"You don't have a demyelinating disease"

[LisaJF]

I went to my neuro-ophthalamologic examination yesterday.  My vision restored from a 20/30 (in hospital examination in April) to a 20/20.  He told me there was nothing wrong with my eyes structurally (lens, retina) and there was no neurological cause behind the "diplopia".  He said, "You should be happy you don't have MS.  I looked at your MRI (3 minutes tops) and "the lesions are atypical for MS".  He dictated his summary in front of me (as I sat there shocked feeling like I was being dismissed after 11 months of symptoms), how readily he dismissed the possibility.  

Yes, I am happy if a 3 minute evaluation by a neuro-ophthalmology MD of my MRI would definitely know what they are talking about.  He feels its ischemic lesions.  

On one hand I want to believe what he is saying (true -- who wants a demyelinating disease?) and on the other hand, I felt skeptical of his assessment.

He dictated his summary to the MS Specialist in front of me stating that he is positive that the T2 hyperintense lesions are ischemic in nature and not a demyelinating disease.  

Good news huh?

I wonder how the MS Specialist will respond to that.  Will he too dismiss my symptoms since 2006 with worsening of neurological sensory and motor deficits in 2010 to 2011?  

Let me know what you think.

Lisa

[LisaJF]

Hi and thank you for your detailed response!

Since 2006, I've had Lyme (ELISA) tests drawn. I'd say the complete count was at least 8 or 9 times all came out negative.  My CSF Lyme came out negative too.  I think I am satisfied that I do not have Lymes disease at this time.

I do realize that Lyme disease can mimic MS as many other diseases do too.  But, my primary and my MS Specialist are comfortable as well as I am that this is not Lyme related.  

I'm glad you have finally received your diagnosis and are being treated for it.

Thank you again for your lengthy explanation and the time you have taken to write it!!!

Lisa

[MsWobbles]

That young doctor, unfortunately, seems to be so common today in our country and I have experienced many like him.  He takes your money and gives you what seems to me to be a preconceived conclusion:  You don't have MS.  There is a definite trend in the U.S. now not to diagnose.  The idea is to just treat symptoms rather than diagnose, I guess because it is easier to do that, much to the patient's detriment especially in cases of infectious disease which, undiagnosed and untreated, can progress to disability and premature death.

Yesterday I had a nerve conduction study/EMG done and there were abnormalities on the nerve conduction study in my leg where about 4 times when I should have felt a shock and my limb should have jerked, I felt nothing and there was no jerking.  Afterward I was told that, yes, there were some abnormalities in the sensory of my leg, but they were likely age-related and required no further inquiry.  That's how it is now:  Positives are turned into negatives.  For instance, you had positive MS markings on your MRI, but your young "quack" turned them into negatives by his cursory review (did he even look at them at all?) and firm pronouncement that they did not represent MS.  I have found the cockier the doctor, the less they seem to know.  Quix, on the other hand, is not at all cocky and she is a veritable fountain of medical wisdom!

I have also been told by some doctors that the muscle wasting in my forearms is actually something quite normal (bones are supposed to show through and protrude eh?) which I know is just more cockamamie, as does my rheumatologist.  

I think you know in your gut that your young "quack" is wrong.  You have something!  It may have MS.  But also, I think you should consider chronic Lyme disease which can very well mimic MS and other neurologic diseases.  What you need to know is that you must go to a Lyme-literate doctor for proper evaluation.  You cannot trust a mainstream doctor to know much, if anything accurate, about chronic Lyme since for a long time the existence of chronic Lyme was denied by the medical community.  Especially don't go to an infectious disease doctor about chronic Lyme.  They seem to know the least about it and tend to discourage Lyme diagnosis.  I speak from experience.

All the symptoms you described above I have had, including the nighttime bed wetting and diplopia.  I now have a "clinical diagnosis" of Lyme - that means it is not just based on diagnostic testing, but the whole picture.  The standard lab tests for Lyme are horribly inaccurate and can fail to diagnose more than half the people who have chronic Lyme.  You can find a Lyme-literate doctor by finding a Lyme support group in your area.

