Is it really MS?

[tlatino]

I'm hoping to get some feedback about my condition.  I am a 36 year old woman who was diagnosed with MS 3 years ago.  It started with really bad headaches on the right side of my head.  Then one morning I woke up and thought I had a stroke, the right side of my face was droopy and I didn't have control of the muscles.  I also slurred my speech and drooled.  I'm right handed and was unable to write normally.  I went to my Dr and he ordered an MRI.  At first I was told it was a brain tumor then after a neurologist saw the films I was told it was MS.  All my symptoms were gone within 2-3 weeks.  All my test (except the MRI) have come back normal.  I started on an MS drug 2 years ago and about a year & 1/2 ago my left knee started bothering me.  It swells and the temperature is much colder than the left leg.  I'm told it's not from MS.  I also sleep about 16-18 hours a day and was also told it's not from the MS.  This is my question...If all my tests are normal and I have no symptoms of MS, then what else could it be?  My MRIs have no changes in 3 years.  Could I have plaque or scarring on the brain from something else?  Maybe from migraines or my sinusitis?  I felt fine until I started the MS drug!
Also, before the storke-like episode I had abused my body with diet pills, laxatives and starvation.  Could this be part of it?

[threeboyz]

I am 38 yr old female just dx April 2005. woke one morning with both legs numb and tingling from the top to my feet, feet felt cold. mri showed three leisons on my brain and one on spine leg numbness last about 2 1/2 months before slowly started to go away
middle section tight feeling(ms hug they say)which is still there, not on injections as of yet,balance off some days but optic end of things well   testing for hughs syndrome as 15 yrs previos had blood clot in right leg. does anyone know if hughs shows on an mri? doing pretty well small things like electric shocks now and then stiff legs exhausted, feeling the best when taking a whack  of  supplements reccomended for people with ms and low fat diet
docs known to misdx hoping this is the case but not likely blood pressure constantly low, had feeling in head of everything racing later that day legs and feet tingling again  all these small things never seem to last more then a few hrs  any opinions ??

[kara_with_ms]

It could be or it might not be,I had the same exacerbation that led into a year of seeking a diagnosis which by the time I was diagnosed, it was progressive. In that time I could have been taking the injections, but because the neurologist I was seing refused to diagnose it on MRI alone, did more harm than good. what many neurologistss do not tell you, is that there is evidence of active MS without any lesion activity, and there is lesion activity with no physical symptoms. It is a mystery how it really functions, how the medicine actually works and who gets it and who does not. But the conventional wisdom is that they only have this criteria to go on when diagnosing MS. I have had three neurologists, two who agree and one who does not. I have had 4 sets of positive MRIs, two sets of Evoked Potentials, lumbar puncture and 10 blood tests. I was in a wheelchair, while the first neurologist held to his claim that I was suffering from panic attacks. He had 4 MRI results that stated there was clinical diagnosis of progressive MS and still maintained that I was faking a mild case for attention. The next neurologist determined that I do indeed have secondary progressive and had me on a wonderful medicine that worked. This neurologist I have now has put me on another medicine that I start next week. Seems odd to me that someone who is faking should be willing to take shots every night for years and go through the rigors of physical therapy if they don't really need to. And not to mention all the money spent for co-pays.  Just make sure when you go see a neurologist, ask as many questions as you can, make him talk to you, after all, it is your health. Don't be afraid to disagree if you feel he is wrong. When you find the right neurologist for you, keep open communication with him.

[Sharob]

Talk with you insurance company and see if you can get a "THIRD" opinion.  

I'm not a doctor by no means, but my husband is recently back on seizure meds because he had a seizure in April...10 years seizure free :{ / five years no medication.  The side effects of medication is an illness all in itself.

Three months ago I went to the dr. for tingling in rgt hand and foot.  Dr. first diagnosed stress (which could have been husband was undergoing seizure study at Mass Gen. Hopsital).  Returned to dr. one month later w/ same symptoms - dr. ordered MRI to rule out MS.  Had the MRI was abnormal which lead to an angiogram - I was told by the angiogram dr. it was a small tumor in my front parietal lobe.  I went for a second opinion at Mass Gen. Hosptial and it is NOT a TUMOR it is a cavernous malformation.  Please have dr. rule this out for you...CM can cause strokes.  I hope this helps.  I say get another opinion.

[CCF-Neuro-M.D.-PW]

MS is diagnosed on the basis of dissemination of lesions in space and time - this means that you could have one clinical episode like you describe, but you would have to have other evidence of older lesions like on MRI or evoked potentials for a diagnosis of MS - Idon't know if this was the case with your MRI. Otherwise if there is evidence of just one demyelinating episode it is not MS and is rather termed acute demyelinating encephalomyelitis (ADEM). A percentage go on to develop other episodes and hence MS, but some people do not, and do not develop MS.

Swelling of the knee does not seem like a typical manifestation of MS unless there was some assocaited leg spasticity or weakness. Msny people particularly with early MS have no symptoms between attacks, although we have evidence from research studies that there are subclinical or silent attacks based on the amount of MS lesions on the MRI. So the MRI having no changes in 3 years is a bit unusual for MS.

Migraine could fit the description but is not usually associated with a 'tumor-like' MRI lesion. Sinusitis can in severe cases lead to a brain abcess but these are usually easilt differentiated from other things on the MRI.

MS is commonly associated with fatigue, and this symptoms is treatable with different therapies and medications - you need to ask your neurologist about this

Your issues with body weight before the stroke episode may have contributed ie dehydration precipitating a stroke, I don't really know. Obviously avoiding those things is better for your health.

My advice is limited to educational advice only and cannot substitute for a formal opinion
Good luck

[jan]

Hi,

I had something def. neurological happen twice and it has def. left it's mark.  I had an MRI that showed 3 lesions in an area that made MS suspect and I was told I def. have MS.  Well, I didn't get any new lesions in 6 yrs. and although I have a abnormal neuro exam I am told I do not have MS.  It's often a tough diagnosis.

Anyway, the reason I am writing is that I thought you might like to check this Yahoo support group for MS:

http://health.groups.yahoo.com/group/FriendsWithMS/

They're very friendly there and you can compare notes, and get support.

[tlatino]

Thanks for the info.  I would love to find someone to talk to that is or has experienced the same thing.

[tlatino]

Thanks for answering.  I talked to my neurologist about not taking the medicine but he doesn't want me to stop.  He's afraid something irreversable will happen.  I got a second opinion, maybe I'm riding a little on denial, but all he did was look at the MRIs I brought.  Is it really that cut and dry?  I was tested for Lyme and that was negative.  I also went for a spinal tap but that was a nightmare.  They never made it to the sac to get fluid and spent to much time trying so they stopped and I was told after it wasn't neccesary because of the MRI.  My neurologist is the head of the MS clinic where I live.  So maybe I am just thinking too much and it is MS.  But after reading many things from people with MS it just makes me wonder because what they talk about happening to them never happened to me.  

[vega1318]

If the medication you're taking is not helping you (it is hard to say, because you don't seem to have any relapses of MS and that's all the medication would normally do), but you think it may be causing problems -- perhaps, talk to your neurologist about temporarily stopping it?  There's no harm in it, especially if there's a question about the diagnosis in the first place.  
You should go to an MS specialist and have a second opinion about your MRI.  
Have you been tested for Lyme?  Have you had a spinal tap?  Your initial symptoms sound somewhat like a Bell's palsy which may be unrelated to what's in your brain.  

I think a second opinion is in order.