second opinion for ms?

[juless]

Hi everyone!

I'm a 35 yr old female that recently went to my family dr. for a routine checkup and mentioned that I had been suffering from some disturbing vertigo episodes that I had never experienced before.  Was sent for an MRI and when the results came back they read....

The ventricles and sulci are normal with no mass lesion, mass effect or acute hemorrhage identified.  Multiple white matter lesions are seen bilaterally some of which oare oriented perpendicular to the ventricular system suggesting multiple sclerosis.  Diffusion images show no evidence of actue cerebral vascular accident.  the sella, brainstem and posterior fossa appear unremarkable.  No enhancing lesions are seen.  Visualized sinuses are clear.

Impression: MRI brain without and with contrast:  Multiple white matter lesions are seen bilaterally some of which are oriented perpendicular to the ventricular system suggesting multiple sclerosis.

First of all...I had no clue what MS was.  My dr. was very concerned and sent me immediately to a neurologist.  It felt like an inquisition at the visit and he said "well, you look good". He was dismissive of what symptoms I did tell him (numbness, pins and needles, imbalance, some slurred speach episodes and memory problems...and total exhaustion) He made mention of "depression".  I was ordered a spinal tap and bloodwork..all of which came back normal.  I was given a good bill of health..no explanation for the vertigo and sent along my way.

I'm still very concerned about what the MRI read and that he gave me NO explanation as to why I would have lesions?  His remarks were "they are small lesions and nothing to worry about".  Am I crazy for continuing to be concerned?  I would love nothing more than to put this behind me as a fluke and go on with my everyday stuff...but it's difficult when you just don't feel "right".

wondering if a second opinion is worth looking into?  I know very little about MS and have heard some very serious accounts of this disease.  My "symptoms" fail in comparison to many that I've read and I've never experienced any paralysis.

thanks for any comments you can offer!  they are appreciated

[juless]

sally,

Thanks so much for your support:)  It's funny that most people I tell about the vertigo just blow it off by saying "I get that all the time when I get up to fast"! I guess they aren't listening to me?  It has hit me at times when I'm sitting...no movement.  I had NEVER experienced anything like this before which is what had me so concerned.  Any time I mention a pain, etc...i hear "yeah, I get that all the time too".  Today for instance, I woke up after having slept for 13 hours..still felt exhausted..drug myself out of bed only to find that my right upper arm is in so much pain that I'd sooner see it cut off than have to use it!  I was told that I probably slept on it wrong....ughhh!  the chronic pain in my legs was an all time bad last night..and the best way I can explain it...is the feeling of a constant dull toothache?  The bottoms of my feet are nearly unbearable to walk on after I wake up.  I keep hearing that this is the effects of "getting Older"!haha  I can't imagine that at 35 my body should be this beat up already?  

I've see what tremendous care a GOOD physician gives...which is probably why I am so disturbed by the recent treatment I received from the neuro.  I KNOW there are good Dr's out there that do care and I'm deadset on finding one that doesn't belittle me.

This has been a very informative forum and the people all seem so caring and willing to offer good adivce.  It's nice to know there are people out there willing to listen.  

Nice to hear from you!

[Super_sally888]

Hi Juless,

Welcome.  That first neuro should be shot, or something....  they don't teach them sensitivity do they?  Or listening to patients, or taking into account anything...

Oh, the vertigo doesn't sound like a minor symptom!  That sounds major!  

I think some of these people make up their mind that you are well / faking at first sight and then will ignore anything that doesn't fit their preconceived concept.

This is a good place to be (the group - not the facing a possible MS diagnosis).  Keep us informed with how you go and ask any questions.  Hope that you can get things sorted out pretty quickly.

Take Care.

Sally

[juless]

Hi JonM!

