interested in Quixotic1's opinion

[Nanners123]

I posted this on the forum that the doctor responds to and provide it again for background:

"For the last six months I have been given several tests for the purpose of ruling out MS. I have had various symptoms that may be consistent with MS for several years, however, never thought much about them as they woud occur and remit in cycles a couple times a year. Most recently, I went to the ENT because of severe shooting pains in my right ear that would wake me up in the middle of the night. Also, for the past year my arms and mostly hands would go numb and tingle in the middle of the night causing to me wake several times. The ENT happen to give me a paper to fill out asking about dizziness. I just so happen to have had one of my severe attacks weeks earlier so was able to describe in detail my symtoms. He sent me for ENG and other tests. The other tests were normal but the ENG indicated my ear pain may be centrally caused. I then began the workup with neurologist. I have had MRI of Brain w/wo (Normal), MRI of lower Lumbar w/wo (Normal but tiny herniation T3-4), , VEP X2 six months apart (both indicating abmormality in left eye),Blood test for Lymes (Normal), ANA/SED rate (Normal), Lumbar puncture (Normal). Five days after Lumbar puncture I expeienced localized numbness & pain in left thigh. EMG's show carpal tunnel. EMG two years ago showed Carpal tunnel in left wrist only now both. I searched the internet for Carpal tunnel and MS and came across a study which seemed to indicate that Carpal Tunnel may mask MS. Can you tell me more about that? Also, should I be looking to have any other tests due to abnormal ENG and VEP?"

Since this time, I began writing symptoms down on a paper and dating them for the doctor. I have had several follow-ups with docs since this time and have learned the the abnormal VEP's are due to lazy eye. I have had episcleritis diagnosed a month ago. Every time I go to the Neuro for answers to questions about newly articulated symptoms, he has no answers or suggestions, just says come back in six weeks. He did prescribe me Lyrica for the localized numbness and pain in my left thigh. I noticed this helped significantly with the numbness and tingling in the hands and arms at night. He does not explain why this might be.

I was diagnosed with Carpal Tunnel in both wrists, but have told the doctor that the numbness also occurs in the ring and pinky finger which is consistent with ulnar nerve entrapment. I have asked him if there could be something wrong in my neck that is causing all the nerve entrapments, he said come back in six weeks. I have frequent kinks in my neck, severe pain and stiffness that lasts a few days and then gets somewhat better.  When I cross my legs, my toe goes numb. When I exert myself, my muscles burn and feel extremely fatigued. I cannot open jars easily if at all any more. I often will loose my balance but catch myself before falling. I have shooting pains in neck, legs and back.

I still cannot get an answer as to why my ENG would come back abnormal indicating, rightward tracking, left beating nystagmus in head right postion with eyes closed up to 4 degrees/second. Summary states ENG abnormal today. Abnormal tracking and non-classic Hallpke suggest a central finding.

I have had various symptoms that sound like MS, Lymes or some other systemic nerve problem. How do I get doctors to look comprehensively at the list of my symptoms. I now cannot cross my ring finger over my pinky and am afraid that I will soon have more permanent damage if not properly diagnosed.

Any assistance you can provide will be greatly appreciated.

[Want to feel well!!!]

Hi...Quix told me how to formulate a time line in a post from today.  I too wanted a more comprehensive format.  That posting could help you with your “list.”

Good luck!!!
  

[Quixotic1]

Hi, welcome to the forum.  The doc is so far behind over there you'll get to sit with our answers for a while until we get the real story from the neuro.

Lazy Eye has it's roots in childhood.  When one eye constantly deviates the brain gets two different visions (views) of what the person is trying to look at.  The visual part of the brain will not tolerate this and figures out which eye is give the correct information.  The brain will then begin to ignore the input fromthe eye that gives the erroneous view.  Eventually that eye goes partially or completely blind.

So, have you always known that you had a lazy eye?  Has the vision in that eye always been worse?  If so, we can ignore that VEP.  However, if that appears to be a "new" problem then I might worry about a condition conditon called "internuclear ophthalmoplegia" which causes one or both eyes to not swing toward the ear on it's side.  What I don't know is if this condition would cause over a prolonged time would cause an abnormal VEP.  Typically the VEP is MS is abnormal because of a form of optic neuritis.

Episcleritis is not typical of MS, but can be seen in some of the other autoimmune diseases.

