Aa
Is this MS?
40 year old female, I work as an attorney. 5 months ago, face went numb. Still numb to varying degrees. First MRI showed enhancing lesion. Had several follow ups and several evals, full bloodwork, 2nd MRI showed new enhancing lesion, extreme fatigue, blurry vision, face still numb, other random areas tingly and numb, evoked potential normal, lumbar puncture had protein at 74 but no bands. I have a lot of MS symptoms and had every test possible, went to Mayo, I have had many curbside consults with friends and clients who are physicians. 2 said they think MS, radiologist said MS and neurosurgeon who reviewed test results for me said I likely have MS. So much inference and allusion to having MS, oh you probably have MS, this looks like MS, probably MS in early stages of disease activity, so much runaround. One neuro wants to put me on copaxone and watch it with MRIs. Nobody will explain why CSF protein is 74 and why I have enhancing brain lesions, just telling me I probably have MS. So frustrating. Thoughts?
It sounds like you are being followed appropriately. MS is not an immediate diagnosis, however, because there are a number (along the lines of 300) of potential mimics. There are other conditions that show enhancing lesions (some in which lesions are ALWAYS enhancing) and have similar symptoms.
Being followed is the norm, and a clinically definite diagnosis can take from one year to years unless your lesions, LP, VEP etc. show textbook results. Because you had no oligoclonal banding in your LP, it does muddy the waters a bit, and is likely why no one is willing at this point to give you a definite diagnosis.
It could still be another condition.
No one here is a doctor and can really advise. I know that if my ms neuro had been willing to consider starting me on copaxone, I would have jumped (I had 6 or 7 relapses prior to dx). In order to do that, he is considering that you have clinically isolated syndrome (CIS).
BIG question though -- is this an ms specialist? If not, I would stick with the ms specialist's opinion and realize that is in YOUR best interest to have the correct diagnosis. The meds are not without significant risk, and a premature diagnosis of ms can mean something else, possibly more debilitating, will then be missed.
If I've missed speaking to your area of concern, please let me know :).
Being followed is the norm, and a clinically definite diagnosis can take from one year to years unless your lesions, LP, VEP etc. show textbook results. Because you had no oligoclonal banding in your LP, it does muddy the waters a bit, and is likely why no one is willing at this point to give you a definite diagnosis.
It could still be another condition.
No one here is a doctor and can really advise. I know that if my ms neuro had been willing to consider starting me on copaxone, I would have jumped (I had 6 or 7 relapses prior to dx). In order to do that, he is considering that you have clinically isolated syndrome (CIS).
BIG question though -- is this an ms specialist? If not, I would stick with the ms specialist's opinion and realize that is in YOUR best interest to have the correct diagnosis. The meds are not without significant risk, and a premature diagnosis of ms can mean something else, possibly more debilitating, will then be missed.
If I've missed speaking to your area of concern, please let me know :).
COMMUNITY LEADER
Hi and welcome,
If some brain lesions are enhancing with contrast, this 'basically' means the blood brain barrier has been breached and those lesions are currently still active demyelinating lesions, and because there are very few medical conditions that can cause demyelinating lesions, MS is the most common cause of demyelinating lesions in women in the 20-50 age group.
Still keeping it basic, with MS your immune system mistakes the Myelin sheeth as an invader and attacks what it shouldn't leaving a scar behind. Myelin is a sheath-like material that forms an insulating and protective coating around nerve fibres, Multiple Sclerosis literally means many scars.
2+ unique Obands are no longer required to be diagnosed with MS, LP results can be used as additional evidence that gets added to all the other suggestive/consistent diagnostic evidence though....with MS, LP results of 2+ unique Obands 'and or' mildly elevated Protein levels of 45-75 would typically be suggestive/consistent diagnostic evidence. Anything more information regarding your LP results is unfortunately beyond my pea brain's understanding sorry..
The earlier MS is diagnosed and disease modifying drugs started the better long term out come there is for the patient, MS is now able to be diagnosed with evidence of only 2 attacks but there is a lot of research recommending starting DMD's as early as the first attack, which is usually classified as Clinically Isolated Syndrome. MRI's with enhancing lesions and or without non enhancing lesions can be enough to meet the diagnostic criteria for MS today.
Disease modifying drugs (DMD) are typically recommended, MRI monitoring is not unusual because monitoring helps determine if that particular DMD is working to slow down and or stop further demyelinating attacks or if you need a different DMD
Hope that helps but if you have any other questions or need more information please don't hesitate to ask........JJ
If some brain lesions are enhancing with contrast, this 'basically' means the blood brain barrier has been breached and those lesions are currently still active demyelinating lesions, and because there are very few medical conditions that can cause demyelinating lesions, MS is the most common cause of demyelinating lesions in women in the 20-50 age group.
Still keeping it basic, with MS your immune system mistakes the Myelin sheeth as an invader and attacks what it shouldn't leaving a scar behind. Myelin is a sheath-like material that forms an insulating and protective coating around nerve fibres, Multiple Sclerosis literally means many scars.
2+ unique Obands are no longer required to be diagnosed with MS, LP results can be used as additional evidence that gets added to all the other suggestive/consistent diagnostic evidence though....with MS, LP results of 2+ unique Obands 'and or' mildly elevated Protein levels of 45-75 would typically be suggestive/consistent diagnostic evidence. Anything more information regarding your LP results is unfortunately beyond my pea brain's understanding sorry..
The earlier MS is diagnosed and disease modifying drugs started the better long term out come there is for the patient, MS is now able to be diagnosed with evidence of only 2 attacks but there is a lot of research recommending starting DMD's as early as the first attack, which is usually classified as Clinically Isolated Syndrome. MRI's with enhancing lesions and or without non enhancing lesions can be enough to meet the diagnostic criteria for MS today.
Disease modifying drugs (DMD) are typically recommended, MRI monitoring is not unusual because monitoring helps determine if that particular DMD is working to slow down and or stop further demyelinating attacks or if you need a different DMD
Hope that helps but if you have any other questions or need more information please don't hesitate to ask........JJ
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