Does anyone have any insight for me?

[Hope75]

I am not getting much support from my previous posts, so I'll try once more.  One person has offered information for me and I appreciate it greatly, but I would like to hear from others re: their experience and road to diagnosis.  I spent a great amount of time over a year ago learning about MS and felt I had it for sure, only to change my mind when all MRIs, LPs etc came up negative.  I don't know what to think when people say that they had few or no lesions and still were diagnosed.  I have another fellow Medhelper that is going through the exact same thing and they are more worried than I, but we support each other.  We are both at the point of giving up on getting MRIs and stopping the neurologist merry go round.  Do any of you have any info. for us?

[Mand125]

I meant the "ask a question button".

Mand

[Mand125]

Hi Karen
You have tagged this question at the end of an old post and it might not get noticed.

You would be best to click on the "ask a question" post and start a new thread that way.

Mand

[karenh60]

Hi, I'm new here. Got slammed with what may be vertigo or BPPV or maybe Meniere's or whatever?? I have to take some tests in about a week called VNG, tympanometry, regular hearing tests,otoacoustic emission and brainstem evoked(or something like that).
Santana8: i addressed this to you at first b/c you posted your VNG results,mainly the bicaloric and had numbers: left warm 18.2, right warm 12.0, left cold 14.3 and right cold 16.5. What do these numbers mean?

Also can anyone go thru all these tests with me(except the regular hearing tests) and tell me exactly what they do to you including putting objects in you and for how long. I'm really phobic of drs., in fact my dad had to convince me to go to his ENT dr. wednesday.
Also I've been off work all week, can't afford that!!
It also seems like it's gotten a lot better since Tues(when it woke me up in the middle of the night)and I'm going to work today(Friday).

Finally last question(I promise): since i'm doing better then by the time i have the tests (if it doesn't happen again) will the cold/warm test bother me as much as it would have if I was still having vertigo severely?

History: 1.migraines as a child before puberty then they were gone now premenopausal I get them but not as severely.
             2.Car sick a lot as a child;now occasionally but interestingly got carsick a week or two before this happened. Mom/Dad had to stop the car so I could throwup(when a child not last week).
            3. Feeling like my head is pushing forward.
            4. Typical dizzy/nauseous (but not as nauseaous anymore).
           5. Sometimes whoosing noise in head or ears not sure where.
          6. High blood pressure(last year went over 200 many times but I wasn't aware but fairly controlled now like 140's-150's/90's still bad but working on it).

Do y'all think I could've had a stroke? Ok well sorry this is so long. Thank you in advance,Karen. P.S. Email is ***@**** (couldn't find a place to put it when I signed up).

[patientx]

Thanks.

[Quixotic1]

I answered on of your earlier posts.  I hope it was helpful.  Sorry it is belated.

Quix

[santana8]

My symptoms started suddenly one day while in the store shopping. I was looking at prices and suddenly could not understand what the numbers said.  I could see the numbers, but they were confused in my mind.  I felt very confused and disorented.

Over the course of 7 days my vision and other symptoms worsened rapidly.  I had an SSRI change six weeks prior to this onset of symptoms and immediately suspected the new med (Paroxetine).  I was jerked off of the Zoloft I had been on for 14 years and changed to Paroxetine the very next day without any tapering of either med.

Paroxetine list distorted vision, photophobia, blepharitis, and visual field defects along with a lot of the other symptoms that I was having.  I called the doctor who changed my meds and he said it was unheard of six weeks into the Paroxetine. I ended up in the hospital at the 7 day mark, where it was passed off as a physiciatric problem, and I won't go into the nightmare that happened with that right now as it is too long.

But to answer your question my origional symptoms were in this order over  7 days-three weeks.

Visual confusion

Confusion

Distorted vision, straight things looked curved, and thing looked wider and blown out to the right.

Photophobia(light sensitivity)

Mental Status changes(depresion, anxiety, a hyper state)

Back pain

Shooting thigh pain in both legs

Sudden Anorexia

Vomiting/diareah

Rapid  weight loss( 40 pounds in three weeks)

Trouble concentrating or holding a train of thought

Flashing/Flickering lights

Dressing Apraxia

Right left confusion





These symptoms happened from week #3  to the 3 month mark:

Numbness in eyes, forehead and scalp

Dimmed Vision (color washout)

Blured Vision (like a curtain or viel was over entire vision field)

Pressure/pain behind eyes, in head, and face,

Stiff/painful neck

Visual Virtigo

Vibrating in ears

Blepharitis(inflammation of the eyelids)

Meibomian Gland  dysfunction( tear film)



~Santana~

[patientx]

Would you mind listing your initial symptoms, other than the vision problems?

Thanks.

