initial diagnosis of ms, positive mri and optic neuritis, anyone with experience

[allela]

I am a 25 year old female(white ethnicity).  I started having vision problem in right eye 5 months ago, which became really bad with excercise.  Optometrist said i have afferent pupilary defect, and color desaturation.  I went to neurologist.  I have positive MRI, he showed me some spots of inflamation (inflammation), and said I have MS.  Recommeneds that I start treatment now instead of waiting for possible relapses.  Have apointment for next week.  I am confused and don't know what to do.  How can he diagnose me without other tests? And is it even worth doing other tests.  Do I know for sure if I will have relapses?  Will my eye ever get better, is there some tx for the eye problem.  Has anybody had simialar findings and not had any relpases?  And last question are there other conditions that can cause a positive MRI? thank you

[usan]

MS has different symptoms and different rates of progression in different ppl.

I'm not sure if you are taking steriods for the eye problem as they have been proven to make the eye better.

Take a second opinion if you want. Spine tap and evoked sensory potentials test will give out other areas of concern if it is MS for sure.

Six months back, when I underwent the shock of being dx'd with something with no cure (neuro says it is not MS still, I don't know that else it could be), I was also in the same state as you, confused and depressed.

Try to not get depressed and get along as much as possible.

[sultryskies]

You must of been stunned with such a quick diagnosis...I am 35 yr old female...had first symptom in '93...optic neuritis...treated for it and carried on living until last December when I woke up to a huge pupil...my right eye had no iris(?) left it was just a black pupil....long story short...many stupid DR's and smart ones and a clear mri later...I am still waiting for a diagnosis....but it may not be MS for me but I know in my body what it is and it is MS...An mri with lesions does indicate ms...but they usuallly want to see two more attacks....you may have more symtoms than you realize...i think over the past 12-13 yrs. and I have been ill for a long time....just thought I was old...but 35 is not old....About your eye...I lost color...had a black hole in the center of my vision, depth perception off...they gave me Iv steroids to take down the inflammation and told me I had a virus in my eye....WHATEVER!!!!..My eye can see...but it is not the same as my left...I see floaters...color spots....my pupil reacts differently in low light....I feel my eye vibrate back and forth...if you are not being treated with steroids (which is more common than being treated with them) you just have to wait out the course of the inflammation...If you are freaked about meds...tell your doctor you want info first...my friend has ms and has been on rebif...it is very expensive...they say it is a great ms treatment but she got very ill and took herself off of it and feels better...she says why would an attack be worse than feeling like **** everyday...you can also say you want to be treated as symptoms show up...I am on one med for spasticity and one for tremors...I know you say that you are okay except for the eye and such but it can change over night...it did with me and I was "lucky" that my friend had it...because I wasn't stunned by the possibilty...she ws like you...."I am fine then all of a sudden I am SICK"...if you have a DR. who is willing to help you...go with it and tell them your concerns....I think all the treatments are injections and that is another thing to keep in mind...I smoke marijuana...helps with energy and appetite...Canada is way moreliberal than the US...if that is where you are...but if you are going to try a man-made chemical drug...why not try a plant from mother nature....hmmmmm....something to think about...and it is good for glaucoma...so maybe it will help us...anyways I hope you feel a bit better and please know that you are not alone...you have every right to be scared and every right to decide what is best for you....it doesn't matter the name attached to the symptoms you have got...you live with what your body is and if you are okay now then take it for now and until you have to worry...take this time to learn about it...natural helpers for MS are omega 3 and omega 6's...vit b's especially b12 and flax seed oil...Good luck

[allela]

thank you guys for your responses
I'm not on any steroids, i don't know why the neuro didn't offer b/c from what i read i should be taking something for inflammation.  I also thought that optic neuritis resolves itself after 2-3 weeks, If it is ms.  I have had mine for 5 mnths.  An idiot doctor told me I had lazy eye when i went for a check up after the first month.  After this i don't know what doctor to trust.  But i will try for 2nd opinion at ucsf ms center. got no choice right.

[Annie62]

Allela,

There are other conditions that will cause lesions on a brain MRI but the doctor can usually tell by where the lesions are and what they look like whether they are MS lesions.  When you see your neurologist next week ask him how they know for sure it is MS and if they think further testing (visual evoked potentials for your apparent optic neuritis or lumbar puncture) would be necessary to definitively diagnose MS.  My cousin was dxd with MS in '97: it started with an opthamologist who dxd optic neuritis, sent her to a neurologist who did an MRI of her brain and dxd her with MS--a very quick dx like yours.  