Thanks for the advice:)  I did some research today and came upon the mellan clinic for MS at cleveland clinic. I'm a relatively short drive from there and have had some previous experience with the Cleveland clinic(mother went through cancer treatment there).  I was very impressed with the care she recieved, and I hope to find the same.  They informed me that I did not need a referral and could set up an appointment asap.  I'm wondering if anyone here has had any personal experience here?  I'm eager to get down to the bottom of all this and will definitly take everyones advice on making the timeline of symptoms.  I hate to admit it, but it's quite a challenge to remember "exact" time of events...but I'm more than willing to do the necessary homework if it means getting some valid answers!

Thanks again!

[JonM]

Wow, you do need a new Nuero.  I'm sure the next one will take you much more seriously.  Quix is right to tell you to make a timeline of your symptoms.  There are other threads on this forum that tell you how to do it and take this with you.

One point I would like to pass on.  If you do have MS (we hope you don't), start treatment ASAP.  It is the standard practice now days to start disease modifying drugs.  These drugs will not stop or cure MS but they do mitigate it where it is not as severe or disabling.  These drugs generally have few side affects and have a good long-term safety record, so you can't go wrong using them.  The sooner you start the longer you can delay what this disease will do to you.

Good luck with the new Neuro,
JonM

[juless]

thank you all so much for your insight and education:)  It's comforting to know that there are others out there who can relate to my frustration and offer some welcoming advice!  It's been not only a let down that this neurologist dismissed me and made me feel as though I was crazy, but that some family members have accepted his word as the final say also.  I have found an ms clinic at a very well known nearby hospital, contacted them and scheduled an appointment to be seen there.  

About a year and a half ago I was working as a server in a local cafe.  I was always very quick at my job and had what I consider a sharp memory.  Literally, out of nowhere one day I began stumbling and running into things at work...we all laughed it off to a possible inner ear infection.  While I was taking orders, I would have difficulty with my speech and "know" what I was trying to say...but couldn't get the words to come out right.  Again,  laughed it off to just being goofy and sounding like "daffy duck".  I was at work one day and the ABSOLUTE worst case of exhaustion hit me that I felt I could not recover from..this lasted for quite a few weeks.  I have been plagued by chronic lower back pain and when it became completly unbearable I went to my family dr and was diagnosed with a urinary tract infection(never had one before).  The medicine helped at first, about 2 weeks later I had a reaccurance and was sent to a urologist.  The urologist did kidney x-rays, and dismissed the uti's as nothing "serious".  I was having a horrible taste in my mouth daily that felt like it was coming from my stomach...again, went to my family dr. and was given nexium for acid reflux.   I had lost my mother to lung cancer about  a year before all this and everyone told me that the stress of her death was causing my health to deteriorate.  I never really bought this reasoning b/c I had been through more tragedy prior to her death and never felt physically drained.

The vertigo came literally out of nowhere one day.  I was at work, walked into the kitchen and the entire place began moving rapidly around me while I was standing still.  Afterwards, I became extremely sick to my stomach and again wrote it off to inner ear.  A few weeks later I was shopping at the mall with my two children(12 and 14), when It hit me again...this time I felt even sicker and absolutly like a truck had hit me.  The last draw for me was back in may when my son and I were driving in the car and I had a spell so bad that I started to black out and had to slam on the brakes out of fear that we would have an accident.  This episode is what sent me to the Dr. mainly b/c I was terrified of driving again.  Something I should mention...the family physician that treated me in the past for the acid reflux, etc....is NOT the family physician that treated me for the vertigo. I was forced to find a new primary care dr b/c of insurance.  The new family dr. was appalled that my previous dr had NOT ever tested me for the vertigo(I had mentioned it to him as well and was given antivert w/o any testing)...this is what brought me to the MRI

