Scared of neurologists

Friday was my neuro appointment after having completed a new brain MRI, EP's, EMG and a LP.  The appointment did not border on ridiculous it was insane.  This morning I am trying to figure out whether to try a Mayo Clinic or the Cleveland Clinic Mellen Center.  

The MRI was compared to an MRI I had in 2004.  Basically the report reads that multiple small focal areas of increased T2 signal are present in the deep white matter about the ventricles.  These foci of increased signal appear slighlty larger and slightly more numerous than on the 2004 study.  The conclusion is:  Oval small T2 hyperintensities in the deep white matter.  The findings are consistent with MS in the appropriate clinical setting.

The other tests were all inconclusive for MS.  I have been at this for 12 years now.  This was my 3rd MRI of the brain.

The neuro would not dx MS.  The dialogue went like this.

Me - Is there any other explanation for my symptoms and the lesions on my brain.

Dr. - I can't tell you that

Me - Should I be concerned about these symptoms, especially the weakening of my left side with the lesions showing up on my brain?

Dr. - Not at this time.

Me - What is my next step?

Dr. - You could come back in 6 months and repeat the MRI to see if there is any change.  You need to have the MRI's done in the same place on the same machine.

Me - They have all been done in your hospital on the same machine unless the hospital has a new MRI machine since 2004.  This new MRI does show changes.

Dr. - I have to be able to see the changes myself and I did not have anything to compare this MRI to.  
At this point I am scratching my head and thinking there is something wrong with this picture!

Me - You told me on the last visit that there were changes since the 2004 MRI.  How did you know that if you had nothing to compare too?

Dr. - I am not trained in reading MRI's.  That is not my area.
I was trying real hard not to lose it at this point and asked her 3 times to repeat that statement because I could not believe what I was hearing.

Me - I asked her for copies of all office notes and test results.  

Dr. - I can get those for you now.  When she returned she told me she would NOT go for a second opinion anywhere in this area.  That would be Kansas City....a big city.

As I was getting ready to leave she said she could treat my symptoms.  I asked her symptoms of what?  Then she said, "even if I did dx MS the only thing I could do is offer you the (okay, can't think of the term she used, but it was what I know as the ABC drugs).  I told her I needed to know what was happening to me.

I took the reports and left her office with my husband.  I have played this conversation over and over in my mind and none of it made any sense.  To think she put in her notes that she felt this was all psychological.  I feel strongly that I'm not the one who has psychological issues!

The beginning of my issues started in 1996.  I was standing in a checkout line at a grocery store when the whole place started spinning.  In the blink of an eye I had the strangest sensations in my legs and knew if I didn't kneel down, I would hit the floor.  I told the lady in front of me that I needed help, something was wrong.  She told the cashier and the next thing I knew an ambulance was taking me to a local hospital.  They put me in a cardiac unit and after being monitored 48 hours they sent me home assuring me it was not problem with my heart.

After that attack I just did not feel right.  I started having strange sensations in my arms and legs and the dizziness would not let up.  After an office visit to my personal physician he told me I was starting menopause.  If this was menopause I told myself it was going to be pure h**l.  A few months later I started having tingling in my hands and then feet.  At times it felt like someone was sticking hot needles in my toes, but thankfully those sensations did not last long.  Then it moved to my fingers.  I started researching menopause and could not find anything that was happening to me fit that bill.

I went back to my physician.  He literally walked out the door, threw a hand up in the air and announced to me there was nothing wrong with me and I needed to see a psychiatrist.  A few months passed and I told my husband I should see a psychiatrist that things weren't getting any better.  I certainly wasn't opposed to a psychiatrist if that was what it was going to take to get rid of the nasty things happening to me.  Of course he started me on antidepressants.  The first year of seeing him the med was changed 5 times and none of the symptoms disappeared or even improved.

By this time I was having tremendous pain in my face.  A friend suggested I see a dentist that maybe I had some bad teeth.  There were no bad teeth.  The dentist did send me to a specialist thinking I might have TMJ.  The specialist ordered an MRI of my jaws.  He called me to tell me that there were some UBO's in the brain that showed up on the MRI and suggested I see a neurologist.  

Off to a neurologist.  He ordered another MRI with contrast.  The lesions really showed up and there were 18 of them.  After an exam he said it was most likely I had MS and wanted me to go back to my personal physician.  I was not about to go back to "Dr. there is nothing wrong with you" so I needed to find a new one.  Unfortunatley, I had not found one before it was time for my next appointment with the neuro, he was unhappy with me and let me know about it.  As far as I was concerned he was not going to be the doctor who treated me for anything and I set out to find a new one.