There is current thinking that MS may well  be caused by cell-wall-deficient bacteria (as is Lyme) for which lab testing is currently not being done.

It speaks poorly of your young "quack" that he was doing his ministerial chores (dictating your visit summary) during the time you paid for to have his full attention.  Shame on him!!

I understand your frustration!  Trust your instincts!  Don't be fooled by what appears to be intelligence!  Intelligence and honesty are not always found together.  Good luck to you!

WAF

[LisaJF]

I told the ER doctor that a MS was a diagnosis was in consideration.  She was certain after seeing my  myoclonic jerks and intention tremors, along with the spasticity in my toes or foot and back and urinary retention that it is.  However, what does she know.  She's not a MS Specialist.

I really don't know which one is worse, but I have the feeling APS is the lesser of the two evils. So of course I will pick that one.

We'll see won't we?

Lisa

[anon07072023]

If MS is worse, and APS is less detrimental, then I definitely hope it's APS - if it's one or the other. Of course, I wish it would be neither of them, and you were fine.  

I don't really know too much about APS, besides what I just read quickly about it, when I googled it. I'm so glad that you have a wonderful primary doctor that supports you. It's so important to have a good doctor in your corner.
If you do have APS, I think it may be good that you're taking aspirin every day. It is kind of a blood thinner, right?

Don't let that ruin your ego...you are "pleasant."  :-)

I see that you're off to the ER?  What's going on...you'll have to call me or send me a note....


LOVE and Hugs, Kelly

[LisaJF]

I would not be surprised if my laboratory tests come back supporting the diagnosis of APS.  I don't know which is worse, but I have a feeling MS is.  As you know, I don't want it. :)

(I also know that  you all who have it, didn't want it either).  But I think I'm hoping the lesser of the two evils.

I rather have him take this time to make a decision on such a life altering diagnosis, wouldn't you?  I don't want him rushing into saying its "MS" before I get the blood work back regarding my aPL and LA.  Perhaps if it is not a false elevation but a true one with both of them, then perhaps I need to see a hematologist not a Neurologist!  I've been taking aspirin daily just in case. It can't hurt right?

I'm banking on that diagnosis.  I dont know if APS can cause unilateral babinski sign, but let's pray that it could.

Oh you ruined my ego by stating that every neuro dictates that in their notes!  I thought I was special! Hahahahaha!

I'm feeling the vibes baby

Lisa

xxoo

[anon07072023]

Your neurologist's report seems pretty thorough. With all that you have going on, I will be shocked if you don't come out of this with a diagnosis of MS.  It just doesn't make sense, you know?  It seems plain as day to me.  The longer they wait, the more "opportunity" for disability to set in. I really hope they make this decision soon and get you started on Copaxone.  

Like the others on here, I still don't see why he's waiting for the neuro-opthalmologist and the urologisit to put in their 2 cents.

I think the "pleasant" part is something they're trained to put in their notes. Every single neuro appt from both of the neuros I've seen put that in their notes each time for me.

Sending you good vibes,
Kelly  

[LisaJF]

Psst...he said I was "most pleasant".  Heh.  That's what stood out for me. LOLOL.

You know I called the Urologist 3 days in a row and no return phone call.  I got the answering service tonight and she was down right nasty.  She told me she would give him the message that I called in wanting the results of my renal U/S.  I called back an hour later asking if she had spoke to him to call me back and she said, "No, I told you and obviously you were not paying attention (which she never said this initially), this is NOT an EMERGENCY, therefore he will get this message on Monday."  I went to tell her that I also feel that I have a UTI and wanted to speak to him as well.  "Well that's considered an emergency, next time you call for future reference is to state what you're calling about in a medical emergency and your phone number.  He doesnt answer for mere test results."  I responded, "Thank you, you're such a pleasant person." (sarcastically and she picked up on it) She replied, "Right.  Thank you."  Then I said, "Phuck U" and hung up the phone.  I never heard back from the Urologist.