When my primary care physician called me into his office for the MRI results, he was very concerned and when I asked him if he was "sure this could be MS"...he said yes and wanted me to see a neuro ASAP.  He said to as well,  that 35 is generally the age when MS shows in women.  He made the appt for me with the neurologist and it was all downhill from there.  I felt as though he was "suspicious" of ANY symptom I mentioned.  In fact, his first words were this..."Boy, I bet you've been sitting around worried for the past month!"  and continued by asking me "Did you look up MS on the internet"!!! I was really offended that he would "imply" as though I WANTED to have MS! From that point on I said very little to him.  He did an exam in the office where he tested my reflexes..had me walk...and said "you look good..show no signs of paralysis..and walk fine".  I WASN'T complaining of those things at this point..those symptoms had occured about 6 months prior to this visit.  He told me that if I DID have MS it would more than likely be a MILD case and I would never have to worry about it.  He also drilled me about smoking..saying that would cause the lesions. I have NEVER smoked in my life.  As the rest goes...he ordered the spinal tap...blood work that I have no clue what he was testing for? and when that all came back normal, he released me from his care saying I was healthy.  I have also had out of the blue irrational mood swings in the past year that I had never experienced before.  I used to enjoy lying in the pool, but find that the heat makes me so exhausted I can no longer stand it.    I should mention also that I get sharp knife driving pains in my upper thighs and arms(but he said this is not typical of ms).  I've gone from being VERY active to someone that has difficulty not becoming exhausted after the most simple of chores.  I'm told this is due in part to depression....or stress.  

I would buy this if it weren't for the MRI.  The neurologist told me that having lesions on the brain can be a result of normal wear and tear?  I've lived a very simple life, never had a traumatic injury...never smoked...drink very rarely...and have been quite healthy.  The shock of having someone tell me that lesions are "normal" just doesn't sit well with me.

Again, thank all of you for your comforting words and it's so nice to have others that have encountered some of the same!  

God bless!

[Momzilla]

Welcome to the forum!

You must pledge for our Greek house -- Hypo Gamma Chondria.  Quix came up with that for those of us who have been dismissed by our doctors as either faking our symptoms (me and countless others) or depressed (you? --don't worry-we know you're not!) or generally just being passed on because the doc is too lazy or defective to figure out what to do with us.

I hope you are able to soon find someone who is worth your time.  I was able to get into an MS clinic in a metro area close to my home very quickly and found a very attentive doctor there.  Quix has also recommended going to an MS chapter meeting to see who everyone is raving about.  Great idea.  I really hope you pursue this further and quickly.  

Let us know how it goes and how we can help!

Zilla*

[6-paq]

Hello and welcome to the board!

As always, Quix has given you great advice, so I have nothing to add there.  :-)

I'm sorry your neuro let you go with a "clean bill of health" and no more follow-up testing, etc.!  

I went to a neuro complaining of constant headaches and brief periods of dizziness.  I hadn't suspected MS at all ~ thought I had sinus problems/pinched nerve, etc.  It definitely was a blow to hear "MS".  I had a childhood friend, who's mother had MS, but that's the only time I had ever heard the words "Multiple Sclerosis".  No clue as to what it was.

I too, had an abnormal brain MRI (2 lesions) and a normal spinal tap and bloodwork.  All of my further testing has come up normal as well (including office exams), so I'm in a wait-and-see mode with no diagnosis yet.

Like Quix posted, you need more testing done which could help with a diagnosis.   My neuro ordered a VNG and Brainstem Evoked Potential (BSEP), which showed that my dizziness was inner ear related and not CNS.   I'm still looking at getting treatment for my dizziness/headaches.  Right now I'm getting bounced back-and-forth between my ENT and neuro for that.  :(

My symptoms have been mostly sensory and somewhat "mild" in comparison to what others have been going through on this board too.  I have not experienced any temporary paralysis.  I have also not experienced the heat intolerance or fatigue that is very common with MS and that lots of posters here suffer.  But, my MRI is very suggestive of MS and my neuro is plugging away trying to find more evidence to give me that diagnosis.

Definitely search out another neuro and go for a second opinion.  No, you are not "crazy".  You know your own body and know when something's not right!

Take care and please let us know how you are doing!  Pat :)

[Quixotic1]

Hi, Juless, welcome here to our little place of refuge where we sort out what is happening to us.  We seem to have grabbed the corner of the market on the undiagnosed, the misdiagnosed, the dismissed (you ) and the diagnosed, but pissed off.  We seem to be a hotbed of people who have encountered dense, lazy, dismissive neurologists who won't consider the diagnosis of a common and sometimes disabling illness, unless every test is positive.  They can be rude, arrogant and make you wonder why youever bother to live, much less come their office.

