Neuro visit awful ,need help

[mistylee]

I have just got home from the neuro. I am so upset I don't know what to think . I'm fed up and begining to think I just need to suck it up and get on with life!!

A brief history for you to fill you in... First attack 31/2 years ago lasting 4 months. blurry vision, falling over , balance issues , weak heavy legs , numb soles of both feet, crawling sensations in legs , vibrations in trunk etc. MRI of brain and spine.....more than 8 non specific lesions, largest 4mm in subcortical white matter. Repeat scan 3 months later no change.

The neuro told me it was an isolated case would resolve and probably never come back. Didnt know what it was. All bloods negative.

It took 6 more months for all the sensory stuff to resolve and a long time to get my strength back in legs. But it all went away eventually and I forgot about it and went on with my life.  A year later got trigeminal neuralgia for 2 weeks.
2 years later and another attack of this time weak left hand and arm and leg, pain in left eye, mild vertigo for 3 days, tightening around ribs and back, spasms on left thigh and right top of foot. Mainly a heavy left arm and a left hand not working properly, memory  not good and fatigue. Worse if I try to do much.

Saw the same neuro . He did an exam. Hyper reflexia in lower legs with clonus, left leg a little ataxic on heel to shin, tandem gait modest differculty. Then he tells me a possible MS. So repeat MRI of brain and spine. No changes.

So I go back to see him today and he does a quick 5 min exam and says well he doesnt think its MS as the exam doesnt show obvious signs to suggest MS and no change on the MRI after nearly 4 years.

So I ask him what then???? He says well a few people just get a few eposodes of  sensory issues that just go away and never come back  ....hmmm isnt that what he told me last time?? Also some people are born with those lesions etc and can be nothing at all.  I asked him if he had looked at the scans , he said ...ummm no my computors not working anyway the radiologist reads them .....blah blah.

Is weakness a sensory issue??

Then I start crying and try to tell him how it has affected my life. Unable to do any more than light housework, tire easily etc and this is not normal!!!

So he says get a lumber puncture which I havent wanted to do . He thinks it will be negative. so i guess I have to now.

He told my dr than he was suspisious of MS so cos no change on MRI all of a sudden I dont have it!!  But no other explanation!!

I feel so defeated, like  maybe its all in my head. Just want to cry. How can these things happen and no answers???

Please any suggestions for me now. I am dreading the LP. I am scared.

Mistylee

[Tammy826]

Hi Misty! I just wanted to give you my support. I'm going through the same thing! I'll keep praying we get answers soon. I had the LP & it wasn't that bad so don't let it scare you! I was completely over it in a week . Just plan on taking it easy for a few days! Take care & God bless you!     Tammy

[Wobbly]

I just wanted to say I'm sorry to hear another person has to go through this horrible part of trying to get some answers..

I say run as fast as you can to another Neuro.. get a LP...and see if you can get a full Spinal MRI... keep copies of all your records if you havent

take care  and know your not alone
wobbly
dx

[shermay]

I agree with above comments.  It's time to get another Neuro.  I too have never heard of a Neuro saying that you could have been born with lesions!!  It's time to move on.

You need to have peace of mind, so you can move forwards.  This Neuro sounds like a real wally.

I too have never had MRI with contrast, as I am allergic to it, but if the lesions are there, the MRI will find them, just won't show up the active ones.

I'm off to find my third yes third Neuro, as my first Neruro was all 'attack', the second one was counting how many lesions I had to make sure I had MS (oh please get real, I've been dx over 9 years now) so it just goes to show how Neuros differ in their opinions.

Thinking of you,

Debs

[mistylee]

Thankyou Ann for your encouragement.

I am already feeling better thx to all you kind people and I am going to persue this.
One thing I need to tell you all is that I have never had MRI with contrast.

This last MRI that has showed no change, if no contrast is done could an old lesion under attack show up bigger or is no contrast going to miss any new attack on the old lesions.?? I know if contrast had been done , with this scenario it would have shown an enhancing ring.

