Hi and welcome,
Migraine has been acknowledged as the most common misdiagnosis in early stages of relapsing remitting multiple sclerosis (RRMS) and clinical isolated syndrome (CIS) but from my understanding a migraine misdex has happened because there wasn't MRI's studies, or the MRI's were normal, or the white matter hyperintensities (WMH) were located in the frontal lobe, limbic system, and or parietal lobe which is typically more suggestive-consistent of migraine than it is MS.
"Vestibular migraine diagnostic criteria [8, 9]
A. At least five episodes fulfilling criteria C and D
B. A current or past history of migraine without aura or migraine with aura
C. Vestibular symptoms of moderate or severe intensity, lasting 5 min to 72 h
D. At least 50 % of episodes are associated with at least one of the following three migrainous features
Headache with at least two of the following four characteristics
Moderate or severe intensity
Aggravation by routine physical activity
Photophobia and phonophobia
E. Not better accounted for by another ICHD-3 diagnosis or by another vestibular disorder"
Symptom wise there isn't anything specific enough that would place MS at the top of your possible causes list, which is a common issue with symptoms.....MS is a condition that affects the central nervous system which means just about every MS symptom is also associated with many other conditions.
Some types of migraines can definitely mimic MS, the types of symptoms caused by infection or inflammation of the inner ear, which contains the vestibular system (balance) and the cochlear (hearing) can also mimic but whilst symptoms can be the same or similar, there are differences which are more rare for MS, ie auditory issues, pressure type head pain etc keep in mind though that rare and uncommon symptoms don't mean it could never ever happen in pwMS, but there's a higher potential of it being caused by an alternative condition, it's a secondary issue or it's just a less common issue....
Your diagnostic evidence is going to be vital in working out what conditions do cause the objective diagnostic evidence you have, as well as all the symptoms you've experienced and the way it presented etc.....you don't mention what your neurologist found on your brain MRI that made her suspicious of MS but it's more likely to do with lesion location(s) which could be more suggestive-consistent with a neurological condition like MS and less suggestive-consistent with migraine etc.
The LP is not exclusive but it is very useful additional diagnostic evidence that can add weight towards or away from potential conditions, you don't have all your LP results back yet but what you have so far from my understanding [which is limited when it comes to alternative conditions for LP results] wouldn't actually be pointing towards or specifically away from MS as a potential cause but it definitely would point away from migraine as your diagnosis. To explain....
"RBC CSF was 2 and flagged as High" Normally no red blood cells are present in the CSF, red blood cells may indicate bleeding into the CSF or may just indicate a traumatic tap ie blood that leaked into the CSF sample during collection.
"My IgG index CSF is .89 which is flagged as high." IgG index is positive (elevated) in approximately 80% of patients with multiple sclerosis (MS)
When CSF IgG index shows higher than normal levels, MS is one potential cause but there are others eg lupus, rheumatoid arthritis, chronic infections, hepatitis etc etc
CSF protein is another indicator typically informative because only a small amount is normally present in the CSF, proteins are the large molecules and do not cross the blood/brain barrier easily. Around 50% of multiple sclerosis patients have elevated CSF protein levels but increases in protein are also most commonly seen in alternative conditions too eg Meningitis, brain abscess
brain or spinal cord tumours, Guillain-Barré syndrome
and even Syphilis but there are probably a few others i'm unaware of too.
[Also approximately 75% of pwMS have increased gamma globulins]
Vestibular issues also cause visual issues, i'm not up on exactly what they are but this pdf from the vestibular disorder association may help explain them better than i could; https://vestibular.org/sites/default/files/page_files/Vision%20Challenges.pdf
Hope that helps and not confuse you too much......JJ
Your very welcome :D
MS disease modifying drugs have come a very long way in the last 10 years so that at least is very true, they still haven't found the cure yet but there are a lot more choices of both injectible and oral DMD's, there's also a lot more symptom relief options that have become available in that time frame too.
People dx-ed with RRMS today have a completely different future than what it use to be before DMD's were developed, DMD's help reduce relapses and slow down the disease, which in turn helps lower disability rates but DMD's don't help everyone though and as i said before, there is no cure for MS so don't believe any 'cure' story you read or hear about...
It's not uncommon for someone with MS to be told 'but you look so good' or 'but you don't look disabled' or something similar and that's simply because most of the issues MSers experience show no external signs so their MS is not as obvious as those dealing with issues that do
eg balance, gait, speech etc
Due to how unpredictable the size and which locations the MS lesions can develop in the brain and or spinal cord, like snow flakes no two pwMS experience the exact same combination of symptoms, so you'll find that whilst all the specific MS symptom topics being discussed might appear to be a lot for an individual to deal with, because of the way MS lesion damage works it's basically impossible to experience every single symptom that is associated with MS.
"My neuro told me that most of her MS patients have uneventful appointments with her."
I honestly don't typically take much stock in these types of statements made by Dr's, they're often not factually accurate or even specifically meaningful to patients unique circumstances, but if i had to guess i'd say it was said to either reassure you or herself.....technically normal neurological clinical signs doesn't exclude the possibility of MS but it's quite likely MS wouldn't of been on anyone's radar without something showing up on your MRI that wasn't consistent with your dx of Vestibular Migraine.