[rendean]

Lisa,
You need to run fast from this neuro-opth and trust your PCP to find you another experienced neuro -opth to consult with. Positive Babinski, documented tremors , MRI lesions growing in numbers, decreased sensation and all the ataxia issues.So, where's the diagnosis?

Sounds like your PCP is on top of things and will help you get a solid answer to issues.

Sending good thoughts and hugs,
Ren

[MonkeyMom4]

I have to agree with Pam here....WOW!!

After reading all of that and you not having a diagnosis...mine chances of ever receiving one is slim to none.

What the heck is the problem with them?? do your lesions need to spell out MS, before they can dx this.

I wish you all the best and truly wish there was something I could do to help.

-Kelly

[drsdonthelp]

Wow Lisa!!! I don't know what to say other than....... "HOLY COW, THEY CAN'T MAKE A DIAGNOSIS!!
You have been through so much and they need to stop/slow this before you have more problems..

At least the report didn't make you sound like its "only your head" He wrote the good, the bad and the ugly, (so to speak)  And He at least stated what he did see.

I hope and pray for you Lisa,
xoxo Pam

[LisaJF]

To Everyone:

Thank you for the time you have put forth in your responses.  I greatly appreciate it!

I just got back from my PCP office visit.  She is doing all the blood work I requested and she gave me a referral for a bubble study to r/o PFO.  What more can you ask for in a PCP?

So she made a copy of what my MS Specialist wrote to her (had it in her hand when she walked in).  Amazing huh?

I'll type out some:

"The patient was admitted to XXXXXXXXX XXXXXXXX Hospital (heh) in April of tihs year c/o right upper extremity tremors, headache, fatigue as well as ataxia and left leg paresthesias.  Reportedly on March 17, 2011, she experienced blurry vision involving the right eye that lasted approximately 2.5 weeks.  She was seen in consultation by Dr XXXXXX (heh) who  noted that the patient had an Epstein-Barr infectio two years ago and relapse one year ago, a remote history of bilateral trigeminal neuralgias and thyroiditis.  On examination, Dr. XXXXXX (heh) the patient had decreased sensation in the left face and arm with increased tone in the legs.  She had a bilateral intention tremor, right greater than left with  dysmetria.  A positive Rhomberg and was unable to do tandem.  

The patient also reported sudden episode of diplopia recently.  This occurred as binocular phenomena with both eyes open and was present in each eye individually.  She has not had the onset of myoclonus involving trunk and right upper extremity.

During the XXXXXXXX hospitalization, the patient had a spinal tap, which did not show oligoclonal banding.  IgG index was marginally elevated 3.5 the upper limit of normal being 3.3.  VER was negative.  She had an ophthalmology consult with Dr XXXXXXXXXXXXXXX *heh* who reported that patient had minor refractive area and had presbyopia and probably resolving history of retrobulbar optic neuritis with no evidence of optic nerve swelling or hemorrhage.  

In April of this year during the hospitalization, she had a MRI of the brain, which showed white matter lesions that were nonenhancing and unchanged from he study of 2010.  MRI of the thoracic spine with an without contrast was reported normal.  MRI of the cervical spine was reported normal.  EKG was normal.  MRI of the lumbar spine was unremarkable
other than the right adnexal cyst and hemangioma in the body of S2.  Winthrop reported showing white matter lesions differential diagnosis including MS, prior history of trauma or vasoactive drug ingestion or migraine. MRI of the brain performed in 2008 by XXXXX (heh) reported no significant change compared to 2007 and reidentification of scattered white matter supraatentorial subcortical lesions were noted.  There were no periventricular lesions to suggest demyelinating disease.  MRI of the c spine and t spine in 2008 was unremarkable.  

In April 2011 at XXXX Hospital (heh), the patient had normal CBC, platelet count.  VER and brain stem auditory response was noral.  Sed rate was 9.  Urine protein was 1+.  Coagulation studies were unremarkable.  B12 was 251.  The patient reports she has had the neurologic symptoms when here B12 was within the high normal or mid normal range  Anti double stranded DNA was negative.  Anticardiolipin IgM was elevated at 21.5.  Mycoplasma titers, Lyme, RPR were negative.  Spinal fluid was acellurlar but with a protein of 32.  As noted, IgG index was elevated at 3.5.  Oligoclonal bands were negative.  Negative for celiac screening and cytomegalovirus.  Elevated acute EBV IgM, elevated parvovirus, IgG-IgM ratio, elevated t4 marginally.

