Quixotic1 please read

[dowma]

Not sure if you have time to respond to my question from 6/9 regarding the VEEG?  I'm really at a loss and can use some guidance.  Thanks.

[Quixotic1]

No, I do not think the EEG as reported could be responsible for your symptoms.

You have episodes of persisting symptoms

07/06  Chest pain, R arm paresthesias x 3 weeks

Episode of dizziness, loss of balance with brain fog x several weeks

09/06 MRI (without contrast) shows two lesions on FLAIR sequence frontal lobe

Gait problems - with hyperreflexia, spasticty in R LE

Increased motor difficulties/weakness - Dx viral syndrome & anxiety???????

10/06 Paresthesias which progressed to include all extremities, severe fatigue

MRI C-spine, lumbar-spine (Don't you remember whether they brought you out of the machine and injected the contrast?) "normal"

Lab workup for myelopathy - could you get those results for completeness? neg

Spinal tap - Did they do a complete MS panel on it?  Can you get the report?

01/07 - Relapse of all symptoms, EMG neg, Increased fatigue, muscle crampy pain

01/07 2nd MRI of brain with contrast increase (in size or number??) FLAIR lesions

01/07 EEG & VEEG - mildly abnormal (I gather they have not labeled it "seizure disorder"

03/07  Rheumatology workup -neg (neg for what?  What did they look for?)

Current - Severely fatigued, reduced exercise intolerance, muscle pain

Well, much of your history parallels my own.  FLAIR sequence is especially good at identifying MS lesions.  In the face of documented physical neurological findings (weakness, hyperreactive reflexes, spasticity) I do not understand how they can dismiss the frontal lobe lesions as inconsequential!!  I had only one frontal lobe lesion and when I saw the right neuro, he thought it was very significant!!  (Incidentally, so MS researchers have linked the severe fatigue to frontal lobe lesions)

Do you still have the reflexes and spasticty?  Is your gait severely affected?

Do you have any reaction to becoming overheated?  Hot bath, shower, weather?

If the blood work up was complete and truly negative, I don't see how they have ruled out MS.  Period.  Also, any MRI's that were done without contrast are suspect in my view.  If they are stictly adhering to "number of lesions on MRI" to make the diagnosis, then I think you have a rigidly thinking neuro who is going to miss a lot of MS!  Physical deficits count as lesions!!!!  So do reported relapses!!!!  It's all a matter of dissemination in time and space.  Damage occuring at different times (not all at once) and in different areas of the body/brain.

I think you need to do a couple of things.

Collect all of your medical records - all of them, including copies (on disk if possible) all imaging tests and the reports.  Unless you are "tied to NYU" by your insurance or employment, find another MS clinic.  I'm sure New York is riddled with them.  Write up a chronology similar to the one I did above, but more complete.  Keep things short and to the point.  Separate paragraphs for each symptom/test/problem.  When you have all your records, read them carefully.  I would be glad to go over things with you.  When the timeline is complete and readable see a new MS specialist.  I think it is ridiculous for a neuro to say "well it's not XXX." and then leave it at that.  It's their job to find out what it is.  You need to keep asking, If it isn't MS then what IS it??

One thing that helped me IMMENSELY.  My MS neuro ordered intensive physical therapy for me with a PT experienced in MS.  She knew immediately it was MS (she couldn't say so in so many words, but it was clear).  She also cleaned up my gait and made walking so much easier.  I was out of breath just walking into the store from close in the parking lot.  She also had me fitted with a brace.  Maybe your PCP could order some neurologic PT for you.

I hope this helps.  Quix

You may need interval MRI's (with contrast) and they should include cervical and thoracic spine.  Request that they be done on a new 3 Tesla MRI machine.

[dowma]

