I am So Confused, is it MS or not

Hi all

I am new to this site, and wondered if anyone can help ease my mind a little

Back in march this year I had an episode where i was eating dinner and my sight started to blur then i lost my sight completely, this lasted what felt like a long time but was probably only minutes, no headaches no warning,

then about a month later this happened again, and when i stood up it felt like my body was pulling to the right, and i was so dizzy i had to sit down real quick again before i fell on my butt,

two weeks later i was driving home from work and my sight started blurring then my sight went completely again thank goodness i got to the hard shoulder before i could cause an accident,

then i thought there has to be something wrong here so I went to my primary doctor who examined me and could hear whooping in my carotid artery, so send me to a cardiologist, the cardiologist did every test in the book, and i do have blockage in both carotids, but both under 50%, my heart was fine etc etc,

but he wanted me to go see a neurologist, the first one i saw, told me it sounded like i had TIA's and did a brain scan, and MRI and MRI, both were fine he said, he then send me for a tilt table test, which was positive and also a VNG which was also positive, the VNG stated the problem was more than likely central,

well about a week later my balance started to go, i would be walking like i was drunk, and my head was spinning,
they sent me to physical therapy which was not helping at all, and they put me on Meclizine for the dizziness, all that did was make me feel like i had the worst head cold,
the Therapist actually witnessed one of the worst attacks i had ever had and immediately send me back to see the neurologist and i was referred to the nurse practitioner who never even bothered to examine me and basically told me she would triple the doze of meclizine and i should carry on with the physical therapy, despite the fact my husband had to guide me into the room, as i could not walk straight, she basically said take the pills or the therapy i don't really care what you choose to do, needless to say i found another neurologist


well this new Neurologist was very concerned about my symptoms, tingling in my limbs, severe pain shooting down my spine when asked to bend my head forward, my very slow unbalanced walking, nearly falling over when asked to stand with my eyes closed, and i could not feel anything when he pushed my toes up, but i could feel it when he pushed my toes down

he immediately ordered a MRI of the brain and also one of my neck and spine, and also ordered a spinal tap
the MRI came back and my whole brain is covered in white matter spots, but they did not go brighter with contrast dye as they should have with MS
he also said these white spots occur in people who smoke, are diabetic  old age, well I do not smoke, do not have diabetes and i am only 54
the MRI on my spine showed i had bulging and arthritis which he has not fully explained yet, I get the results of the Spinal tap this Wednesday

My symptoms are steadily getting worse, my walking some days is terrible, and i work full time and it can get pretty embarrassing talking to customers and suddenly forgetting what i am saying or start slurring some of my words, or going to so off balance,

He tested for a Compression of the brain stem and also tumors, which were not present, he has now also referred me to an MS specialist, i have not received the appointment yet, probably waiting for the insurance company to approve it,

I would like to know if anyone has had symptoms similar, and was it indicative of MS
as this is what he did the spinal tap for,

I have always been a healthy very active person, and these symptoms are devastating to me, does anyone know when they do a spinal tap are they just looking for MS or all diseases that cause my kind of symptoms,

I am sorry my post is so long, but i am making my symptoms worse, just with the stress of not knowing, what is wrong with me,

can anyone tell me what may be wrong as Wednesday seems like an eternity to wait for the spinal tap results

thank you

[Joe79]

Hello and welcome!  Sorry to hear that you are having problems.  It sounds like they are actively looking and searching for the problem and are ordering all the test.  So that is good.  The spinal tap is a hard one to explain and I really don't quite know it.  It is not testing for MS, it test for different levels of things and O-bands that can indicate MS, although a negative result doesn't rule out MS.  It shows if there is inflammation your CNS.

One thing, the contrast will only brighten a lesion if it is currently active, it doesn't take long for it to scar and appear as an "old" lesion on an MRI.  There is a good resource up at the upper right hand side of the page called Health Pages that can answer a lot for you.  Take care.

[Udkas]

Hi and welcome to the MS Forum. I think Joe has given you some good information and the Health pages can answer many of your questions about the LP and MRI etc.