Review of symptoms:

Notable for tremor, loss of balance, blurry vision, extreme fatigue, nausea, urinary incontinence and urgency, muscle cramps back pain, weakness, numbness in left leg and memory disturbance.

Physical Examination:
The patient is a fit looking individual wh was mentally clear and clam.  She made no cognitive erros.  Visual fields, fundi, pupillary reponses and eye movements are normal.  She has increased reflexes in the right biceps and a right Babinski response is present.  Sensory examination revealed decreased vibration perception in the left leg and area in proprioception in all of her limbs.  Temperature and sharp perception were normal.  She appeared to have a bilateral intention tremor, right greater than left with times appeared to be myoclonic like jerks.  No significan focal weakness was evident.  The patient walks independently but awkwardly.  She was not able to walk on heels or toes.  She could not tandem.  She fell when Rhomberg was attempted.

Postvoid residual urinary volume of 246 ml was determined in the office testing.

Impression/Plan:

Ms.  XXXXX (heh) has an extremely complex neurologic history.  I reviewed images of her MRIs from 2008 and 2011 and there have been some progression of lesions.  I will see if XXXXXXX Radiology is able to compare her old study to the current one at XXXXXX to see if there has been lesion progression.  The patient is definitely retaining urince.  She is referred to a urologist. I would like her to have urodynamic testing to determine  if this is neurogenic in origin or due to some mechanical problem.

In addition, there is question of optic neuritis and I have referred to a neuro-ophthalmologist.  

I gave her a prescription of provigil because of her overwhelming fatigue.  The patient will be seen in several weeks.  I epxlained that it may not be possible to definitely diagnose MS and an emperic trial of therapy may be initiated.  The patient seemed satisfied but her significant other was unhappy that a definitive diagnosis could not be made at this time.

Thank you for referring this most pleasant and challenging woman for neurologi consultation.  I look forward to working with you.  


That's it :D

[Karen99]

I find your neurologists approach to a diagnosis hinging on other specialists opinions weird. Wimpy comes to mind............While it is a good idea to get your eyes checked out by a neuro-opth and urinary issues checked by a urologist, a diagnosis should not be determined by the results of these tests.  

A neuro-opth CANNOT with any certainty, exclude MS through an exam and MRI.  There is far too much that cannot be seen.  A microscopic lesion on the optic nerve can cause double vision.  Same for the urologist.  In fact, if there is no structural or other signs for the cause of your complaints, it leans towards a possible neurological cause.

The practice of medicine is an INEXACT science.  Trust your gut.

Your story reminds me of my own a year before diagnosis except I did not have a neurologist at the time.  One of my first symptoms was frequent urination.  Time after time I had testing for UTI's - even had a standing order at my local urgent care to stop in and pee in a cup any time.  Even went to a urologists who had no explanation.  I also have a slight hydronephrosis, doesn't mean much.

Then came the problems with color saturation and slight decrease in acquity - none of the testing could pick up what I was experiencing.  But the opthamologist looked me square in the eyes and said he believed what I reported.  Changes in vision can be very subtle. Later my neurologist determined that I had retrobulbular (sp?) optic neuritis.  That is behind the eye and cannot be seen.  Although, later my optic nerve became a bit pale and could be seen by my neurologist.  

Then came the double vision, an MRI and a diagnosis.  You may or may not have MS but your neurologist has to put the pieces together based on MRI, history, and clinical observation.  The opinion of the neuro-opth and urologist CAN be helpful but your neurologist has to think for himself.

Things progressed to half my body being numb, tingling, burning, severe double vision, nerve pain, etc.  Much to my neurologists surprise, my neurological exam was "essentially normal" except for hyper-reflexes which led to a cervical MRI.  A healed lesion was found.

