Recurring symptoms for 40 years and no diagnosis

[foamyglass]

Over the years I have experience a recurring illness which is becoming worse: * In 1969 (6 yrs old) I lost vision in my left eye and experienced headaches. My mother said I returned from school "not walking right" Admitted to Hospital for Sick Children in Toronto for a suspected brain tumor and was released with no positive findings. The symptoms disappeared after a week.  * In 1986 I could barely walk from fatigue and because my blood pressure kept crashing.  I was found to have elevated titers for the Epstein-Barr virus, slight liver dysfunction and was diagnosed with CFS. It took 10 months to fully recover. * In 1998 same symptoms but worse as my blood pressure dropped when I was sitting and I had severe chest pain.  I underwent the tilt-table test at John Hopkins Hospital and was diagnosed with postural orthostatic tachycardia syndrome and neurally mediated hypotension.  It took 6 months to fully recover. * In 2005 I had a concussion which launched symptoms as above plus headaches for 3 months and included a hypersensitivity to light and movements. * In 2006 I was diagnosed with migraines with aura * August 2008 I became sick again.  Again I couldn't stand, chest pain, migraines, aura.  MRI (T2) showed .8cm focus in upper left frontal lobe within subcortiol white matter.  CT of lungs showed 2 lesions in right lower lungs.  Although this recurrence is improving as my orthostatic intolerance better and I am rarely in a wheelchair the daily  intermittent brain fog, visual problems are much worse and have prevented me from working/being completely functional.  I also appear to have become exercise intolerant where even 1/2 hour of mild exercise can make my symptoms worse for up to 48 hrs.  There are times where my brain fog is severe and I have difficulty walking.  My husband says I "lurch" around.  We live in a small town and our local doctors have no answers as to what could be causing these symptoms. Does this sound like it could be something like MS or Lupus?

[Lulu54]

oops! I thought I was on the MS patient forum and not the Expert forum - I would invite you to come over there and read our health pages and join us for ongoing conversation.

Lulu

[Lulu54]

Hi and welcome to the MS forum - you are a testament to surviving being in limboland.  40 years without a diagnosis is an incredibly long time and a statement about your ability to cope.

All your symptoms appear to point toward a neurological problem.  Have you had a lumbar puncture?  have you had an MRI of your spine?  We have a couple members here who have ms and have clear brain MRI's.  It can happen in somewhere between 5-20% of all MS patients.  

You say your ct of your lungs shows lesions - that is definitely not MS.  MS lesions are confined to the central nervous system.  You need to have the lung problem diagnosed and soon.  We have another member who thought she had MS And it turned out to be lung cancer.  I don't mean to scare you but you have to keep open to all the possibilities.

i hope you will investigate our health pages while you are here and take the time to learn more about MS.

We're here and happy to answer any questions you may have.

my best,
Lulu

[Dr. Daniel Kantor, MD]

Unfortunately, it is difficult to say from an online description alone, but you are describing a lifetime of intermittent symptoms.

It definitely sounds as if you need a work-up and I suspect that some of your complaints are not related to each other.

in amy case you do need to see a neurologist.