I found a female neuro who I really liked.  She was amazing compared to stories I have read in here.  In 2002 she dx'd me with MS.  I began having new symptoms over the next couple of years and she thought I should see an expert in MS.  She sent me to a specialist in St. Louis at the Barnes-Jewish center.  This doctor took away the MS dx and sent a letter telling my neuro to stop all treatment.  Within the next 9 months my favorite neuro stopped her practice to raise her children.  

4 years passed and I was not improving.  Symptoms are off the scale now and the past 18 months I am having serious issues with strength on my left side.  I decided to see another neuro and chose one in the same group of doctors I had seen before.  What a mistake.  I think she is a lunatic to put it mildly.  The beginning of this post is the dialogue that took place last Friday.

I have had some nasty falls the past couple of years because my left leg just gives out without warning.  Tingling in hands and feet are almost constant now.  More and more episodes of face pain.  Cannot hold on to anything in left hand.  Starting to have headaches....never had headaches.  Numbness especially on left side, but sometimes on right.  Dizziness, tired all the time.  UTI's, bathroom urgency....when I was in my early 20's I had to have my bladder stretched because it would only hold 4oz.  I do wonder if that could be some of my bladder problems now.  The only thing I do not have problems with is my vision.  Rarely, I will have a bit of blurred vision, but I think it's because my eyes get tired from reading.  I have muscle spasms in my back, feet, legs and toes.  OUCH, those hurt.

I just plain feel crummy most days now.  No energy and almost losing the will to survive and after the appointment last Friday, going to another doctor just doesn't appeal to me.  There is so much good information in here that I am trying to cowboy up and continue this battle to find out what is wrong with me.  I am just so tired and do not feel good.  This journey has been much too long.

Challengecase

[Heather3418]

What I don't see in your post...correct me if I am wrong, is an MRI of your entire spine, with and without contrast dye.  If you haven't had this and any lesions show up, considering your symptoms, this would be highly suggestive of MS.  Highly suggestive.

There is no reason that this has taken so many years.  I am sure you are SO frustrated.  We want to help you in any way that we can.  I would say the first order of business is an MRI of the spine.

Oh and welcome to the Forum.  I haven't seen you post before.  If you have, forgive me for missing it.

Best Wishes,
Heather

[AMO]

hey challenge,

I am really sory  you left thhhhe appt with no morw answers than beofre, but yet with more stress.

A couple things i'd say,  
one is, you neeed to have a neuro who IS trained in evaluating your scanns. While radiologists  write the reports, more eyes seeen them (and who is intelligable) the better.
I have incredible neuros, and they see diffeently than the radiologists, all contributing, but only within their limits.
The radiologist may be missisng something that could help, and with the neuro not reading them, you are not in the best hands.

All my neuros read them (ms specialist, neuromuscle, neuro-opthamologist, neuro-otolaynologist, movement specialist,) and see things a little diffently.

I have had dx'ds changed over hte years and i understand hoe frusturating it is for oyou.

I hope for you  to get to a doctor you can trust again.
be well, amo

[sandybock]

I think your neurologist and my husband's are related. It sounded just the same as the conversation we first had...at least until the LP came back. He told us we could NOT get a second opinion. HA!

You just hang in there. Write down all the symptoms and sign and date it. Have someone take videos of you. I know you will find the right doc.

Sandy

[Want to feel well!!!]

Honey, your story is awful!  You need to see a doctor who will listen to you and figure out what is happening to you!!!!

Listen to everyone here who knows exactly what steps you should take.  Someone more knowledgeable can give you the right advice.

Hang in there!

Wanna

[challengecase]

I have had spinal MRI's with and without contrast, but only the cervical and thoracic.  In 2004 the report on my cervical spine came back showing a tiny syrinx.  After having a new spinal MRI in February the report said there was no evidence of a syrinx.

I have wondered if what they saw in 2004 could have been a lesion, but this new Spinal MRI said there was nothing there.....just don't have a clue.

[Freespirit24]

I feel for you greatly *big hugs* ......................we need an MS neurologist rating forum here so we can find one to go to that others trust and have had good experiences with and to know the ones to avoid. You need a new one but who????



Sarah

[Heather3418]

Your spinal MRI was sufficient to give them any information about a lesion.  I don't know from what you describe, if that is what they saw.  Has your doctor done a Lumbar Puncture to see if there is inflammation in the cerebral spinal fluid.