[santana8]

I have put many hours  over the past two years  into studying all MS mimics.  This is a broad and complex task for a lay person like me!  I have no medical experience and before I had this attack was basically a stay at home mom of three boys! I have gained a lot of knowledge both through my own studying and from this forum which has been priceless to me for information.

I have taken the approach of learning as much as I possibly can about all of the mimics and focusing on the ones in which my course and symptoms fit with the most!  If I find one that could be a real possibility based on  test results, symptoms and the course of my illness, then I directly ask my neuro to rule it in or out!!!!

One example of this is Susac's Syndrome, which has mainly vision, hearing and white matter lesions in the Corpus Collosum.  I have Corpus Collosum lesions, I had sudden vision loss, and also vibrating in my ears.  It seemed it could fit me, so I ask my neuro about this syndrome.  He was not familar with it, but was definately interested in it once he quickly looked it up.  He said that he would need some time to study it and educate his neuro radiologist on it.  They studied it, they compared my Corpus  Collosum lesions to see if they matched the location.  They reviewed my Optho records and  ordered hearing testing.


The  Answer they found on this one was:

My Corpus Collosum lesions were not centerally located, as the ones in Susac's Syndrome most always are.

My Optho report showed no Retinal artery occlusions, which is one of the main symptoms of this.

And all hearing test were normal and I had no sensory hearing loss, which is the third requirement for this syndrome.

I had a lot of the symptoms of this syndrome both in vision loss and vibrating in ears and the lesions in Corpus Collosum, but the test results prooved that this was not what I had. So the bottom line is just because it looks like a duck and quacks like a duck, doesn't mean it is a duck!!

My neuro said that he was glad to learn about Susac's as he may have a patient in the future who might have this.  He wasn't insulted or mad that I ask, and even said it was interesting!!

This is only my way of getting through this insanity.  I am a person who is not happy just sitting and playing the waiting game, and especially with my vision, health and future!!!!

I cannot dx myself obviously, I am not qualified in any way as I have no medical training, but I know how to read and I am determined to learn as much as possible about every single mimic of MS and hopefully keep getting each one ruled out by my neuro until the correct DX is the only one left.

This may not work for everyone, but for me it works!!!!!!!!!  It makes me feel more in control of what is happening to me and of the quality of care I am receiving!!!
Some people have told me you are wasting your time studying all possibilities, but the way I look at it is  I don't have anything but time on my hands right now.  My inability to drive because of the visual field defect has left me stuck home a lot, so I use the time to learn as much as I can.

I get so much information by just reading others post here. Sometimes I don't have a reply because they are discusing something that I am not familar with, but I am soaking in the information  and learning from thier post just the same!

Hope, this is a hard road sometimes, but we all are in this together, leaning on eachother, learning, and hoping for the correct answer soon!!!  Hang in here and I think you will be amazed at what you can learn here!!!!!!!!!!!!!!

~Santana~

[kitty_female]

My kids have an appointment at UCLA, I hope we can find answers.  Most of the tests that I had show normal results. I do not know how to resolve this puzzle. I know that all those symptoms (similar to Hope75) are not in my head. My kids have them too, but like I said less intensity- except for the fasciculations (spasms).

Which unit did your sister visit at UCLA?

[Hope75]

Thanks so very much!  I got a message from one of this forums members that I had offended several people.  I am sick to my stomach over it!  I posted a thread under "I offended someone?" to hopefully clear it up.  She said I was saying that people "without a degree" aren't as knowledgable - or something to that effect.  I can see how she would get the wrong impression by the way I typed it, but she just took it completely wrong.  I meant the opposite - how could I as a med professional be treated so poorly when you would think, of all people, they would be on their best behavior.  Someone on the inside of the profession can sometimes be over-vigilant and look for things that the doc does wrong and I know how to make their life difficult, you know?  For example, my aunt is getting Dx'd with MS as we speak, but she has spent over 10yrs getting there!  When I finally got into the med profession in the last few years, I had to give her a list of things to ask of her neuro so she could get some answers.  I told her to get a VEP and finally - she failed it, plus has multiple lesions on MRI and relapsing-remitting course.  Guess what - MS!  We were happy though, because before my help, she did not have any pull and did not know what to do or ask her neurologist.  He dismissed her at every turn (she is really shy and would not push him).  Now she is getting answers and will be trying the appropriate drugs, therapy, etc.  
I am printing your posts to study a bit for some possible answers.  Even if I don't get answers, I really appreciate the support and that, in itself, is priceless!  