Mistylee

[opie74]

Sending love and concern to you.  Gather up all of the courage that you can, and go to the appt in February with the other Neuro.  Make a concise list or time line, reherse it.  

My Dx neuro is an Optho-neuro.  I still use him because there are no MS specialists in my area either.  He, like the one that you are waiting to see, have just taken a special interest in MS and has been studying it for a while. In a way, this is good.  I am not just another MS patient to him.  He treats his MS patients like his children.  

Keep a positive attitude.  Don't borrow worry form the future. And Believe yourself and stay on top of this.

Best to you,
Ann

[mistylee]

Hi Quix,

All the mimics have been ruled out , I have had every blood test .
The only one not done is a chest xray for scardosis which he is doing but the symptoms for this is nothing like what I expereince.

I have read the lies my neuro told and also the criterior for MS. I am so glad for your advice Quix. I am not going insane. I also really in my heart think I have MS. Thankyou thankyou for your response!! I feel  now able to persue this till I get answers.

I will keep you posted as to the LP results .

Mistylee

[Quixotic1]

I have to back up the other members here and say that what you have been through sounds suspiciously like MS.  You are not in good hands with this neurologist.

He has ignored screaming signs of spinal disease.  Clonus (extra contractions with a single tap) is a VERY abnormal physical finding and screams disease.  "Brisk" does not descibe clonus.  The term would be "pathologically hyperactive".  When the reflexes are different from side to side (called asymmetrical) it is another tip-off to look for something like MS.  

A neurologist that doesn't look at his own films is not worth his salt.

Then he gives you multiple explanations for the same thing:  Lots of people have these lesions (NOT!), you were probably born with them (then why are you just having symptoms now?).  Mistyless, have you read the thread "Lies my Neuro Told Me"?  If not you probably should.

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

He has committed at least four of those "lies" with you, ie; No change in the MRI means no MS (WRONG!), Pathologic hyperreflexia is not a possible sign of MS (WRONG!), Everybody has lesions (WRONG), You were born with lesions (WRONG), I don't have to read my own MRIs (wrong, wrong and WRONG!)

There are two kinds of nerves, sensation (feeling) and motor (movement).  The sensory nerves carry info TO the brain so we can feel sensation, pain, hot/cold etc,.  the motor nerves carry info FROM the brain to the muscles telling them to move.  A damaged motor nerve will result in a muscle that doesn't move well and feels weak.

Even though no one can diagnose anything online, you appear to have fulfilled the needed criteria for MS.  1)  You have had more than one attack of symptoms suggestive of demyelination.  2)  You have evidence of damage to the central nervous system in more than one area.  3) If the mimics have been properly ruled out (and this seems doubtful with this neurologist, then the  4) abnormal MRI pushes you over into a pretty definite diagnosis.  So, ruling out the mimics seems to be what we don't know.

So, I am glad you are seeing a different neurologist who is interested in MS.  That's all an MS speicalist is in this country.  There is not official certification.  A doctor just needs to see 50% or more MS patients to qualify as a specialist.

When you see the new doctor be sure you describe the separate bouts of symptoms and tell him that your reflexes showed clonus.  Your regular doctor should be able to verify this for you and for the record.  All doctors are taught the neuro exam in training.  

Even if the doctors in New Zealand follow the McDonald Criteria, you would likely qualify for a diagnosis on the basis of the 4 things listed above - just the rule out process needs to be complete, and that is very important.

Stick with us!

Quix

[mistylee]

Thankyou Heather for your comforting words. Your right , this is not in my head and after hearing what you went through it gives me hope to find answers.

HVAC and rendean also thankyou for your suggestions.  In NZ we dont have neuros that specialise in MS as such but there is a neuro here in Christchurch that has a special interest in MS which I have already got a referal to .  I see her in Febuary.  If she has an interest im hoping she will be more knowledgable about it and easier to relate to as I find i am unable to ask pointed Questions to my current one. By the way his specialty is Parkinsons.