I think that it is great that you are having all these tests done and hopefully the MS Specialist can give you some answers as your symptoms sound frightening.

Have you been to see an ophalmologist (sorry can't spell it), eye specialist, I think with your loss of vision this would be very important, if you don't have an appointment to see one can you get one.

Joe is correct only the active lesions on MRI light up, so if your lesions have not lit up this does not rule out MS.  You can have lesions on MRI and they can not be because of MS.  Really it depends on the shape, size, position etc., migraines can cause lesions on MRI, Stroke etc. etc., so only an experienced neurologist or radiologist could diagnose and if you are not happy with their answer you can always get a second opinion from another radiologist, neurologist.

As Joe said spinal taps can rule in MS but if your tap is negative it does not mean that you don't have MS.  Spinal tap can show inflammation and can also help in diagnosing other diseases too.

Was your cervical MRI normal? Tingling when you tilt your head forward is very indicative of a cervical lesion?  

Best wishes with your results, keep us posted.  This site is excellent for advice and support if you have a diagnosis or even if you are a limbo lander searching for a diagnosis. Many of your symptoms sound like MS but there are many mimics out there with similar symptoms and it would depend on how long your symptoms last, if you have clear episodes of attacks etc. etc.  I do hope you get some answers but you sound like your doctor is being very active with your testing.

Good luck,
Udkas.

[Quixotic1]

Hi, and Welcome to the forum.  I have to admit that the first part that you told us did not sound like MS, and did sound more like TIAs or somehting else.  The symptoms of MS are much more persistent and last (either constantly or frequently recurring) more than 24 hours.  Some experts want to see them last for 48 hours or more.  Fading of the vision and dizziness are frequent TIA symptoms.

Then with the tilt table test and the VNG suggesting a central cause to your dizziness it did begin to sound like a neurological problem.  When you bend your neck and have pain, this could be from impingement, but also sounds like a symptoms common to MS called L'Hermitte's, which is caused from an MS lesion in the cervical spine.

Your MRI of the brain is the most troubling.  "Covered in white lesions" does not suggest the common causes of diabetes, smoking, high blood pressure or old age (at 54), altough this depends on the size of most of those lesions (spots).  If they were all tiny - just a couple of millimeters - then one would have to consider other things along with MS or any of the other MS mimics.

Did the neurologist send a bunch of blood tests?  If so, these were to rule out many of the diseases which mimic MS.

Now, somewhere you got the mistaken idea that the lesions on the MRI need to enhance with the contrast if they are due to MS.  This is wrong.  Lesions enhance only in the first few weeks that they are being formed or when they enlarge.  Enhancement certainly is a pointer toward MS, but most MS MRIs do not catch the lesions during the short time that they enhance.

I'm glad you are being referred to an MS Specialist.  Don't let anyone tell you that you are too old to have/develop MS.  Although MS appearing over the age of 50 is unusual, it is not any reason to stop considering it.  MS has been diagnosed to appear as young as 18 months and well into the 70's.  My first symptom of MS was when I was 52.

I'm sorry this is wreaking such havoc on your life.  I wouldn't wish what you are going through on anyone.  It sounds like you have been developing more and more symptoms since the whole things began.  Is this right?

The specialist will have to put together all of your symptoms, all of the test data, and do a VERY THOROUGH neuro exam.  After the mimics have been ruled out - and this is a critical thing to do! - (s)he may be able to talk to you about what may be going on.  As of yet, it is not totally clear.  And, of course, nothing can be diagnosed online.

Something else you may want to be considering is whether you can work with what is going on.  Whether or not you tell your employer may depend on whether your hob performance is suffering and how large your  employer is.  We have people fairly knowledgeable in both of these fields and some good info in the "Health Pages" which can be located in the upper right corner right under the "Discussions" link.

I hope you stay with us and let us know what the specialist says.

Quix

[ShockedToday]

Everyone has given such great answers to you.  I just wanted to tell you hello and to say that I'll be praying that you get some answers soon.

