone else having this problem or is it a problem on my end?
I’ll check back later and see if the problem still exists.
Gisele— I hope the problem righted itself: I haven’t heard this issue mentioned before. Thanks for stopping by.
Hi to everyone, the contents present at this web page are genuinely amazing for people’s knowledge, well, keep up the nice work fellows.
Hi terri I know what your going through my name is Carol i think i might have MS because im getting crazy symtoms like i start to get a hot flash like im sweating but im not blurry vision body shaking loss of balance and hearing loss or ringing bells all while standing kneeling or sitting and i went to a eye specialist and he told me that i have black spots in the back of my eyes from all the spells this started back in 1996 than in 2001 the spells got worse then in 2007 i seen a ms doc.he strongly told me to go to his ms semiar and said I need to go to this semiar. but the mri came back before the semiar and he did a mri and it came out normal they ruled out seizuresand diabetes and lupis.and iv been diagnosis with oab,ibs ,acid reflex d and fibro.and my cousin has ms and my other cousin has it and my moms sister getting tested for ms because it runs in the family to. and they told me that i have ms but i just have to have it confirm im just scared because i dont know whats going on w me.now i get numdness tingling tremers weakness off balance and iv been getting alot of charlie horses and always tired and stiffness and my feet is cold too can someone please tell me what is wrong with me because i dont know does anybody know what it could be i ve been going though this sense i was 18yrs.old its just getting worse.on 10/18/13 i had a strange ep one morning I woke up and sat up in bed started walking to the bathroom and walking sideways like I was drunk and I was lightheaded and my leg wanted to give out so I started walking back to the bedroom same thing happen if my bed was not there I would’ve fell right in to the corner of my dresser this has never happen before my right side did not feel right for a while after that lasted for a couple days.i went to so many doctors and said it was panic attacks and they wanted to stuff drugs down my throut. in sept. of this year I had a mri of my brain and spine and they found blood vest tumors in my thoric spine and I had a nerve test done and it was normal carol
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I’m 31 with 3 small kids at home. Recently I’ve been experiencing MS symptoms, such as numbness & tingling on hands and legs, lightheaded all the time, back pain, occasional vision problems, weakness ( keep dropping things as if I’m loosing grip, light muscle spasm, facial tics and numbness, pain andringing in my ear it feels like I get new symptoms everyday…. 2 years ago one night I had this tingling and numbness all over my body,fatigue and dizziness. I got so scared I thought I was having a stroke even though I don’t have any cardio issue. So I went to my doctor had blood test done and I was diagnosed with low iron deficiency anemia. Was put on 2 iron pills a day after a week all my symptoms went away. Then just 3 months ago I started experiencing the same symptoms went to my doctor had blood test done and was told that I have low iron level again but without anemia so I was prescribed 1 iron pills a day. After more than a month on iron nothing is changing. Had a full physical and was told its nothing maybe it’s just stress or sleep deprivation since I don’t really have a good sleeping habit ( I think I have insomnia). Went to another dr said the same thing and refused to refer me to neurologist…. I don’t know what else to do… I am having an eye exam this weekend and hoping to seek answer since vision problem is one of the primary symptoms of MS.
I was finally diagnosed by a neuro-opthamologist, after seven years of “possible MS.” Had a bout of double vision– eight weeks– and was referred to one by my regular opthamologist. This finally clinched my correct diagnosis, as a nerve associated with my left eye was inflamed upon examination (6th nerve palsy). Your symptoms sound like they could be MS. I hope you have luck with the eye doctor.
Let’s see…where do I begin…I am a 42 year old RN with a familiar history of various autoimmune disorders (my mom has myasthenia gravis, psoriatic arthritis and I have Crohn’s disease and psoriasis) and this is my dilemma…
On 3/18/2015 I had the gastric sleeve done and as of today I have lost 83 pounds (yes that is in 4 months). About 6 weeks ago, I started getting constant bilateral numbness in the inner part of my legs from my ankle to my thigh which then moves up on my abdomen like a girdle if I get tired or really hot. I believe I had an episode of a neurogenic bladder, although it passed and I eventually urinated. First the doctors thought I had an electrolyte imbalance, lab work was negative. I then was referred to a neurologist. He did an EMG on both of my legs and back showed nerve conduction issues. The neurologist then ordered an 3.5 hour MRI of my neck and spine…both came back “negative”. Now my neurologist is having me have a MRI of my brain and lumbar puncture. He also did an eye assessment and then referred me into a neuro-opthamologist. He diagnosed me with transverse myelitis. He hasn’t diagnosed me with MS…but I think that is what he is thinking…Opinions???
Karen— I think the lumbar puncture might give more definitive results. Doctors look for oligoclonal bands (proteins) in the spinal fluid, which indicate inflammation of the central nervous system and don’t appear in the fluid for much else. It’s definitely frustrating when there are no quick answers. It took me about seven years for a correct diagnosis. A vision problem, double vision, finally clinched it.
They think that the surgery and the extreme weight loss caused my immune system to go coocoo for cocoa puffs and started some massive inflammation process. Isn’t transverse myelitis like a precursor to MS? I am assuming that they saw something in my eyes that requires a neuro-opthamologist and want confirmation…what makes it worse I am a RN too boot
I think I was initially dx’d by someone as having transverse myelitis. Early on, and not an MS specialist (general neurologist who did not want to commit to an MS diagnosis).
That is what I read….TM (transverse myelitis) is a precursor to MS. I now seem to have numbness around my abdomen…like a girdle. I really appreciate talking to someone. As a RN, I know he thinks I have it and is testing me to confirm it. Wish I wasn’t a RN sometimes cuz it’s made me loose my naivity…
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