I don't understand how they can "dismiss you" with 18 lesions in the brain.  The fact that what they saw in the spine has resolved is good news.  If this is MS, that is a good sign.  It took 12 years for my thoracic spinal lesion to start to show some shriknage.  It's still there, but has shown some decrease in size and length.  You wouldn't know if by the symptoms I have in my legs though.

I wish you could find a doctor that would not "dismiss" you and say to come back in 6 months.  You are obviously having problems that need attention.  They need to keep looking until they have a diagnosis...no matter WHAT they decide on.

Keep pushing.  Sometimes that's all we can do.  It takes perseverance to find that one special doctor.

You are in my prayers,
Heather

[santana8]

Hi, I don't think I have spoken with you yet. I have been on the forum for a couple months now. I found this forum because I have literally done nothing but study online looking for answers to my case which is difficult too!  I have a brain full of white matter lesions and like you I first had a sudden symptom while standing in the store. I had sudden onset of vision disturbance and my symptoms worsened dramatically over the next month. I had had an abrupt SSRI antidepressant switch 6 weeks prior to this and was convinced that this was what was going on. IT took me eight months to finally  be sent to a neurologist.

The fifth eye doctor finally done a visual field test right after he accused me of making up the vision loss. It showed an inferior harmoneous quadrantopsia( loss of 1/4 of the vision field. Then after all of the doctors not believing me because my vision was 20/20, I was finally sent to a neurologist. This is when the brain MRI revealed the lesions. I don't know exactly how many there is it looks to be 6 to 10 lesions.

Today April 2  is the two year mark since that attack in that store. I still don't have a definate dx. My neuro thinks that I may have ADEM which a monophasic( one time) illness with not relapes), since I have hot had any new lesions or new attacks in two years. He has been doing MRI's with and without contrast every six months to look for changes suggestive of a second attack.But so far no changes. He done a spinal tap that was negative and showed no O banding.

He is not the first neuro I was sent to. The first one done an MRI without contrast and a VEP that showed slowing and dx MS with only this evidence, and sent me out of the office with a bag full of samples of Rebiff. Now, it wasn't that I did not think I had MS that detered me away from him, because he showed me the multiple lesions on my brain. The thing that made me get a second opinion was his total lack of interest to rule out other possible disorders. He didn't feel the need for further testing, he had not even done a blood test on me. I asked how did he know that this was not infection in my brain and he said that's why we done the bloodwork. I said you didn't do any blood work on me. He said we didn't?   I said no. He said well we need to get that done. Now go home and start giving yourself these injections of Rebiff. I was in tears and went up to the receptionist desk and ask her, what am I suposed to do with this stuff . She said let me see what he has given you. She looked through the bag and said, don't take any of this yet, we have to send someone to  your home to show you how to inject the meds and I will get it set up.

I left that office scared to death. I went home and  took a week to soak it all in and decided that I needed a second opinion. The second neuro and still my current Neuro done the blood work , threw the MRI without contrast to the side and ordered  one with and without contrast. He done a spinal tap and has been doing MRI's every six months to watch for progression.He is leaving my dx for now as ADEM but has told me that this may end up being MS and the only way to know for sure is long term monitoring. He did not start meds and he said he would not until Adem was ruled out.

I was also sent to a neuro opthalmologist who's opinion was even though I had a negative spinal tap that I had MS. The Radiologist who read my  2nd MRI which was the first one done with contrast, thought I had PML, which is fatal in two months. My neuro told me this and patted me on the shoulder and said you don't have PML. I said then why does the radiologist think I do. He said that's why he is the radiologist and I am the neurologist. He looks at pictures and I treat patients, and you don't have PML. Again I asked how do you know that. He said because if you did you wouldn't be standing here taking to me almost a year later. He ran a polyomerce chain reaction on the spinal fluid to check for the marker for PML  and also done an HIV test, because PML is mostly found in immune comprimised patients with HIV. Both the PML test and HIV came back negative. So I guess the neuro knew better than the radiologist in my case.

Waiting for this test to come back was the longest two weeks of my life. It was two weeks before christmas 2006. I remember having to put up the christmas tree with my three boys wondering if this would be my last christmas with them ever. There is no feeling like wondering if you have less than six months to live and worring that you may die and leave you children before they are grown. After that test came back negative and I knew that I was not going to die, it changed me forever. To be honest MS looked pretty good at this point and I realized right then and there that I could get through whatever I have as long as God  let me finish raising my boys.

