Question for Quixotic1 or anyone who would know...

My question is should I rest assured that my doctors have appropriately ruled out MS, or should I push for more tests?  Is there really any benefit from knowing sooner?  

Here's my deal:

I've been having MS like symptoms that have been getting stronger every day for that past 9 weeks.
Symptoms:  tingling which has progressed to a more steady vibrating feeling that goes down my legs and into toes.  Down arms into hands.  Above the neck seems the worst:  terrible metallic taste, tingling in face, across eyes, the eyes themselves tingle and feel prickly sometimes, back of head gets a funny tickle, ringing ears.  Very limited strength issues but have had a couple instances, one where when standing on right heel I barely had the strength to lift my toes up in the air while leaving heel on the ground, the other was with my right hand, I had done some strenuous yard work, but two hours later could hardly hold a knife to cut an apple.

I do not have the classic symptoms that my doctors expect MS to present with: weakness, vision issues, but rather only those listed above.  I had an MRI with and without contrast and it was clean, so my GP and my neurologist are 100% satisfied I don't have MS.  But here I am with all these symptoms (getting stronger every day, more painful, more persistent etc.) , and they have no idea what's causing it.  I had blood work to test for thyroid, vitamin B, not sure what else they checked.  I had an EMG that showed peripheral nerves were fine, showed muscle connecting to nerves were fine (at first I thought that was good news, then learned MS attacks the cord not the peripheral nerves, and the clean EMG only pointed back to MS) They've tested for many other things and  found nothing wrong.

Here's one more thing that may be relevant: I was in bad job situation for about a year leading up to the point when my symptoms started.  Every day, for hours on end my mind was completely occupied about the horrible job situation I was in. For horus I would rehearse in my mind the speech I'd give when I quit.  I hated working for my boss, and the boss above him.  I ended up switching jobs but by then I started having all this tingling, and my source of incredible stress simply changed from the job situation to self diagnosing myself with MS with info I found on the internet.  My last couple blood pressure readings have been 155/80, stress indeed.  Could stress lead to all this?

[wishforchange]

Hi,  I am a relative newcomer to this forum and can assure you that there are people here who are amongst the most knowledgeable and kind I've found, so you've come to the right place.  Many here have far more medical and personal experience than me, but just wanted to add one question as this is something that has cropped up now and again in studies with people having MS like symptoms.  In all your blood tests, did you have a blood clotting screen done?  There are conditions such as 'sticky blood', which apart from being risk factors for thrombosis (blood clots), can also cause MS like symptoms.  Stress always makes the blood more clot prone, it's the body's way of protecting us from bleeding to death if we're attacked - fight or flight reaction etc.  This may be worth talking to your doctor about.  It can be treated if the results are positive.
The other suggestion is to look at the Health Pages at the top right side of this page, where you may find answers to your questions, eg. whether the strength of the MRI machine was enough.  One thing they talk about is that so many other conditions can present with similar symptoms to MS, and it is better to get the right diagnosis rather than have MS diagnosed as a last resort.  In the long term getting the cause of your problems needs to be found out, but it may or may not be MS.  Try to keep an open mind on this, but find doctors who take you seriously and are prepared to work on this until you get an answer.
I really hope others with more experience here answer your post too.  I'm sure they will.  They've been great with people who like you and me, are undiagnosed (my story is somewhat different.)  And yes there can be a stress element, but stress is an element in all chronic conditions.  If the stress lifts and the symptoms do to, then you can maybe hope for the best as it being a temporary thing, but you deserve to get this checked out as thoroughly as you need.  I hope you get answers and even better make a full recovery.

[sllowe]

Hi there,

Well, it never hurts to get a 2nd opinion for anything that you are having problems with.  You can dig through your reports and labs and read up on what should have been ruled in and out, but it would be best if a Doc did this.

My thoughts are to go back to the Doc.  Ask him or her what conditions they ruled out by way of labs and testing.  Mention if he or she minds you get a 2nd opinion because you are not feeling any better. Get copies of all the reports and studies before you leave.  Worse thing they can say is they don't "think" you need a 2nd opinion.  

You don't need their support to do this.  Even though your MRIs are clean, it doesn't mean something besides a demyelinating disease is going on.

As much as you won't want to go back to them, if the minimum you get from the visit are all your reports, you'll be ready for your next move.

hang in there,
SL

[wonko]

Hi IP,

Hello, and sorry to hear about your discomfort.  For what it is worth, you're not alone.  You describe how I felt exactly in Jan.  My advice is to get ready to be patient.  It may take time for you to know what is going on.  Is your neuro willing to follow up and keep an eye on your symptoms?  If not, then I'd say you do need to find another.