[tyler175]

Hi Everyone

Thanks so much for all of your replies, It is heartening to see so many people care enough to reply,

these severe imbalance problems started about 3 months ago and have gradually gotten worse, in fact all of the symptoms have gradually gotten worse with no break what so ever from them, the only one that has become intermittent, is the vision problem, i have not had that now for about 2 months,

though a new one has started and it is so weird, that even i don't know how to explain it, i am laying in bed, and all of a sudden there is a noise that shoots through my head like an electrical charge, lasting just seconds, i don't know if it is in my head or coming from somewhere else, it is so weird, and scary

then of course the cramps in my left leg and foot every night without fail are gradually getting worse,that drives me crazy, as i then get deprived of sleep, which makes me all grumpy the next day,

Yes i had blood tests done, they also checked for vitamin B-12 and Thyroid deficiency as i have a really severe intolerance to heat or cold, which i have never had before
they also did a blood test just before the spinal tap,

the Neurologist said that i had some bulging of the spine or something and also athiritis, but it was nothing to worry about yet, I need to ask him what he meant by
that

I have not seen the images of my MRI but no doubt the neurologist will give me a copy, though lord knows i would have no clue what i was looking at anyway,
i will also get a copy of the report of the MRI, spinal tap and also the MRI of my neck
though it would still all be double dutch to me,

It was the Neurologist that told me that whoever reads the MRI's was puzzled about the amount of white spots all over my brain, and it was him that said they did not go brighter with the contrast, then added it is usually seen in smokers, diabetes, old age etc, which my Neurologist said was not so in my case, as i don;t smoke, am not diabetic, i am not that old (though believe me right now i feel like 90)

can anyone tell me if they have had a sensation of vibration down there spine when sitting down, I thought at first my husband had something electrical going and was making the chair vibrate, but that was not the case, this has happened several times,

Thankfully I have a boss who is fantastic and has supported me through all this, he has told me i am his best employee and cannot afford to lose me, when i am in the store on my own he calls every other hour to make sure i am doing Ok, and sometimes sends one of the other employees from another store over to help out if there is a lot of work to be done, he has stated there is no way i am going to lose my job, as i am now on the right track to getting the help i need (I Hope)

the thing is and this sounds probably so stupid, in a way i hope it is MS that can be treated and controlled and not something that they cannot treat, though MS would be bad enough to learn to live with, i know all of you on the board have MS and I did not mean for my comment to sound mean or selfish, it is just that i am so scared,

If i have not hear from the MS Specialist by Monday I will give them a call to see when i am likely to get an appointment,

I did look up MS but got so confused with the different types, I guess being in the land of limbo is the most frustrating, as i am sure you all know,  and have all been there

I will let you all know what the neurologist says on Wednesday, and will try and just retype what the reports say

thank you all again so much, and i will keep checking the board, and check out out some of the other articles you all have suggested

[Lulu54]

Greetings Tyler,
Here's a welcome from me too  - you have received excellent advice from others here.  And it sounds like your doctors are taking your conditions seriously and actively working on finding the cause.  

Those of us dx'd with MS will be among the first to admit that we could have a disease a lot worse than this MiSerable one. Your comment does not sound at all mean or selfish.  Its a hard thought to digest - having a life altering disease looming over you is not easy.

Take your time with trying to learn more - there is only so much you can absorb at a time.  Take a bite of information, chew on it a while, swallow and then repeat if your brain is still hungry for more.  

Bulging of your spine would be a separate issue from MS, which is a disease of the central nervous system.  Don't forget it is always possible to have more than one disease/problem going on at one time.

Hang in there - Wednesday will get here faster than you think.  Stay in touch, ok?

be well,
Lulu

[tyler175]

Hi
Sorry I meant to add the results or impression of my VNG

Impression: This Patients Videoynstagmogram Abnormal due to the presence of a left beating nystagmus during Dix-Hallpike testing to the left and head hanging positions and asymmetrical and optokinetic nystagmus to the right. these findings suggest a vestibular dysfunction and, in view of  robust and  symmetrical caloric responses are most likely central in nature. results should be correlated with previously obtained raidiographic studies,

this is what my first Neurologist ignored and told me it was a false VNG, he then told me i should go to physical therapy   I did have a second VNG done and it came back with the same results, which my new neurologist took seriously

sorry about the omission in my last post, I still do not really understand what the impression means
Tyler

[Udkas]

Hi Tyler what is a VNG test, what do they do?  Just curious as I have balance and vertigo issues.

