New to the board - please share opinions

[ashleyPT]

Hi everyone,
I've been looking for a place to share my frustrations, learn from others, and brainstorm and it seems this is a good start.

I have symptoms of left leg and arm weakness, visible muscle twitching, extreme fatigue, pin ***** and temperature loss and numbness/tingling in my left leg, my left foot bounces sometimes, and I have episodes of blurry or double vision.  I have left foot drop and wear and AFO.  I seem to have a low tolerance to heat with increasing symptoms whether it's the sun, hot water, or activity. I've had 4 occasions over the past 3 years where my symptoms get significantly worse for a period of a few days to a few months and then periods of recovery where things improve, but never return to where they were.  3 episodes were in the summer months and one was after I had a fever.  I've been seen by a few neurologists and they all have wildly varying opinions.  I've been moving around a lot over the past 3 years with school internships and then starting a new job, so each new city brings new doctors and not very consistent care.

I've had 2 MRI's of my brain and spinal cord, blood work, nerve conduction and EMGs, and a lumbar puncture all come back normal.  

But, I had a sensory evoked potential test return abnormal for my left leg - the signal becomes absent in the cortex, but the doctors don't seem to know where to go with it.  One doctor did see me in the ER after I lost temperature sensation and said I had increased tone in my left ankle and eye tracking discrepancies. But today I was told by a new neurologist that there is no organic reason for my symptoms and they are due to stress.  

I feel a little lost right now.  Any thoughts?  I am a physical therapist and have many patients that go years having symptoms without MRI lesions, but the doctors seem to have no idea what I'm talking about.  I'm not trying to diagnose myself, and am open to any ideas, but my patients with MS seem to have radar for me and I am fitting into many of their stories.  I would love to hear your opinions.

[ashleyPT]

Yes I have all of my testing and records and try to keep all new symptoms and changes written down although sometimes I forget.  This doctor also told me that if my evoked potential testing was coming back absent in the cortex that I wouldn't be able to move at all.  I know this isn't true since evoked potentials are testing sensory and not motor, so I think he just kind of didn't know what was going on.  I did bring up that if he thinks it's in my head shouldn't he be sending me to a psychiatrist, but then he dropped it.

[sllowe]

Hi Ashley,

Welcome! My gosh, I see why you feel you have no where to turn.  Did the Dr. say that "stress" caused your foot drop? I've not heard that one on here yet, though many of us were told we had "stress" myself included.

I was dx'd in 07 with MS, and was one of the lucky ones who only had a short ride to dx.

Since you've been to a handful of Drs in different states, etc., were you able to keep records of your testing? MRIs, labs, etc?  

Sorry this Dr. has found no "organic" reason.

Do you have a timeline of events and testing? I think it would be a good start.

Looking forward to being here w/you through this, and hope you like it here.
ttys,
Shell

[Spuk]

You have certainly come to the right place - this forum will make you feel very welcome. Personally from my view your symptoms can be many dfferent things, only a doctor can diagnose-but the friends here are great sounding boards for more information and knowledge you may not have thought of..
FYI, I went with a few similar symptoms for five years before they found a real diagnosis, so please dont give up hope on that deal. Persistance and finding a great neuro possible is the secret to real help.
Of course you can always voice your opinion and tell us how you are here in the forum.  Some of the kindest most decent people I know are in this forum.
I hope you find solution and help to your problems very soon and best wishes.