I am really in the same boat.  My first episode in Jan sounds very much like what you describe.  I had MRIs in Feb (& blood work, EMG, etc) that were fine, and my first neuro told me not to come back (in so many words).  I DID get better, for about a month, but then the sympomts returned, stronger and more numersous.  So I had to get a 2nd neuro.  He did another EMG (still fine), and told me to come back in a couple of months.  

Like you, I have had no major issues with weakness, mostly tingling/buring/pain and some minor eye and ear issues.  But it HAS made me very uncomforatble at times, and I still want to know what it is.  While still mild, it has gotten worse over time so I refuse to completely ignore it!  Like you, I can still do things, but if I work with my hands, they start to burn after a few moments...THAT DIDN'T USED TO HAPPEN, RIGHT?

So I guess what I am trying to say is that you shouldn't settle for "nothing" as the reason all of these odd sensations showed up.  You didn't have them before, so you don't need a doctor to tell you that SOMETHING is going on, right?  But you should try to be patient and take good care of yourself while in "iimbo."  You mentioned stress.  It can not hurt to speak to a therapist about if stress could factor into your sympomts.  And trust me, not knowing why your body is doing this could be a new stressor in your life, so it is worth it to take some time now to figure out how you will handle this and other stress in a way that hopefully won't make your symptoms worse!

I also have gone back to my GP periodically to ask about new symptoms.  She thinks my problem is neurological in nature, but I still see her to keep ruling other problems out.  Like my ear has been hurting for weeks, so I went to see her to look at it.  Sure enough, it's not infected.  Everytime I see her, I ask her again if there are any other tests she can think of, any tests she thinks should be repeated, or anything else I can do (lifestyle-wise) to try and get better and/or get answers.

A lot of doctors will try to say "oh its stress" or "oh you are depressed."  So making sure you are handling your stress well and keeping your spirits up is really important, since not many things are more depressing/stressful than knowing your body is telling you there is a problem, but having your doctors tell you it is emotional.

I would also recommend that you do what you can to lead a healthy lifestyle.  If you are already fit and eat well, KEEP IT UP!!!  If you have areas in which you could improve, now is a great time to work on it.  It really made me feel better during all of this to know that I was taking action to help my health.  It also makes it harder for doctors to dismiss you as emotional, since good diet and exercise are good for reducing stress!

For me, it has all been a difficult and delicate balance.  I want to advocate for my own health, but not go overboard pushing too hard too fast for answers.  I want to be patient, but I don't want to suffer and mess up my career, personal life, etc.  I want to take care of myself, and of course my health will benefit, but I don't think eating my veggies and exercising will fix this, but it will keep me strong during this trying time.

I find that it helps to keep a journal of what is happening to me, what my doctors are doing for me, and what I am doing for myself.  But I will throw in a word of caution.  A lot of advice on this forum leans toward bringing a list of symptoms to your neuro.  Personally, I do not think this is a good idea for some one WITHOUT a diagnosis.  Keep in mind, in their eyes, you are healthy.  So to them, a physically healthy person carrying around a list of symtpoms, for which they see no physical cause, well, they may interpret this as hypervigilant.  So while I log what has been happening to me, I do so for myself, not to bring with me to appointments.  I'm sure you'll see advice on this forum going both ways on that.

So looks like I am starting to write a novel here, but I was really taken aback at how alike your current situation is to mine a few months ago.  So I don't have answers yet, but I'm doing my best to try and tell you what I would tell myself if I had a time machine!

Please, take good care of yourself.  I hope you feel better & get answers.

[InvisiblePin]

Hey guys, thanks for your responses, I really appreciate each one of you responding to me, you guys have a great group of people here.

Wonko, what other ear/vision issues have you had?

I've had pain in my ear too (mostly right ear).  I've also heard some really flat sounding notes out of that ear.  

I've had some odd vision issues too - sometimes when my face is tingling the tingling goes across my face, into my eyes, into my nose.  Sometimes for a split second my right eye will go blurry - never for more than a second.

[wonko]

Hi IP,
Glad my "War and Peace"-length response didn't put you to sleep!

Like my other symptoms, the ear & eye stuff seems to be enough to bother/discomfort me, but not big enough deals to show up!  My right ear has been hurting for about a month.  I'd say it's a moderate discomfort.  It's not infected, so it's just on my list of weird stuff of unknown origin.  

I've had MILD eye pain and "trails" for about a month, and for a couple weeks see flashes when I move my eyes.  They really show up in dim or dark rooms, and scared the heck outta me at first!  I saw an opthomologist (today, as a matter of fact).  Once she saw my retinas were OK, she seemed more concerned about the pain, which got pretty bad when she made me move my eyes around for her tests.  She did mention optic neuritis (sp?) which is a condition associated with MS.  However she said that ON would not causes flashes, and that the pain and vision problems would be much worse.  I'm glad she'll follow up just in case, my eye issues are too mild to be ON but always good to watch out when your senses could be at stake!