I am glad you have a good PCP.  They can be so helpful.  Good luck with your appointment today.  

[sllowe]

Lisa - I second Ess. I'd not accept it. Get a 2nd opinion on the eyes before you see the specialist if you can.

I have to say, what a wishy-washy neuro! He's a specialist, I don't want to disrespect him, BUT, that's the two things he's holding back on? The uro and the optha's opinions?

If this specialist is thorough, and the optha offered no explanation, then he should have something to surmise from that. At this point all you really have is no explanation to report to the neuro on the eyes. Geesh. Hope reg. doc serves you well today, Chicky. You deserve it.
xoxo
shell

[twopack]

I have more respect for a good PCP than any other specialist.  They are supposed to be lead investigator and coordinator for patients besides directly treating and monitoring our acute and chronic condition care.  Specialists too often send them a kindly consult note of thanks without really CONSULTING.  

I'm glad you are seeing her today Lisa.  Many of us found our strongest supporters in a good CPC watch master willing to refer out until answers came.  I believe they see us more holistically and therefore recognize pathology exists.  

My crusader believer PCP is my rock.  She ordered almost all my testing before I saw the specialists, takes over prescribing tasks when 'allowed' (even pain management lets her do some) and monitors my health as a whole.  It actually cuts down on the number of office visits I have to deal with.

Good luck today.  You probably will need an extra B12 if they pull all that blood!
Mary

[LisaJF]

I agree, although my RBC and H/H count are normal.  I'm going to have her repeat some labs to see what is going on.  I never had a low B12 before, however, it correlates with the decrease in appetite during my passing of kidney stones (twice in a month) secondary to persistent nausea. (especially ketones in the urine).

I have to shower to get ready for the doctor's appointment. What I love about my primary is that she will do anything that I ask.  No ego whatsoever.  It's refreshing after my not so nice experience with the neuro-ophth.

[essdipity]

In all this testing, have they looked into pernicious anemia? Lack of ability to absorb B12 can cause so many MS-like issues. This generally is not a congenital condition, but develops over time.

I really thought that was what's wrong with me, since my grandmother had that disease and ultimately died of it. But thorough testing twice (not just blood) rule it out for me.

Anyway, just a thought.

ess

[LisaJF]

@ COBOB:  Thank you for your input.  I trust your assessment and thoughts on this matter completely. I have no choice but to wait and see what the MS Specialist surmises after this visit, although I am going to have a second opinion.  You don't have vertical diplopia in one eye for two months for no reason (which that Neuro-ophthalmologist offered no explanation other than, "I don't know why, most likely it will go away."

@Ess:  Thank you for taking the time to respond.  I promise I won't take the Neuro-ophth's summation as "gold".  I do not think my MS Specialist sent me there to get a diagnosis, but an explanation of why I have diplopia.  He did not offer a thing other than everything is "normal".

I will be getting a second opinion.  Today I go to the primary doctor's office and she is going to give me a new Neuro-ophth and Urologist (since the first Uro did not even call me back after two days with my renal U/S results).  I'm also going to ask her to repeat the ANA, antiDSdna, anticardiolipin (aPL), LA (lupus anticoagulant) (to r/o APS), HTLV I/II (I doubt I have it but I want to test it anyways), HIV, Lipid profile (have elevated triglycerides), EBV (since my myalgia returned last week), Thyroid, Vit B12 (in hospital I was 251 (was 398 in Nov) -- which can alienate my neurosensory and motor symptoms), Vit D, UA and C+S with cytology (since I've been having microscopic hematuria and proteinuria), etc.  and finally a bubble study to rule out PFO (I think she will do it since I have a history of congenital disorders).  

@Julie:  Thank you for taking the time to write to me.  You're right, it was "rude" to dictate in front of me and for him to increase his tone and loudness of his voice when he got to the part, "It is not a dymyelinating disease but an ischemic disease".  Any doctor who dismisses years of neurosensory and neuromotor issues is not worth listening to at this point.  I will keep truckin' until I am satisfied that a Neuro's assessment was thorough and offers a viable explanation of my symptoms.  