Now I haven't given up on finding out for sure what happened to me, and what I really have. I don't wait for my Neuro to initiate more test, I ask him to, and I will continue to until I know the answer. So far he has not refused to check out anything that I suspect while researching my symtems. If he ever does have a problem with me being active in my own health choices that is when I will move on to someone who doesn' t care to do thier job.

I told you all of this hoping that you would see that no one else in this whole world can do the things that you can for your health. This is your body, your life and you shouldn't stop until you find a neuro who will be as dedicated as you are to find the answers. You have that right to expect this kind of care. Don't give up, don't quit pushing for answers, be a pain in the butt if that's what it takes to get someone to listen. You will find the answers if you keep moving forward.

Hope this helps you in some way
Santana8

[santana8]

I forgot to ask you if you have had a spinal tap? If you did what was the results?
Santana8

[sllowe]

Hi there,

Can you go back to the Neuro who dx'd you in 02? Why did she not start treating you then?  You say she sent you to the MS Specialist, but that one took away the dx.  

Is there a particular reason you can't go back to the general Neuro?  Such ashame to not have the protection of meds all these years, especially if it's MS, and seems the original Neuro hit it on the head.

be well,
SL

[challengecase]

Thank you for all the encouragement and time taken to respond to my post.  You are all so caring and very helpful.  After spending hours reading thru the forum yesterday it gave me the push to make an appointment with a MS specialist and will see her on May 15th.

I did have an LP, EP's and new Brain MRI all in the past month.  According to the neuro all tests were negative for MS except for the brain scan.  I do not have any medical background to make any sense of the test results.  I have tried to look things up, but do not understand the technical stuff.  There is one part of the LP results that is bothering me.  
FINAL PATHOLOGIC DIAGNOSIS:
cerebrospinal fluid for cytology
- Rare mature lymphocytes present.  (See comment)
COMMENT:
The thinPrep is of low cellularity with scattered uniformly small mature lymphocytes present in the background.

Does anyone have a clue about this reading?  There is something about this that is unsettling to me.

As for the brain scan.  My 2004 report reads as follows:
FINDINGS:  The diffusion-weighted images are grossly unremarkable for acute ischemic event.  The cranioverterbral junction and cerebellar pontine are clear.  The sella turcica and pituitary do not appear enlarged.  Within the cerebral white matter, there are multiple T2 hyperintense lesions that are seen throughout.  These are also present on the T2 FLAIR images.  After the administration of intravenous contrast, I do not see any definite enhancement of the lesions.
CONCLUSION:
Multiple T2 hyperintensities consistent with myltiple sclerosis.  I do not see definite evidence of active plaques.

The recent brain scan of 2/20/2008 reads:
Multiple small focal areas of increased T2 signal are present in the deep white matter about the ventricles.  These foci of increased signal appear slightly larger and slightly more numerous currently than on the 3 November 2004 examination.  No brainstem or cerebellar hemisphere hyperintense to detected.  The diffusion weighted study appears normal.  The ventricles are normal in size and are in midline.  Images obtained following administration of contrast reveal no vascular abnormality and no region of abnormal brain enhancement.  Specifically, no enhancement is seen in any of the deep white matter T2 hyperintensities.
Conclusion:
Oval small T2 hyperintensities in the deep white matter as described above.  The findings are consistent with MS in the appropriate clinical setting.

The neuro told me the lesions were starting to cluster along the ventricle.  I have no idea what that means and no idea how she figured that out since she told me she had no training in reading MRI's.  She also told me she was sure I had MS on that visit, but when other tests came back negative she said she would not dx it.

To Heather,
The MRI of the cervical spine with contrast reads:
The brain stem, cerebellum, and spinal cord are of normal caliber and signal intensity, except for a very small 3 cm long, syrinx extending from the C6 level to the mid to upper T1 level.  
This was from a 2004 MRI and when I had one done in February this year whatever they saw did not show up.  I have wondered if this wasn't a lesion instead of a syrinx.  From my understanding a syrinx does NOT disappear, but elongates.  

I am so glad I have found all of you and hope everyone has a peaceful and symptom free day!!
Challenge

[challengecase]

The neuro who originally dx'd MS is not practicing right now, so she can stay home with her children.
I would love to be able to see her again!!!

Challenge

[santana8]

You said that your lesions seem to beclustering along the ventricles. My neuro told me that mine were next to one of the ventricles in the corpus collosum. I would like to know what that means too! Maybe Quix or Heather or someone will know the answer to this.