To be brutally frank, like many fields of medicine neurologists specialise, some know more than others but not all neurologists know enough about MS to accurately diagnose and or treat because they just haven't seen enough MS patients, or have had enough MS experience throughout their career and or they're not as up to date about everything MS related as an MS specialist needs to be.
The Mcdonald diagnostic criteria has evolved over the years so that MS can now be diagnosed a lot earlier than it ever use to be, i think the latest version was in 2017 and theoretically patients can be diagnosed from what shows up on just one MRI. This one is the easiest to understand https://www.mstrust.org.uk/a-z/mcdonald-criteria
Basically, if the objective MRI evidence a patient has is already enough to meet the Mcdonald criteria then no additional evidence is actually necessary, but if there isn't enough then additional evidence like 2+ unique Obands from your LP or another MRI showing new lesions would be required.
Up to 90% of pwMS will also have Obands but regardless of those stats the LP results can only add weight towards an MS dx, they can't be used to rule out MS IF the patients brain and spinal MRI's are suggestive-consistent with MS....."wait and see" is what happens when there isn't enough evidence to diagnose, unfortunately 'wait and see' can also happen when for what ever reason, the neuro isn't 100% sure.
On the one hand you don't want a neuro who's too quick to dx and misdiagnose but on the other, you don't want a neuro who doesn't know enough about MS to dx or one that won't diagnose until there is a truck load of abnormal clinical signs and MS specific diagnostic evidence.
I suppose what i'm trying to say, though badly, is that it's always going to be in your best interest to get a second opinion with a neurologist that specialises in MS regardless of if this neurologist diagnoses you with MS or not. Getting the opinion of a specialist neuro who's sole focus is on MS will give you more confidence that an MS dx is correct 'or' there is a legitimate reason for you not to be diagnosed with MS 'and or' that to wait and see is the right decision for you.
:D still hope it helps.......JJ
This came across my notice and i thought it might be of interest to you...
pod casts about diagnosing MS etc might be worth watching :D
I'm glad you found us too :D
"She said that we could be catching the MS in it's infancy too. She had two suggestions:... 2. I start an MS drug to prevent any further episodes. She said that a generic of Copaxone came out & that she would suggest that."
What she's referring too is what i mentioned before, Clinical Isolated Syndrome (CIS) which is technically only a single demyelinating lesion (monofocal) or more than one lesion (multifocal) in the one location so in other words MRI evidence of just one MS attack.....to be prescribe any of the disease modifying drugs (DMD's) you absolutely must be diagnosed with one of the approved types of MS for any of the various DMD options to get through insurance and or government regulations!
"Many episodes of CIS are mild and resolve without treatment. In other cases, treatment with high dose oral or intravenous methylprednisolone (a steroid) is typically recommended.
An MS disease-modifying therapy is often recommended for people diagnosed with CIS that is considered likely to progress to clinically definite MS (CDMS), with the goal of delaying a second attack.
Several large-scale clinical trials have been conducted to determine whether early treatment following a CIS can delay the second clinical event, and therefore the diagnosis of CDMS. Based on the results of these studies, the U.S. Food & Drug Administration (FDA) has expanded the indication of several medications used to treat MS to include individuals who have experienced a first clinical episode and have MRI findings consistent with MS. The results of these trials, and the FDA’s approval of expanded labeling for certain medications used to treat MS, support the earliest possible treatment for MS, which many believe may delay the development of permanent clinical disabilities.
At this time, it is difficult to predict the future course a person who is diagnosed with a CIS will experience."
"Can treatment delay onset of MS in people at high risk?
Research has shown that early treatment of clinically isolated syndrome with disease modifying drugs such as the beta interferons (Avonex, Rebif, Betaferon, Extavia) and glatiramer acetate (Copaxone) can delay conversion to MS in people at high risk.
These drugs are available for prescription on the NHS in England and Wales for MS. The 2015 Association of British Neurologists (ABN) prescribing guidelines state that neurologists may consider the use of beta interferon or glatiramer acetate for people within 12 months of a clinically isolated syndrome when MRI evidence predicts a high likelihood of recurrent episodes.
More recent studies suggest that teriflunomide (Aubagio) shows similar results."
This is very slightly out of date, published in 2016, but it has every research done on 'Glatiramer Acetate' up until that time frame, note it may be more information than you would ever wish but at least you have the option of reading it.....http://www.msdiscovery.org/research-resources/drug-pipeline/332-glatiramer-acetate
There are two newish Generic forms of Copaxone (Glatiramer Acetate) that i'm slightly aware of, might be 1 or 2 others by now. Copaxone has been around for nearly 20 years already but the generic are only about 4-5yrs, with the generic versions one requires daily injections @ 20mg and the other one requires 3 injections @ 40mg, so 3 times a week instead of every day.
There are oral DMD's now, whether or not any have been specifically approved for CIS i'm not very sure of but it would definitely be worth discussing or looking into...
"1. I go for a 2nd opinion at an MS clinic nearby"
It would seriously be in your best interest to either get a second opinion at the MS clinic this neuro is thinking of or with the MS specialist neuro your friend recommended to you but no matter who you get a second opinion from, make sure they are an MS specialist and that you get a second opinion on whether or not what your dealing with is CIS, early stage RRMS or something completely different!