I can relate to the tingling across the face!  I have a sunburn feeling on my cheeks most of the time, and sometimes tingles spread from there to inside my nose and onto my eyelids!  It happens a lot in heat, like getting into my car or cooking.

Here I go again, a rather long chapter 2.  I hope you have a good weekend and get to feeling better.  It is both a relief but also upsetting to be able to relate on this stuff!

Take care of yourself!

[Quixotic1]

For the sake of completeness, I would make sure you have been tested for all the things that cause a predominantly sensory neuropathy.  You mentioned Vitamin B, but did not say which one or ones.  It probably was B12, but you should make sure.  

You describe the sensory things are being both hands and both feet. And it sounds like both side of your face and both eyes are affected.  That would be very unusual (not impossible) for the onset of MS.  MS is more commonly is more asymmetrical at the first onset, then often becoming more both sided later.

Make sure you have had Lyme disease ruled out with a Western blot test and not just the screening ELISA test that most doctors order.

The very brief sensations you describe are also less likely MS.  Because the symptoms of MS are the result of actual damage to the nerves, the sensations are more than fleeting.  They last until the damage can be healed through remyelination.  So you can see that momentary symptoms do not usually signal MS.

Wonko - Wow!  The ophthalmologist you saw completely contradicts what we have heard over and over hear.  ON DOES frequently involve "flashes" of light that occur with eye movement.  Also, the pain can be anywhere from nonexistent to very severe.  Many people have phyical evidence of ON (such as prolonged VEP, pale optic discs, or lesions on MRI) but have NEVER had symptoms of otpic neuritis.  So that shows that you can have ON with symptoms.  Many people here on the forum have had ON confirmed when the pain wasn't  that severe.   The same is true for vision.  Also, the fundoscopic exam may be normal in 50% of cases of ON.  That is because 50% occur so far back on the optic nerve as to not cause changes in the optic disc.  

I have to say that this ophthalmologist will miss a large number of ON cases.  This is unfortunate.  ON can occur with flashes of light on eye movements, minimal pain and minimal vision issues.

Quix

[InvisiblePin]

Quix, thank you for your response, I' will indeed check into your suggestions.  I've just recently found this forum and find it to be an incredible forum.  I sincerely hope and pray for you.  I hope you feel great satisfaction in the work you do here and the help you provide for others, you certainly deserve it.

[santana8]

I had sudden onset of vision distortion two years ago. My fundiscopic eye exams were and still are completely normal. Normal appearing optic nerves, normal retinas, and normal visual acuity!

About five months into this I got a visual field test which showed an inferior {bottom} Harmonious{in both eyes, or both sides of the vision field} quadrantopsia{ loss of vision in 1/4 of the vision field}. This means when both eyes are tested separately I have a blind lower right quadrant in both eyes. The visual field test shows it as a left defect, but because the nerve fibers cross somewhere in the visual pathways, the defect shows up on the right. {left side of the brain controls right vision field, and right side of the brain controls left vision field.

This finding prompted the opthomologist to get me to a neuro, who did an MRI that showed about 10 white matter lesions. I also had a VEP which was possitive and showed slowing in one side.

My blood work was all normal, and my LP was negative and showed no O banding. With these findings, and no new lesions in two years, my neuro thinks that I had ADEM, a monophasic( one time ) illness that is very similar to MS. I am currently still being watched for MS.

My neuro and neuro opthalmologist think that if I did have ON that it was farther back on the optic nerve back toward the visual pathways in the brain. This form is called Retroubular Neuritis, but has the same symptoms as ON.

I had these eye symptoms in this order:
distorted vision
photophobia(light sensitivity)
numbness in eyes
flashing and flickering lights, especially with eye movement and even with noise
dimmed vision(color washout)
masked vision( like looking through a viel)
blured vision
pain that went from mild to sevier(behind eyes and with eye movements)
pressure in eyes and head
twitching across face, esecially around eyes
visual field cut
diplopia ( on side gaze)

My doctors say that I most likely did have Retroubular Neuritis eventhough my eyes are completely normal on exam. All of these symptoms are brain related. I did not recieve any treatment and have healed from this naturally and very slowly. I am about 75% recovered, and have been told that some residual deficits could be permentent!

I had an extreme onset and a sevier attck with this, but some here have had much milder onset and still had ON. Any abnormal vision dysfunction should be taken very seriously because your vision could  be permenantly damaged.

~Santana~