My neuro won't dx MS because the other test except for the VEP came back normal, and because there has been nothing new in two years. I am confused about this all and it is scary just waiting to see, but what choice do we have? I will be looking for your updates on things.

Take Care,
Santana

[challengecase]

Bump....hope this works.

[Rena705]

Wow...I see what you mean honey...we are two peas in a pod are we not???

I just got home from my doctor appt. and I am going to post what happened and then I am going to go lie down for now...however, I will be re-reading your history and see if there is anything in there that I might be able to help with ok?  My Mother is having surgery tomorrow (minor but she's 80) so you can understand I am sure that the next few days are going to be a little up in the air.  If I don't get back to you by Friday, Please let me know ok...I may need a reminder but it's only because I am looking after family obligations, not because I have forgotten about you ok?  In the meantime, I hope you keep well and I will talk to you soon!

Lots of Hugs,

Rena

[Rena705]

Hi there challenge...I asked Quix about the "Rare mature lymphocytes present" and she said that they are a good sign and that it is a healthy sign!  So that is a good thing right?  As I said before it is wonderful that you will be seeing an MS Specialist and the following is what you should expect from the MS Specialist...I copied and pasted it so it sounds a little clinical...

Ok, so you have been to see your pcp (USA) or g.p. (Canada) and they think that your symptoms are pointing towards something Neurological...possibly Multiple Sclerosis.  They tell you that you are going to have to have an MRI and you will be referred to a Neurologist.

STOP!  You have to tell your doctor that if there is a possibility that you may have MS you need to see an MS Specialist rather than a Neurologist.

Why you ask?  While a neurologist can deal with many neurological diseases, if you are suspected of having MS you NEED to be treated by an MS Specialist.

An MS Specialist is trained to study your MRI and has the experience to discern differences in your MRI that a Neurologist or Radiologist is not.  This ensures that you will have the proper results at the start of what could be a long road to a diagnosis.

When you go to see your MS Specialist, the first thing that he/she will want is a full history.  It would be helpful to both you, the patient and the doctor if you were to make up a timeline of your symptoms ahead of time.  This will give the doctor a better picture of your symptoms and will take the pressure off of you to remember everything in a stressful situation.  

The next thing the Specialist will do is a full in-office Neurological Exam.  It is imperative that this exam is done and if it is not done it is up to you to be pro-active and INSIST that this exam is performed.  

This is a head to toe exam that may include requests for you to walk across the floor heel to toe, you will be asked to touch your finger to the doctors finger suspended in front of you and then to your nose with your eyes closed, you will be asked to rub your heel down your opposite shin...nothing too scary, they just seem a little strange.  A good exam will probably take 30 minutes or more.  The results of this examination will tell your Specialist about your Mental Status, Cranial Nerves, Motor Skills, Coordination and Gait, Reflexes and Senses.  This in office examination is crucial to the possibility of a diagnosis of MS.

Ok, so now you have had an MRI and an in-office examination and the results are inconclusive...What next?

Your MS Specialist may suggest a Lumbar Puncture.  It sounds scarier than it is and most people have no difficulty with it at all.

During the Lumbar Puncture the MS Specialist will extract a small amount of spinal fluid from your lower back and it will be studied for the presence of Oligoclonal Banding which is present with MS.
If there are no Oligoclonal Banding a positive IgG index will suffice as a positive LP.  The fluid will also be studied for a myriad of other diseases as well.

If MS is highly suspected but there is not enough evidence for a diagnosis then Evoked Potential testing is brought into play.  Evoked Potential testing measures the time it takes for a nerve to respond to stimulation.  There are three types of tests used to obtain evoked potentials, Visual evoked, Auditory brain stem evoked and Somatosensory.  Each response is recorded from brain waves by using electrodes taped to the head.  Visually evoked response is the most commonly used to diagnose MS.

These are the tests that are used to try to discern whether a diagnosis of MS can be made or not.  It is very important to remember that a good MS Specialist that suspects MS but can find no indication, follow up with the patient at 3 to 6 month intervals, for years, if necessary, to gain further information.

I know that you have already been through the ringer with all of this honey but I think all you can do at this point is wait until the 15th and then we can take it from there ok?  I can totally relate to the frustration you are feeling and you deserve to be seen by someone that is truly concerned with your well being...that along with the support you can gain from the wonderful people here...we will get through this because we are strong because we HAVE to be and we will back you up 100% ok sweetie?  Please keep in touch...you also have much to share and help other as well and we all need all the help we can get!

Lots and Lots of Hugs,

Rena