Also when he discovered the hyperreflexia with clonus , he just said to me that my reflexes are hyperreactive and never mentioned clonus. I discovered what it was by googling it. It was so obviously happening. He made it happen 3 x on both feet.  They bounced many times after tapping with the hammer.

He did it again on his 5 min exam and it only happened with clonus on the left foot. The right foot only bounced once. Also the reflex on the left was stronger.

He never told my DR this . In his report he just said they were Brisk??

I am waiting now to get my appointment for the LP. I guess I need to have it now as I dont know what else.  I need to listen to you folks as I begin to doubt myself and think  it will be the same as before....no answers, noone helping me!!

Mistylee

[rendean]

I agree with Alex about seeing a neuro that specializes in MS.  I also agree with Heather that your signs and symtpoms sound like MS as you have many neurological signs such as the clonus and hyperreflexia.

Hang in there and find a doctor that will listen to YOU and not simply read an MRI to make a diagnosis. It sounds like you fit all the McDonald criteria if this is waht the doc is going by for his diagnosis.  If not MS, then what is it?

As for the LP, most people do fine and don't have the post-LP headache. The procedure itself is not as bad as it sounds. My LP was done under fluroscopy (x-ray guidance) and was a piece of cake. Is your LP scheduled?

I'm sorry you are having to endure all of this...it is not in your head. Find a better doctor and I believe you will find an answer.

Sending good thoughts and hugs,

Ren

[HVAC]

Can you go to another Neurologist may be one Specializing in MS?  Sounds like this Doctor has his mind made up.

Alex

[Heather3418]

I am so sorry to hear that you are going through all this c r a p with your doctor.  I sometimes hate to give my opinion, because I don't want to give anyone, misinformation.

But as a layperson looking at what you have been through, I have to say, it sure does sound like MS to me.  Just because no changes have been seen on MRI, since your first MRI, does not mean that there aren't lesions that cannot be seen, that are beyond the resolution of the MRI.

Your MRI and lack of changes are exactly what happened to me.  I had 5-7 lesions on my first MRI that lite up like a Christmas tree, after contrast.  I was in an active attack.  The Neuro gave me a diagnosis of MS.  I went to another Neuro a year or so later and he did another MRI.  No changes.  He repeated the MRI a year later, no changes.  He said not to MS. (due to lack of changes on MRI)  Yet my symptoms continued.  I left this second Neuro's care, because he was an idiot.

A year or so later, I finally showed changes on MRI, doing from 5-7 to 12.  Contrast dye showed I was no in an active attack at the time of the MRI.  The third Neuro said MS and then did an LP.  I only showed "one band" on the tap, but he still said MS.  He prescribed Avonex.

A few of years later I moved to a different area and again a different Neuro.  By the time I saw her, I showed 23 lesions in my brain and a lesion in my spinal cord, that was there from the very first MRI.  So much for the second Neuro that said no to MS, because I showed no changes on MRI for several years.  He was treating me based on MRI's and not treating me as the patient.  That's a sign of a real jerk doctor in my opinion.

I still think you have signs and symptoms of MS.  If this doctor cannot come up with a reason for your current symptoms, then you need to find another doctor.  This can make all the difference in the world to your future health.  It did in my case.

There ARE answers out there, Misty....you just need to find a doctor that will listen.  Dern these doctor's that take such a cavalier attitude, because they treat you based on the MRI and not treat YOU as a patient with symptoms.  

By the way, to answer one of your questions, I do NOT consider weakness a sensory symptom.  You need to find out what is causing that weakness.

Good luck to you dearheart.  We are here for you every step of the way in your journey.  Please find a doctor that cares enough to treat YOU and not a set of films...

Best Wishes,
Heather