SLE OR MS? nobody seems to know

[ctcollins]

Hello,
         I am an 38 old male and for the past 18 months i have been out of work due to constant head aches and migraines,fatigue, dizzy,constant pain, ringing ears ( very loud ), sensative to sound causes myoclonic episodes, eye pain, blured and double vision, flashing lights and floaters. Lower legs, forearms, hands and face swell then go numb, all my fingertips are almost completely without sensation causing it hard to hold objects. I always wear sunglasses inside or out due to light makes my eyes and head hurt 4x worse, I also have a severe gait problem i drag both my feet and right foot is twitsted out to the right at about a 45 degree angle. I have to use a cain and still have problems with balance and falling, If i get in any moving object ( car, plane, train, etc. ) i get instant motion sickness and severe head and eye pain. I have myoclonic seizures and my right arm tremmors, i also have muscle pain and stiff muscles and joints and one day my right arm and shoulder locked into a certain position for about ten minutes and could not move it at all, same has happened to two of my fingers also. I have buring, itching extremely sensitive skin. I have had every test done at two different hospitols refered by my neurologist and have do definate answers to what is the cause, I've had 4 lumbar test that show my protein is at 114, 6 MRI's and the last one they thought i might of had a stroke, the MRI's on my spine show most of my dics to be degenerative and signs of mild to moderate spinal canal stenosis and mild to moderate bilateral neural foraminal stenosis, and i also came back possitive for autoimmune and ANA at 1:320 in nucleolar pattern, Creatinine 1.4 and high macrophage.I have had multiple eeg, emg, ct, blood, urine and all the eye test you could immagine but these are the only definate findings from all my test. If you have any thoughts i would be very happy to hear them.

Also, shoud i be concern that my protein level in my CSF has been around 115mg and my creatinine in my serum at 1.4 for over 18 months

Thank you for your time, CTCollins

[LifesAHeadache]

You poor guy - this is really severe and I'm sorry I am not a doctor.  I can tell you I have Lupus, RA and these bazaar headaches that no one knows what they are yet.  People with Lupus do have more migraine type headache but not all this stuff.  You need to get to a solid teaching hospital and tell them you are not leaving without answers.  Last time I was in the hospital I told them I wanted to talk to Dr House and his full team.  Didn't get it but did get a good referral to Washington University doc in St. Louis.
Do your fingers ever go white like the blood is gone and then when you get them warm they turn blue.  This will numb your fingers and toes and is controllable with medicine.  It is called Reynauds Syndrome.
Have you gone to a board certifed Rhumetologist (sp), they will give you a definitive diagnoses of SLE, RA etc...The blood panels will show.  With all of this it looks like something turned on your sympathetic nervous system and it won't shut down for rest.    The disc issues can be fixed but I would wait until definite diagnosis on some of this.  Take care.

[LifesAHeadache]

You poor guy - this is really severe and I'm sorry I am not a doctor.  I can tell you I have Lupus, RA and these bazaar headaches that no one knows what they are yet.  People with Lupus do have more migraine type headache but not all this stuff.  You need to get to a solid teaching hospital and tell them you are not leaving without answers.  Last time I was in the hospital I told them I wanted to talk to Dr House and his full team.  Didn't get it but did get a good referral to Washington University doc in St. Louis.
Do your fingers ever go white like the blood is gone and then when you get them warm they turn blue.  This will numb your fingers and toes and is controllable with medicine.  It is called Reynauds Syndrome.
Have you gone to a board certifed Rhumetologist (sp), they will give you a definitive diagnoses of SLE, RA etc...The blood panels will show.  With all of this it looks like something turned on your sympathetic nervous system and it won't shut down for rest.    The disc issues can be fixed but I would wait until definite diagnosis on some of this.  Take care.