Udkas.

[tyler175]

My VNG was where they had me put these huge goggles on and the had me look at lights that moved, side ways then up and down, and they got faster, then they had me lay on a table and blew hot and cold air in my ears, to provoke the dizziness, (I Think)
please do not take my word for that as i am not sure, then they hang my head over the end of the table then moved me from sitting to laying really fast, then they had me close my eyes and they closed the goggles so i could not see, and asked me questions, that i had to answer quickly, they did something some else like that too, and i could not answer them my poor old brain went blank, oh i remember they asked me to name 15 Cities in Arizona, i think i got to three before my mind went blank,

They did this test to see if the problem was central or Peripheral with my vertigo and imbalance, also did the test after my first MRI and MRA

ask your Neurologist if this test may be appropriate for you, I am no expert, I too am new to this forum, and don't understand medical terms, but you could Google VNG testing

Tyler

[tyler175]

I just found out today that the MS Specialist, has requested proof that I have MS before he is going to see me, he requested that i get copies of all the brain scans and spinal Tap results

is this a pretty standard procedure

thanks

[tyler175]

Hi all
I got the results of my spinal tap today which was negative for MS, there were no bands,

but the neurologist said that it contradicts my MRI, which is highly suggestive of MS as are my symptoms,

he has ordered that i have IV Infusions for 5 days of Solumedrol 500 mg, to see if it makes me feel any better, and steadies my symptoms a bit, until i get an appointment with the MS Specialist

So I guess i am still in Limbo land

Tyler

[Quixotic1]

A negative LP for Bands dose NOT mean you don't have MS.  On average, 1 in 20 people with RRMS has a normal LP for bands, and 4 out of 10 people with PPMS have no bands.

There is a myth that seems common among neurologists that a negative LP negates any thought of an MS diagnosis.  This is ridiculous!  A negative LP should not be used to discourage the thought that this is MS, though an LP with 2 or more O-bands is strong evidence pointing toward MS.

There is not even a recommendation that an LP be done as a necessary part of diagnosis.

So - keep this in mind.  I hope the steroids help with the current symptoms and that the MS Specialist does not have this same tunnel vision with regards to the importance of not having bands.

Quix

[Quixotic1]

Also, the standard dose of Solumedrol is 1000mg.  I'm sure that if 500mg had been shown to be effective that this would be the dose most often used.

Q

[tyler175]

Hi

Thanks,

the neurologist did say that because i did not have the bands of something, that did not mean i did not have MS,

he wanted me to have the Solumerdrol 500mg for 5 days, why would it be at this dose if 1000 is the norm,

the prescription copy i have i cannot read other than the IV bit,
pity i could not scan it onto this screen and see if you can tell me what he wants done

Tyler

[Quixotic1]

I don't know why some docs go for the lower dose.  We have seen it before.  It may be discomfort with the very high dose.  Until MS I had never heard of doses this high.

But, don't go fearing that this won't do any good, because we have seen people on "oral" steroids (at a FAR lower dose) who got some relief.

Good to know that your neurologist is not hung up on a negative LP.  :)) :))

Quix

[tyler175]

Hi Again

part of the instruction that i can read on the order is
Iv Solumerdrol 500mgs d??? for 5 days
C??? infusion to be n?? x4 ??
vital signs every 20 minutes in case of ????? Affects, stop IV Solumerdrol and page Dr

I just looked in my purse and forgot that i also had to go to lab and get even more blood work done, this time he wants to check for ESR, C-reactive protein, Ana, Lupus anti coagulation assay, Anti cadiolipin antibody assay, hyper coagulable panel,

Would this be that because years ago I had trouble with a deep vein thrombosis
or is it that he may also suspect lupus,
I am getting so confused, why would he want me tested for all this stuff

He also noted that i appeared depressed, and i told him so would he, if he did not know what was going on with his body

thanks for taking time out to answer my probably dumb questions
Tyler