I don't know how to dissect exactly how ENG's cause the nystagmus - that is a lesion where causes nystagmus in this or that position.  Though, typically positional nystagmus will indicate a peripheral lesion (in the inner ear) and thus not be typical of MS.  But you said the impression was that the problem with your dizziness was central.  This probably refers to the test you did sitting up following the horizontal and vertical lights.  There are two parts Optokinetic Tracking and Smooth Pursuit.  When both are abnormal it does indicate a central lesion, which would indicate a brain lesion and MS is one of the causes.

There isn't a great deal of additional testing available to tease out what maight be going on with your dizziness and abnormal ENG.  But there is one test that might help.  It's called "Computerized Posturography" and analyzes your ability to maintain your balance under different circumstances.  You might want to get a second opinion from a Neurology subspecialist called a neuro-otologist.  This docs deal specifically with vestibular disorders and have quite elaborate testing capabilities.  My MS neuro doc is also a neuro-otologist which is great because I have both MS and separate Autoimmune Vertigo.  You can find a neuro-otologist by going to the VEstibular Disorders Assoication of America (VEDA) website and searching for a provider near you.  This is a great site with lots of info.

http://www.vestibular.org/find-medical-help/search-by-region.php

MRI of the brain was normal, but to rule out MS the c-spine and T-spine should also be done with and without contrast is MS is suspected.

Carpal Tunnel is a fairly common problem and a person may have tingling from MS lesions, but also have compression neuropathy from CTS.  The CTS will be blamed for the problem and it won't be considered as a clue to look for MS.  I did a very quick look and found that the ulnar nerve may also be symptomatic in as many as one third of people with CTS.  So that finding doesn't give a lot of info as to whether something to do with MS is being missed.   Numbness and tingling occurring at night I believe, is quite characteristic of CTS. Here's a link:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=4045154&dopt=Abstract

Lyrica is often helpful for neuropathic pain no  matter what the cause of the neuropathy is - compression, primary nerve disease.

Your neck symptoms sound more musculo-skeletal than MS-like to me.  I don't know about the shooting pains.

The toe going numb with crossed legs is a very common problem which appears usually in adulthood and is not particularly suggestive of MS.

I gather the fatigue on exertion is out of proportion in your mind to the physical condition you are in.  Fatigue is quite non-specific, but I would include it if I were suspecting MS on other grounds.

So the parts of your problems that rang a bell for me were the central vertigo and maybe adult-onset lazy eye (depending on your answers to those questions), possibly fatigue, lack of MRI imaging of spine, and, just overall, the fact that we are needing to explain a lot of nerve-related problems.

It may be time (especially from the tone of your post) to gather up all your info and seek a second opinion from a neurologist.

Was this helpful?  Quix

[Nanners123]

Thanks for the comprehensive reply. This was very helpful. I will look into a neuro-otologist opinion.  I will continue to look into getting more testing and second opinions. Thanks for all your expertise.

I have had a lazy eye since birth and have two eye operations. In fact when I went for the VEP's I told the technician that I do not use my left eye. Both times they did not indicate that will cause the test to be abnormal. It was not until I went to the neuro-opthalmalogist that I found this out.

I was searching on the web several months ago and one website gave several tests that neurologists do to look into abnormalities related to dizziness and vertigo.One of the tests said to stand with arms in front of you, close your eyes and march in place counting to 100. People without any disabilities should remain straight ahead. When I did this I rotated about 180 degrees to the left. The website said this is indicative of something, however, I am not sure what. I did tell the neurologist about this and asked if he was familiar with the test and he was evasive. I guess I get intimidated and am not assertive enough to get further detail in answers. I will have to work on this. Perhaps writing down my questions will help.

I had my whole family do the same test and I was the only one who rotated while marching. This tells me something is going on and I just don't know how much I should make of these things.

Thanks so much for your helpful information!!!

[Quixotic1]

The testing you describe (closed eyes and marching in place) would show a problem with the balance system, but it would not be useful, I don't think, to determine the site of the problem - the inner ear vs. the brainstem.  It is a yes/no answer to "Is there a problem in the patient's perception of space?"

You lazy eye accounts for the +VEP and we would not be able to countit as an indecator of MS.

I still think and ENG vestibular test might be helpful.

Quix

[Nanners123]

Thanks for the help. I go back to the neuro in 4 weeks and will talk with him about a referral to a neuro-otologist. I look into the link you posted and there is a DO/Phd not too far from me.

I am also going to inquire more into the nerve entrapment disorders.  Take care of you!!

N