You have every reason to wonder what hit you.  A simple complaint of vertigo and wham an MRI.  Your primary was on his toes.  Vertigo is a very common initial complaint - the one that brings people to the doctor.  Then only in being asked several questions, or reading on the subject do you begin to realize that all those little things that you put down to aging (35?) or a pinched nerve, or sports injury might have had some real significance.  BTW - the mean age of daignosis of MS is age 35.

The majority of people here without a diagnosis have symptoms and physical findings totally consistent with MS, but the initial MRI was normal or almost normal, making the diagnosis much more elusive.  You, on the other hand, present with THE classic brain MRI of MS and a neurologist can see it!  Even the lesions have the specific characteristics of MS lesions - oval, bilateral and with their long axis perpendicular to the ventricles.  This radiologist certainly did not think the lesions are a fluke and the neurologist did not do the proper work up to support his assertion that they are.

His next steps were a little odd in their choice.  I hope the blood work was for things like ANA, Lyme, RPR, Anti-phospholipid Antibody, HTLV I & II, ACE and such.  these are the things that can "mimic" MS and must be excluded to establish the diagnosis.  That they were all negative points more toward the diagnosis of MS, not away from it!  Sheesh!  

The other next tests should have been an MRI of the cervical spine and the thoracic spine.  These, along with the brain form the CNS, the central nervous system.  Lesions from MS also occur in the spine.  Though they are less common, they are more symptomatic. These two MRI alsoneed to be done with and without contrast.

His pronouncement of perfect health was far below the Standard of Care for his field and, after all is taken care of, deserves a complaint to the state Board of Medical Examiners.  The vertigo can be analyzed by means of a test called an VENG - VideoElectroNystagmoGram  which can help determine if the dizziness is from the inner ear (not MS) or the brainstem (likely MS).  The good news about this is you are WELL RID of him as you wouldn't want to be under his care for any reason.  He is either lazy, stupid, hates women, or is poorly educated.

Now, what I believe you need to do is find a new neurologist.  You can go to your local chapter of the MS Society and search for a specialist provider in your area.  Here is the link:

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage

The next thing you need to do, if you wish, but it is our specialty, is put together a timeline of all the symptoms that might fit with a neurological diagnosis.  I would encourage you to read a private, but excellent website on MS, especially the overview stuff on what MS is, how it is diagnosed, and what it acts like.  

http://www.mult-sclerosis.org/diagnosingms.html

You need to know that MS is not a death sentence nor is it commonly a steady progression downhill.  After 15 years only 50% will need any kind of assistance (cane, ctutches walker) at certain times to get around.  Less than 75% end up in a wheelchair.  It isn't necessariy a picnic, but most people with the most common form continue full-tme or close to full-time work.  Sometimes they just have to make some adaptations.  

If you would be willing would you tell us about some of the symptoms that you might have had before or since the vertigo?  Visual wierdness, numbness or tingling anywhere, weakness, dizziness, fatigue that is out of proportion to what you've been doing, stiff extremities, increase in headaches,  new areas of pain, but not injury, falls, change in urinary status, problems getting too hot,  speech or swallowing difficulties, cognitive problems (short term memory, word recall, multitasking, just feeling like your thinking was foggy).  Tell us when they occurred, how long they lasted and if they happened again.  Do you have children?  Did anything weird hapen in the 6 months ofter the birth of a child.  Any history of autoimmune disease in your family?

We are not, just as you are not, hoping for a disease, but your comments indicate that you don't feel quite right and have been wondering what the problem was.  We and you are hoping for an answer to this - which may be a diagnosis.  I think our specialty here is to support your through your "madness" and help guide you to the people who can answer the questions.

Well, I'm long-winded as always.  I'm a retired pediatrician newly diagnosed with MS and I think I'm a frustrated teacher.  If I haven't scared you away, then join in, give us a little info, and we'll get going!

Quix