You mentioned your vision gets worse with exercise.  It is common for vision to get worse in the eye that has/had optic neuritis as well a other MS symptoms to worsen with exercise due to getting overheated.  I have read that although optic neuritis can resolve in a few weeks it can also sometimes take months.  I had what I think (but don't know for sure) was optic neutitis back in '98 and will be underoing a further MS eval. in 3 weeks.  I never went to a doctor at that time, but I had blurred vision in my right eye along with a dimming of my vision in that eye, and it lasted for at least six months.  In fact, 8 years later I still have minimally blurred vision when I walk/work in yard and can still see a slight difference in the color of things when I close one eye and then the other.  

Regarding treatment, the MS drugs are supposed to help prevent formation of new lesions and slow down progression of the disease.  Most people dxd are dxd with relapsing-remitting MS, meaning you have flares and remissions, especially for the first several years of the disease. Usually this turns into a more chronically progressive form (without flare-ups and remissions)years down the road.  From what I have read the drug Copaxone has fewer side effects and is better tolerated than the other class of drugs (Avonex, Rebif, Betaseron), but which one you go on (if you chose to do so) will depend on your doctor, your insurance company (hopefully you have insurance), and your tolerance of the drug.  Also, as sultryskies mentioned, there have been some studies done on omega-3 and omega-6 (found in sunflower oil, safflower oil, soya oil, flaxseed oil (you can buy the capsules or get actual flax seeds from a whole foods store and sprinkle them on your food), as well as primrose oil tablets (OTC) that have found these might be helpful in preventing lesions (something to do with linolenic acid in these oils, I believe).  Since these oils are healthy and can't hurt, I would consider using them, but I wouldn't let them take the place of the MS drugs if you are able to afford and tolerate one of them.  Best of luck to you.  

[Annie62]

Also thought I would add that it is important to try to avoid getting colds/infections.  MS is an autoimmune disease and since something is out of whack/awry with the immune system (it mistakenly attacks your myelin) sometimes infections can trigger off new symptoms or exacerbate pre-existing ones.  This is true of other autoimmune diseases as well.

[allela]

thank you annie62

[mineandours]

Check into neurological Lyme disease. I was a "probably MS" diagnosee and I also had brain lesions. The symtpoms can be very similar--almost identical.  I ended up having Lyme.  See www.LymeNet.org for more info. Here's a symptoms list.

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain

Neurological System
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Sudden jerking of fingers or entire limbs
Pain in spinal column

General Well-being
Unexplained weight gain, loss
Extreme fatigue
Swollen glands
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.  (If it was mild, you may not even recall this.)

Eyes/Vision
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Flashing lights
Optic neuritis

Ears/Hearing
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Constipation
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Heart blockage

Psychological well-being
Mood swings, irritability, rage
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ – sudden onset, jaw spasms
Sore throat, hoarseness
Loss of sense of taste
Difficulty swallowing, throat spasms

Females only:
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge

Males only:
Testicular or pelvic pain

LYME FACTS
1. You do not have to recall a bite or have gotten the target rash to have Lyme disease. Less than 50% of people with Lyme do.
2. The tick that carries Lyme is as small as the period at the end of this sentence and their nymphs are nearly microscopic.  Ticks are on the move at 35º and above. It’s a year-round problem.
3. You do not have to experience ALL of these symptoms to have Lyme disease.  It is also typical for many of these symptoms to come and go or occur once and never occur again.
4. It is possible to have Lyme disease and have a negative test result.  After Lyme bacteria enters your system, it tricks your immune system into no longer producing antibodies to fight it, hence, a negative test result. There are also other numerous factors that can affect the results.
5. Lyme bacteria hide in the spinal fluid, bone, tendons, muscle and nerve fibers and tissues and in many cases are not “floating” around in the bloodstream where they can be picked up on a test. It is a cousin to the syphilis bacteria and very difficult to eradicate.
6. It takes a LYME SPECIALIST to diagnose, test for and treat Lyme disease and any of its associated co-infections. To find one go to www.LymeNet.org.
or www.ilads.org.  Lyme specialists do not require a referral.  

NOTE: Everyone may have symptoms that appear on this list; however, it does not mean he/she has Lyme disease.  If one has numerous symptoms on this list and no other explanation for them, consider Lyme.

[allela]

thank you for your comment
I have contacted an llmd, but the appointment is not until three months from now. so frustrating.

[kimmy1115]

Hello
My mother recently had a terrible migrane headache.  She thought she had a sever sinus infection.  She took an antibotic (antibiotic) treainng the sinus infection.  The next day she woke up with double vision.  She literally sees double.  She had waken up with a lazy eye, and her eyes were perfectly alligned the night before.  She was rushed to the emergency room, and underwent a CAT scan.  There was no signs of masses in her body/head.  The doctor told her to put a patch over her eye for 3-4 weeks until she sees him again.  Everyone whom we have talked to has never heard of this condition beofre.  We do not want to wait too long in case there are other severe conditions.  What could have caused a lazy eye over night?  It has been several days since.  She feels fine, but has a lazy eye and sees double.  Does anyone have any advice or information?