[sundawn]

I just read Santana's interseting reply. I, too, have heard of ADEM and yes, this could be it.
PD also has myelin sheath involvement and the breakdown of levadopa (dopamine) in the brain.
I do not recall the number of lesions my sister had but due to a car accident last year at someone else's hands, I too, now am disabled(other problems, too) but I was told I also have lesions on the brain and my dx is a tearing or a diffuse axonal shearing injury which causes memory, concentration, cognitive and early onset Alzheimer's. The good part to my situation is that the medication I take for this ($180.00/month for the remainder of my life) DOES help to alleviate the symptoms and can delay the onset of ALZ.
There are so many disconcerting and difficult to diagnose right away neuro disorders and for my sister it was nearly four years of misdiagnoses (most said MS)....none said PD until she went to UCLA!
Again, If I can be of any further help and support, I will be here.
God bless.

[kitty_female]

There is a member (Hava) that posted a Breathing technic; it is realy good. I'm following it, and I feel more relax and it helped my with the the symptoms. I also have many mimmic symptoms. Doctors have ruled out fybro and many infectious disease. My case may be different (my two kids started with same symptoms almost at same time, but their symptoms are less intense compared to mine - you can read my journal for more detail).

Be patient, with answers,  there is a lot of people that will help you. I often get lost in the forum, even with my own postings (I can not find them). Since is difficult to find things, If I find something that will help me I copy it to word to read it later.

Here is Hava suggestions:

"by hava






Do this and you will be able to get your body to normal health.Continue the exercise once a day, for rest of life,to stay healthy.
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.Build up your timing slowly and after two weeks at the suggested duration you will start to notice benefits.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for upto 30 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.


Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 10 times
----
Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to master the technique.This is  simplified pranayam for everyone and you do not have to go to classes to learn. This is for life unlike short term classes where you do it in the class then stop when classes are over."

Hope you feel better.

kitty

[sundawn]

Long story but there are so many different  neurological disorders and many have alot of the same symptoms.
Several years ago, my sister was dx'd w/MS & we went to symposiums, etc., you name it. She was even told she needed back surgery....the creeps!!
Finally, I told her to go to UCLA and within five minutes the doc knew what she had. He watched her walk and then performed the 'cogwheel' test on her wrists.
Then, to thoroughly confirm his dx, he put her on Sinemet, the only drug that if you have Parkinson's, will remove your symptoms. That is what she has.....NOT MS. MANY patients are misdiagnosed w/MS when PD is actually the culprit (or some other neuro disorder).
I am not sure your symptoms matched hers at the beginning but they sound similar.
Hers began w/a twitching in her right thigh muscle....deep,deep inside. It would come and go and sometimes bother her and burn a bit and tingle. Then, this became more frequent in her thigh and then she developed foot drop in her right foot, but she did not realize this when she walked. She only felt some difficulty with her gait. Many more LV docs and meetings later, as I said, the dx was made at UCLA.
Now, this is not to say this is your dx but MS is a tricky dx. The surefire way to dx PD is if the Sinemet works, you have PD. The wrist cogwheel test is taking your wrist into the air and turning your hand in circles at your wrist, both ways; each hand. If there is difficulty in smoothness and fluidity of movement and if it is jerky, this could lead to a Parkinson's dx. Again, the true test is the drug, Sinemet.
Good luck to you.
Hope, have HOPE.

[sllowe]

Hey hope - I had bumped your thread, must of been exactly the same time you posted this one.  I think the other will give folks here more background for comments......

Hope people pick up on that one - it gives us a lot to go on, and a lot of it we've been through too.  My MD said my problem was classic stress - until I went to the neuro. Obviously, these symptoms make us stressed.  

I'm going to ask people post on that thread since it's got most of your info - k?

Hey all, please post comments on Hope's "idiopathic neuropathy or MS" thread if you can....

thanks,
Shelly

[Heather3418]

I have searched back through your posts and see that you posted for the first time on the MS Forum on the 9th, I believe.  You received some good answers.

It seems in the summertime, that alot of people are not at their computers as in the cooler weather. That may be why you have not received a flood of answers, but never the less, you have received comments and suggestions.

I notice that the majority of your posts have been on other Forums, one of which is famous for not receiving an answer.  It will remain nameless.

My opinion, as a veteran MS'er is probably the same as Santana's.  I sincerely hope that you will stick with us, until others with more knowledge see your post and respond.

Hang in there with us and welcome the MS Forum.

All the Best,
Heather
(All other forum members, yes I am typing.  Took my hand out of all that bandaging and am trying to use my fingers whether the doctor approves or not.)