@Sidesteps: Thank you for your post. I believe you are experiencing binocular diplopia (could be wrong) but due to ocular misalignment and I think they have to assess whether it is horizontal or vertical and if its transient or persistent.  I know mine is occasional, happens more if I'm extremely tired.  I hope you can find out what is wrong and an explanation.

Thank you all again!

[Sidesteps]

Hmm --- one thing I've learned about doctors? They are either really good or really bad and unforunately the "bad" comes in more varieties than the "good."

Separate note: We are in the same boat. I supposedly have no structural issues or neurological issues (they just said all my tests and VEP is normal) and have diplopia. I have diplopia in both eyes and it's noticeable with both eyes open and each eye closed.

My question? I'd like to know how it's possible to have better than perfect vision, get sick, then all the sudden all these symptoms ocurr. Being dismissed is the worst. Glad your primary saw that and is moving you forward with someone else.

[Sarahsmom46]

He sure was cocky, showing off to with doing his dictation right in front of you.  I am not one of t hose people that want it done in front of me.  In my opinion that was very unprofessional and took up my time being able to ask questions or whatever.  He can dictate on his own time and in the privacy of an office - not the exam room.  

About the Ischemic lesions - if you don't have risk factors for them, then MS should still stay in your differential diagnosis.  You are 47 and that is what that neruo was probably thinking.  "She's in her 40s so it can't be MS" stupid thinking like that.  I was an atypical case having been diagnosed when I was 47.  My case became more typical as time went by and more lesions appeared.  

Like others have mentioned, wait to see what the MS neuro says.  It is his opinion that matters.  If you still feel that the response is not adequate to settle your intuition then go get a second opinion.  No one cares about or knows your body better than you.  Again, trust your gut feelings.

Good-luck.

Julie

[essdipity]

Hi. To answer your question directly, if I were in your shoes, I would NOT just accept this doctor's opinion and let it all go.

I am one whose lesions were dismissed as ischemic for many years. Hah.. It is 'easier' if MRI abnormalities are 'typical' but many MSers are not typical. And you are quite young to be having ischemia anyway. It does happen, but not often.

This does nothing to explain your symptoms, regardless of what the neuro-ophtho thinks. I urge you to continue to pursue this vigorously.

ess

[COBOB]

Keep in mide that a Neuro-Ophthalmologist is not an MS Specialist.  A Neuro-Ophthalmologist is a sub-specialty of Neurology.  He is a General Neurologist with sub-specialty training in Ophthalmology and Neurovision issues.  He is rendering his opinion.  Most Neuro-Ophthalmologist read lots of MRIs (Optic Tracts, Optic Chiasm, Optic Nerves, orbits, etc.)  They are very familiar with neuroanatomy.

Wait to see what the MS Specialist says.  You could very well be one of those "atypical" presentations.

Bob

[LisaJF]

Thank you all for responding.

I just spoke to my Primary doctor and told her about my left arm going numb intermittently for 4 days now, then proceeded to tell her about my experience at the Neuro-ophthalmologist.

She is going to refer me to someone else to get a second opinion in regard to my right eye diplopia.  

I am waiting for the MS Specialist to call me back on the left arm paresthesias.  I informed the nurse at the office that I just wanted it charted, but she said it is important to let him know since its been four days.  So that's that.

My urologist never returned my calls in two days to give me the results of the kidney U/S although I already know what it was since the tech told me but I wanted to hear it from "him".  I don't think I'll be going back to him at all.

[MonkeyMom4]

I say keep going until EVERY single symptom you have can be explained in length to you!

I'm sure your (young) N.O. seemed to say what he was saying with conviction, but he was most likely spitting out crap he read in a textbook. No offense to young docs, they have to start somewhere, but they don't have the history as someone who's being do their job for decades and have seen more.

That's why they call it PRACTICING medicine.

Keep searching....we'll be here for you!!!

-Kelly

[cainer]

I was told exactly the same thing!! ischemic!!  guess its real close, i dont know but in time they will know for sure!!  hugs!  cainer