Thanks for the reply: Here is my history.  I'm 41 y.o female, healthy no past medical history.  7/06 developed right sided chest pain with numbness and tingling right arm for 3 weeks.  Had cardiac w/u normal.  Then immediately following developed dizziness where I felt as if I was swaying and in a "fog" not the room, that lasted for several weeks, no relief.  Saw PMD r/o BPV saw ENT and Ophto. all exams normal finally saw neurologist had 1sr MRI of brain 9/06 no contrast: showed 2 small right frontal flair lesions,he said common not to worry.  Within days developed feeling of weakness in right leg, was actually tripping over my own foot and had difficulty walking. My neuro: exam at that time showed hyperreflexia bilat. lower extremeties, which I believe I had for some time and some spaciticity in the right lower extremetiy.  Few days later was unable to get up from chair while at work had difficulty breathing, brought to ED, neuro: exam the same, the neurologist said likely viral syndrome and anxiety what a laught.  Spent 3 days as inpatient.  10/06 developed parasthesia in right  arm as well as right leg that then progressed to bilat. lower extrem and right arm.  Feeling of fatigue, "spacy" heaviness sensation in arm and both legs.  Went for second opinion different neurologist had MRI c-spine and lumbar spine unsure about contrast but showed no lesions just degenerative changes.  Symptoms continued no relief, again no visual changes occasional burning around right eye felt circumferential.  Persisted had every lab test imaginable including lyme titre which was all negative. Had spinal tap 11/06 negative.  The month of December asymptomatic what a suprise thought it was over but it wasn't.  1/07 reoccurance of all same symptoms which were slightly worse. EMG done it was normal. Increase fatigue muscle pain felt like "cramping" 2nd MRI of brain 1/29/07, with contrast possible increase in flair lessions although they may have been present initally because 1st test no contrast.  Had EEG 1/07 r/o seizure dissorder because felt vibrations and occasional muscle twitching (not visible) showed runs of sharp waves, decrease in theza waves.  Saw Director of MS Clinic at NYU: did not think clinically or diagnostically I have MS.  Seen by rheumatologist all tests negative 3/07 2nd EMG at NYU: normal.  Saw neurologist at NYU had 5 day VEEG 4/5/07-4/10/07 no seizures but same as above and right temporal cortical hyperexcitability. Here I am not any better, my muscles feel painful and heavey feels like it is effecting my hands and fingertips, sometimes difficulty grasping due to pain.  Feel fatigue more from movement which is now causing me shortness of breath, difficulty standing for long periods of time and walking long distance.  No answers from anyone.  Neuro at NYU has cancelled my apt 2-3 times now cant see me until mid July.  I dont even know if he has an answer Im so frustrated, angry and sick of all this.  I am a physician assistant so I am familiar with all this but dont know what I have.  Thanks for listening and all your insight.  MB (dowma)

[Quixotic1]

I'm sorry I missed your response.  Certainly dysfunction  in the temporal region can give "spacey" "out of body" and weird mental state feelings.  These are usually quite brief if they are what is know as partial seizures.  The more diffuse findings will have to be interpreted by your neurologist.  

Were the MRI and LP done last year?  Certainly in the presence of neurological findings, a "nonspecific" lesion on MRI should not be discounted.  Were both the brain and spin scans done with contrast?  Are you having persistent or new problems ?  Fatigue, heat intolerance, weakness, other sites of "funny feeling" like numbness, tingling, vibration, visual problems?

Was your neurologic exam normal?  Did the neuro doc seem interested and very thorough?

I ask, because, from what you have stated, MS has NOT been ruled out.  In the presence of persistent symptoms the MRI's need to be repeated with contrast periodically.  A year is a very long interval.  Approximately one third of people with MS will have abnormal EEG's.

Note I am not diagnosing MS, nor any other disease, but your symptoms are real and they are suggestive.  When I first presented with weakness and hyperreflexes I had a "normal" MRI with a "nonspecific and insignificant" UBO (unidentified bright object)  My neuro didn't even want to do the LP after I developed urinary problems!  One year lost.

Long story short - more symptoms - exam by an MS specialist - UBO=MS plaque - newest MRI - spine (cervical and thoracic) loaded with lesions.   I have MS.

The LP is sometimes negative early in the disease.  About 5% of people with proven MS will never have a postive LP.  Most MS specialists believe that many/most of the lesions in MS patients are still invisble to current MRI technology.

You need to be proactive in pursuing your diagnosis, whatever it is.   If your neuro feels that one set of images effectively and forever rules out MS, then you need a a different neuro.  He is uninformed. The abnormal EEG, in my mind, may stand alone as a problem, but it really does not explain your weakness (severe fatigue in your arms) nor the paresthesias.

I reiterate: I am NOT saying you have MS.  But you have something (you know something is wrong or you wouldn't be here on the forum asking questions and follow up questions.)

Why don't you write a longer post and make a timeline of all the symptoms and problems you have had, how long they lasted and when the work up was done?

Good luck, Quix