[Hope75]

Thank you so much for your kind words and sharing your story with me.  I hope that you get some answers soon.  I have become real familiar with MS through my entire work-up.  The first MRI report I had said one lesion in the corpus callosum, non-enhancing.  Could be MS plaque.  Then my first neuro said no MS, because it has to be multiple and diagnosed me with fibromyalgia.  Then he sent me to a pain clinic and didn't want to get another MRI or LP to check for lesions in the future!  He pretty much wrote me off:(  

ADEM is interesting, I've never heard of it.  I will do a little research, so thank you for telling me about it.  I'm sure you just want answers like me so you can take the right medications and steps on the road to better health and feeling relaxed again.  I cannot relax with these undiagnosed symptoms reminding me every day that something is wrong.  It is as if my body is crying out "help!" and I can't do anything about it.  The helplessness is the worst.  BUT, on the bright side, we are fine today and that is all you have.  I have some pain, but I am functioning fine.  For that, I am truly blessed.  

Take care and I will be interested in your latest news!

[santana8]

Me too, I mean in this boat too with all of the other limbolanders!!!!!!!!!  I have had one severe attack which hit my vision the most, but some other disfunction also.  Mine was a acute(sudden onset) and my vision and neurological dysfunction reached the worst peak in about one week.

They think I may have had Retroubulbar Neuritis( ON, but further back on the opitc nerve).  I ended up with a visual field defect called a inferior harmonious quadrantopsia.  Which basically means that I have a blind area in one of the four quadrants of the field of vision,  in both sides of the vision field. ( shown up on visual field testing with each eye being tested separately)

This result got me sent to my first neuro, who done a brain  MRI without contrast that showed 10 white matter lesions .  He also done a VEP that was possitive.  He  dx me with MS with only these two findings and sent me out of his office with a bag of prefilled samples of Rebiff.

I ask him about further testing to confirm this dx and he did not think it was necessary, and had not even done blood work on me to look for other causes.  This seemed way too rushed and fast for me and I got a second oppinion.

Second neuro done blood work, Brain, C-spine, and brainstem MRI with and without contrast.  No change from first MRI two months earlier.  He also done an LP which was negative with no O banding.  He Dx me with ADEM, one of the MS mimics and has been watching me with repeat MRI's every six months for the whole two years.  So far no change, no new lesions, and no enhancement.

It is time for a new scan now, but I am having to switch neuro's again because mine is taking a new job somewhere else. I will see new neuro on July 29th.

ADEM( acute demyelinating encephalomyelitis), inflammation of the brain and or spinal cord is an acute illness that bears a striking resembleance to MS and is sometimes indistinguishable in the acute stage, as was the case with me!  

It does the same kind of damage to the myelin sleath as MS does, but the difference is it is a monophasic(one time) illness and rarely has recourances.  

This is just one of the many mimics mentioned above that may need to be ruled out to have a definate dx of MS.

I have 10 lesions on the brain and still don't fit the MS criteria for diagnoses. I am lacking a second attack in space and time.  Had the LP been possitive or any new lesions shown up, I would have already been dx with MS, but so far this has not been the case!!

So for now I am stuck between these two dx unless something new developes!!
MS seems to be a dx of exclusion and even with multiple lesions, like I have, it cannot always been made in certainty without further evidence to suport the DX!!

This is my experience on the road to trying to get the correct DX, and pending!!!!!!!!

~Santana~

[Hope75]

Thanks so much:)  I agree with taking a break.  I am going into a fighting mode again, because I am having a flare up right now.  You can check my profile for the details, but in a nutshell, I have burning feet - sometimes burning moves all around the body, fatigue, migraines (less now when off the pill) fasciculations, tremors and at my worst I could hardly walk (for about one week) as my legs felt like rubber.  I can't stand the heat when I am at my worst as it makes me weak and feel tingles and prickles all over.  I have looked into every possible diagnosis and been tested for literally almost everything to no avail.  I did have one little blip on my serum electrophoresis and it showed a gammopathy (I honestly don't remember if it was monoclonal or polyclonal) - elevated IgM or IgG - can't remember.  All this and my aunt is in the middle of getting diagnosed with MS and she has optic neuritis right now.  Thanks again and I understand that this forum is a wonderful place:o)

[Tahiri_Veila]

I don't know that I can help you much, but I can tell you that I am in the same boat.  I have many symptoms that mimic MS, I have doctors that think that is what it is, but I have no diagnosis.  My MRI is clean so they will not do an LP.  It is frustrating to be sure, but you can't just give up because you need to know what you are fighting.  I can tell you that I to am sick of the neurologist merry go round, I have even taken breaks from it every once in a while.  Feel free to do so as well just to give yourself an emotional rest, but make sure you come back and fight again.

I don't really know your story.  What are your symptoms? What have you been tested for? You have a negative MRI and LP.  Have the doctors checked for the common mimmickers? There are a lot of them.  I personally am starting to lean towards the idea that I may not have MS, but one of the great mimickers.  You should look into them if you havent.

I also wanted to apologize for not seeing many of your ealier posts.  Usually people on this forum are very helpful and kind.  I am sure plenty of people will help you out, but sometimes I have found that it could take a couple of days to get an answer.
Tahiri