Thanks

[CARLA101]

I have been reading the stories on this forum, and until tonight never realized that I'm not the only person going through this nightmare!  almost two years ago I was standing in the store and all of a sudden I couldn't tell what the prices said on the chicken I was getting. I could see but it was like I couldn't figure out what it said, kind of felt confused. I got scared and left the store and started driving home and It seemed as if the sky was clashing with the road, contrast difficulty. over the next week I started to have other symtoms. Distorted vision,everything looked wider,straight things looked curved,peoples faces looked wider on one side. their eyes looked out of line with eachother. then light sensitivity, at first mild and after a week sevier. flashing flickering lights and finally total intolerance to any light inside or outside. sevier downward spiraling depression and suicidal thoughts.sevier anxiety. also vomiting,diareah, anorexia and rapid wieght loss. I lost 40 punds in three weeks. I have had clinical depression for 13 years prior to this, and have been on zoloft for that long. my primary doctor had recently added one .25 xanax at bedtime as I was waking up with panic attacks in my sleep. She sent me to a clinic to start letting them write my percriptions for these conditions since they had gotten a recent policy about controlled substances like xanax. Anyway this doctor decided that my zoloft must not be working anymore eventhough I told him I had not  had any deppresion in 10 years. He said It should take care of panic attacks too. so he decides to change my Zoloft to paroxetine(generic paxil), and did so without tappering me off the Zoloft. Just switched it the   next day. and also jerks me off the xanax without a tapper as well. Six weeks after this change I had this attack.I called this doctor as I suspected the med change and he said it was unheard of six weeks into the paxil, and raised the dose. I never made it to fill the new dose. I ended up In two major ER's trying to get some help. I came there with vision loss/disturbance and confusion and they had a police officer hand cuff me and take me to a phyciatric hospital in a police car, and tried to comit me against my will. THankfully the doctor there realized that I was'nt crazy and that my meds were messed up and let  me sign myself in.  anyway six eye doctors later and me keeping on saying I could"t see eventhough they said I had 20/20/ vision I asked them to do a visual field test. Even the opthalmologist actually accused me of making up my symtoms, but quickly changed his attitude when the visual field test showed a big blind spot on the left inferior quadrant. He  then finally sent me to a neurologist who done an MRI that showed multiple white matter lesions on my brain. He immediatley diagnosed me with MS and sent me out of his office with a case of rebiff.  THis doctor had not even taken a blood test. over these eight months I had been researching on the internet and found that there are other test that need to be done, so I got another opinion and this neurologist done bloodtest, a spinal tap, a polyomerce chain reaction to look for viruses and other causes, all of which were negative. and I didn't have the oblongital banding which is  caraceristic in about 98% of ms patients. So my neuro said that there was somerthing cwirky with me and I did't show all the signs of MS. He said I might have had something called ADEM. which is almost identical to MS except it is a monophasic illness(one time attack). He has been giving me MRI'S for the last year and a half I've had (4 scans in all) All of which have showed no new lesions and no enhancement. I have had no more attacks and in April 2008 It will be two years since my origional attack. I did't get any steriods because by the time they finally tealized that I wasn't making it up I had aready suffered through the accute stage and eight months past it.  During this period I had pressure and pain behind my eyes and in my head,sevier vertigo,confussion,blurred vision, color washout of vision, vibrating in my ears and head, a stiff neck,shooting leg pain, back pain, right- left confussion,disoriented, mood swings,dry eye syndrome,blepharitis(inflammation of the e ye lids nerve twitches in my face and eyes, numbness in eyes and forehead and scalp, tenderness in sides of head and scalp, tingling in lower back of lower legs, loss of strength down right side of body , all of which have slowley gotten better over the last two years, but are not completely gone. visual field has remained on visual field test, but seems to be shrinking as far as how much I can see. It  went from the entire visual field being affected to where I saw half of everything and now is in a wedge shape at the bottom right of my field of vision. After six eye doctors, two neuro doctors,a neuro othalmologist, a hearing doctor they still don't know what my diagnois is or what caused this attack. they all denie that the medication or change without tappering after being on Zoloft for 13 years had anything to do with it, because as they say it has never been documented in the litiature. Even though everything I had except for the brain lesion are listed on paxil side effects. I had a heart surgery at 18 months old and had to be on breathing machine for 24 hours during the su rgery which they admitted could have caused the lesions on my brain. But they can't say thats where they came from because they can't explain the attack I had. If anyone can help me out there please call me at (865-973 -1985 or write me a comment. sorry this was so long but it is alot to write about. If I can help anyone else please feel free to call me as I have a lot of info on this since I have been studing it for two years now. Carla