Are you in Limbo? Here is what to Ask and Tell Your Doctor

It's too bad you don't have a medical degree in Neurology, your office would be packed. Someone undergoing symptoms of unknown origin would do well, I know I would, to print out your suggestions of how to approach learning what is wrong and dealing with medical professionals.

There are other illnesses which defy discovery for a long time, the cause for some, not at all. Still, there is some satisfaction in learning what you have, if not the why. I have sat in a doctor's office, my mind searching for what I should ask; making some check list from this and some previous articles of yours will help.

I had my first noticeable symptoms in 2002, but the MRI was completely normal. After a 30-day regimen of Neurontin, the syptoms went away.

In May of 2008, I had a bad flare that led to my MS diagnosis. The MRI that time lit up like a Christmas tree!

However, I was fortunate in that I had no episodes in the six years between flares and I was diagnosed by only an MRI, not a lumbar puncture. I think it was pretty clear since my mom also has MS.

You are your best advocate!

Peace,

Kelley

I suppose considering the complexity of the human body,  we should not be so surprised that a diagnosis of MS would be difficult in many instances.  And Doctors want to be as sure as possible.  Still, for those in limbo, as you describe it,  the waiting and wondering makes it hard to even think of other things.  But it is good to know at least that others have been through it.  Its really bad when you think you're the only one out there.  Thank you for the wonderful advice, and too, for just being here with your wonderful insights.

One thing that is apparent with each of of your articles is you do extensive research on each topic, which enables the reader to see into angles they might not have noticed otherwise.

Great job!

I went to the hospital in January for blurred vision, severe headaches (much worse than my every day headaches), tremor in my right hand, dizziness, and weakness in my right side of my body.  My MRI/MRA showed spots in the "white matter" and "demyelination: was writen many time in my report.  I was there for 4 days and MS was suspected.  I went to a neurologist and he was very "hurried" and unwilling to let me talk (he was about to retire the following week).  He did not suspect MS, but said he was not sure.  He did not do any tests on me.  He also said that I might have much pressure on my brain - hydrocephelus.  So my physician referred me to another neurologist.  I guess now this is a waiting game.  I should find out more at the end of March.  Anyway, your "Limbo" article was very good and gave me the courage to be "patient".  I thank you for the information and look forward to hearing from you in the future.  Sincerely, Linda

Thank you so much for this article!  I am very encouraged that someone understands the being in "limbo"!  Back in Sept. '08 I went to a "spind" doctor, because I thought I had back trouble.  I had numbness on the left side of my head/face and numbness in my right arm and right leg.   Upon x-raying my back we discovered that I needed neck surgery!  Two of my discs were pinching my spinal cord to where no spinal fluid was getting by.  Nov.'08, I had cervical spine surgery.  It went very well, but my recovery is not progressing any further.  There seems to be a "neurological/muscular" problem.  I keep going backwards with my therapy.  January I went to a neurologist with all my symptoms.  Had EEG, EMG, MRI w/contrast, and some bloodwork.  I "know" about the months of waiting to meet about the tests!  Why does it take so long?!!!!  The waiting is so hard.  I have this sinking feeling that when I meet this March 30th about the test results that he is going to tell me that he still cannot tell me if I have MS or not.  I am unsure what to do if that happens. 

I have had to stop my physical therapy for my neck, because of the lack of progress.  Our insurance has a limit on how much they spend per person per year, so I thought I would "save" my last four visits for when we know what is going on with me, so that we will have some frame of reference to work from.  However, since I have been out of therapy I have gone down hill with the use of my shoulders and neck!  I didn't expect that!  The therapy, at least, seemed to maintain the good use of my neck.

Do you have any advice for me?  Thanks.

Sincerely,

Carol Pauley

fourpauleys@gmail.com