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anyone experience head pressure,ears blocked,feeling dizzy & vision issues with MS?

Hi, I am new here. I started feeling "off" in the fall. I have had vertigo before and thought that this was another bout of that. It progressively got worse. No spinning. I just felt like my head was balloon attached to my body, severe head pressure like I was on top of Mt Everest, ears blocked. My ENT diagnosed me with Vestibular Migraine but sent me for an MRI. A neurologist said the MRI made he suspcious of MS. She said that she sees people with these types of symptoms that have MS. I just had an LP and am waiting for the results. My IgG index CSF is .89 which is flagged as high. Synthetic rate IgGCSF is plus 3.3.RBC CSF was 2 and flagged as High.I don't see a result yet for the OCB. I am just wondering if anyone on this forum has experienced these types of symptoms with their MS.
I am working with a Functional Medicine doctor that had me do eye and balance exercises. My eye issues (not tracking right, saccadic jumps) resolved completely.
Thanks.
4 Responses
987762 tn?1331027953
COMMUNITY LEADER
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
  Unilateral location
  Pulsating quality
  Moderate or severe intensity
  Aggravation by routine physical activity
Photophobia and phonophobia
Visual aura
E. Not better accounted for by another ICHD-3 diagnosis or by another vestibular disorder"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4833782/

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

  
1 Comments
Thanks for the info. The neurologist said that she suspected MS because of the pattern of white spots in my MRI. She said my physical exam was fine. I was very perplexed by the VM diagnosis because I have never had headaches much less migraine (although a book on migraine says that is not true) but went into menopause and my husband had a heart attack which the ENT thought could cause VM. I def don't fit into that criteria list for VM. The ENT gave me Nortriptyline for it & about 10 days later, the head pressure (& neck pain that many people have with VM) went away. With every step up of that med, I have gotten better. I still have some off days but most of the time, I feel pretty good compared to how I felt in Nov, Dec & Jan. My neuro doesn't have an answer for why my symptoms would go away on that med if it was MS.
I just checked & my CSF protein is 25 which seems to be in the OK range of 15-45.
My neuro told me that most of her MS patients have uneventful appointments with her. She said that medicine has come very far in the last 10 years. She said that the meds work well to keep the flare ups at bay. I have also found out that 2 people that I know have it & as long as they take their meds, they seem to be fine. But, then I come on here & what I am reading sounds much different that what she portrayed life with MS as. I am curious to know what you think of what she told me about MS.
Either way, I guess I'll know when the OCB results come through. She did say it was possible that everything would be negative & she would just watch me for a few years & help me try to get rid of the last bits of the VM.
Thanks again for responding!
987762 tn?1331027953
COMMUNITY LEADER
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  
987762 tn?1331027953
COMMUNITY LEADER
This came across my notice and i thought it might be of interest to you...

https://www.neurologylive.com/peer-exchange/multiple-sclerosis-management

pod casts about diagnosing MS etc might be worth watching :D

Cheers......JJ
3 Comments
Thank you! I saw the result of the OCB test come through yesterday & can see that I have 5 or more so that combined with the IgG index being high makes the MS diagnosis probable. Now, I just need the neuro to call me. I got the name of a good MS clinic from a friend who goes there & is happy with those doctors too. Now I just have to get rid of that awful pit in my stomach that I've had since yesterday & try to hold myself together.....
Just in case you are not aware, the Obands would need to be unique, so if for example there was 5 in the blood and 5 in the spinal fluid, they would actually cancel each other out and equal 0.

Also keep in mind that LP results are not the diagnostic hard evidence that would put a neurological condition like MS at the very top of your potential causes list, there are a lot of other conditions that also cause the same or similar results. Your brain and spinal MRI's along with your neurological clinical signs are more significant when diagnosing MS, any additional test evidence is really only additional evidence that points towards, or away....

I'm pleased to hear you've got the name of a good MS neuro for back up but please don't count your chickens before they're hatched cause it honestly might not turn out to be a neurological condition like MS IF your MRI evidence is not actually there.....one step at a time!

Breath.........JJ  
Hi, Thank you for that information. And, you were correct. My neuro called and said that the results of the LP were inconclusive. She said it wasn't enough & still could possibly be something else especially something that mimics MS. She said that my MRI still stands out to her because of the shape & location of the spots. She said that we could be catching the MS in it's infancy too. She had two suggestions: 1. I go for a 2nd opinion at an MS clinic nearby & 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. She will follow me closely to see if anything else comes up. I am still taking Nortriptyline for Vestibular Migraine & she wants me to stay on that. My symptoms have improved greatly but I am still not 100% & have off days. I am happy that the results came back this way but am still left sort of confused because we don't really have an answer yet. I have every single symptom of Vestibular Migraine but I don't fit the criteria for that either (history of migraine). Either way, I'm glad I found this community!
987762 tn?1331027953
COMMUNITY LEADER
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."

https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Clinically-Isolated-Syndrome-(CIS)/Treatments

"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."

https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

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!

HUGS.........JJ
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