How should I choose my doctor?

[ShakinThingzUp]

I have been to my General Practioner, a Neurologist, a Physiologist, a Neurosurgeon and the Opthalmologist.....
I've had an MRI (without contrast) of the head, neck cervical and lumbar spine.
I've had an EMG of my wrists and my left leg.

So far, all of the doctors that I have seen seem to indicate they believe I am in EARLY stages of MS.  ALL of them state that there is no evidence to suggest anything that might be causing my symptoms at this time.  Each has gone over the possibilities based on my symptoms and given their opinion on what it MIGHT be.... We keep coming back to MS, but without a diagnosis because there is no clinical evidence.

Today I saw the Neurosurgeon for what I am assuming will be the last time.  After reading all the results of the tests I've had thus far, he is recommending I go back to the Neurologist, and recommending to him that he send me for the MRI (with contrast).  (I was to claustrophobic when originally sent to complete this test - they may need to put me out or give me something to calm my nerves first).

I have many of the symptoms, but the results on my MRI's thus far do not confirm MS........ From what I am reading online, what my MRI's DO confirm may make diagnosis more difficult (Spinal stenosis, Spondylosis, Spina Bifida Occulta, etc)

I am growing tired of the yo-yo game from one doctor to testing, back to the doctor, then to another doctor, then another test, then back to the first doctor ------------ and so on.

The pain is daily.  The numbness is daily.  The shaking, weakness, etc. all of this is every day.  I am 34 with three children, including one toddler, AND a full time job.  If I can't work, we can't survive.  We are a two income family.  They keep asking me if I'm working, as if this indicates somehow that my pain isn't all that bad because I'm able to work......  They don't understand that I HAVE to work.  I refuse to go down and attempt to collect disability especially when I don't even have a diagnosis!!  Pain or not, I have to work!

(sorry for the rant)

Please tell me.......... is there anything I can do - what tests should I request?  Should I try to find an MS specialist now to rule it out or go back to the Neuro I've already seen?  He's very nice and I did like him...... I just don't want any more yo-yo appointments and testing.  I want to know something and get some help for whatever is causing this!!  

I feel like no one wants to diagnose MS when its not clear on the tests (understandable) but they all THINK its MS, so they don't want to do anything else, they want me to just WAIT until it gets worse!

Please.......... any advice?

Thank you in advance & God Bless!
Amy

[crwstar]

Hi - You might consider going to a Neurologist who specializes in MS since everyone you've seen thinks you are in early stages.  I had a neurologist who specialized in MS as my first specialist ( I don't have MS ) but I had a tumor and an anuerysm. These were not her area and I found that she wasn't expedient at suggesting I go see people who could help me. After lots of research I found that I needed a neurologist who knew about epilepsy cause I think I am having seizures and I found the care to be much more to the point and they were able to recognize symptoms I mentioned. It streamlined my care and made my appt go really well. Find a doctor who specializes in what you think you have - get one reccomended to you if you can.

Take care - Ultimately I hope you don't have MS but if you do I pray you are surrounded by people who can support you through every stage.

[DrNoopurMD]

Hi,

MS is very difficult to diagnose as it is a very varied disease. The process of diagnosis causes a lot of anxiety and distress as you are experiencing right now. Usually the diagnosis is based on the following criteria:
Presence of two or more lesions in the brain
Two or more episodes of neurological deficits each lasting for 24 hrs not more than one month apart
Objective evidence of a disease of spinal cord or brain.
Presence of CSF abnormalities on lumbar puncture.

I would suggest you to find a MS specialist in your are and consult him and please remember to take all your reports with you. Let me know if you need more information and keep us posted.

[ShakinThingzUp]

Thank you for the response.  
I have had the 2 episodes, less than one month apart.  I've also had a "relapse" since the first time I had these problems was in 2002/2003 for about a year........ then I had a few years of feeling pretty healthy.
In late 2007 the same health problems I had before surfaced - but worse.  They seem to be increasingly getting worse as the months wear on.

The eye doctor said he believed I had optic neuritis this past March, however he could not see it - he diagnosed based on my symptoms and the eye redness & irritation, etc.  Those symptoms did go away with some time (about 4 weeks) further backing up his beliefs.

My spinal cord is "eaten up" with degenerative disc disease....  spondylosis, stenosis and of course the defect since birth (spina bifida occulta) but nothing is bad enough to cause the problems I'm having (per the neurosurgeon and the physiologist).  Not to mention the worst of my back problems are only in my lower back which does not account for the problems in my upper limbs.

I have not yet had a lumbar puncture.  (I'm honestly scared of it because I had a CSF leak from an epidural in 2003 - the last time I had problems).  

I have not yet had an MRI with contrast.

They did not find anything more than plaques on my brain - it looked fine.

So, I guess it looks like I may be on to two more tests, probably spaced apart... but the pain last night was nearly unbearable.  It was much worse than the "daily" pain that I have...  Today I feel weak as if it took so much out of me.

While I wait to hear from my Neuro, I'm going to see what I can find out about a specialist nearby...

Thank you for your time.
God Bless!
Amy

[edub2876]

This sounds very similar to what I'm experiencing except the doctors are saying it's not MS because there is no medical evidence.  I have not had the lumbar puncture or the MRI with contrast, but I have had a visual evoked response test for optic neuritis, but that was negative.  My PCP and neurologist are basically finished with me, because my MRIs of my head, neck, and back are all normal, but I'm obviously not fine with this.  I went to an orthopaedic doctor to look at my leg, because everything else had stopped.  Now my arm has started up again!  I have had a nerve conduction test, which showed evidence of demyelination in the sensory neurons in my foot, and an EMR which showed some abnormalities in my tibia.  This process has made me really anxious, because I have two young children.  I can sympathize with you, because right now I am stuck also.

[ShakinThingzUp]

It seems that each time I have an "episode" which for me seems to last a few days and then leave residual effects which last for weeks, that it gets worse....

The one this past Sunday night was horrendous & I have begun to have more problems in the last two days which I suppose are related to that shooting pain episode Sunday night (weakness, soreness, sort of residual shooting pains occasionally & today my eye has started twitching again - first time since early April).  I'm praying that I'm not headed for another optic neuritis bout because that eye pain would bring me to my knees....and would come out of no where for several days off and on)

I'm hoping that my MRI with contrast shows something so that they can help me.  My Neuro that I've been seeing has said they would do this test depending on my EMG results.  I should speak to the Neuro sometime this week.  

It's bad when you hope for something to show on your MRI........ and I don't think anyone who is not in our shoes would understand that.  But, I spend a lot of time praying they'll find SOMETHING, so they'll know how to help me.

May God bless you,
Amy

[patsy10]

I say go right for the MS specialist.  Don't waste any more time.  I saw 5 neurologists. The last one being an MS specialist.  I don't have MS according to all of them.  They all said "based on normal test results" I don't have it.  I was convinced it was MS and it wasn't.  There are other disease that mimick MS such as lyme disease.  An MS specialist s