Hi all, I have been on here a few times while I was trying to be diagnosed. Quick history:
When I was born I could not bend my left toes.
13 months old Bacterial H Flue Meningitis and coma
Childhood I had a lot of UTI and Major kidney infections
For the past 4 years new symptoms include:
Left foot and leg are paralyzed at times. Always numb. Left should and neck hurts bad, both hands go numb with pins and needle, chest pains, bad tremors and twitches all over my body, loss of balance at times, my eye ball move back and forth really fast, dizziness where I get a upset stomach, extreme fatigue, bladder problems, forgetfulness and 11 lesions on my brain MRI
I have had every test done. I am very low in my Vit D and I was also DX with Fibromyalgia. The first Nero I went to he DX me with Static Encephalopathy. This does not make any since I am obviously getting worse. The symptoms I described above are so bad some months that some times I do not even want to get out of bed. I asked the doctor why am I getting worse? He told me that I couldnít be getting worse because itís STATIC! He told me that he DX me with Static Encephalopathy because of my meningitis. I had to be seen by the Rheumatologist since my SED rate was high. She told me that my problems were defiantly for a Neurologist and that she suggests that I get a second opinion because my symptoms are getting worse.
Does this sound like MS still? Could my brain lesions actually be misdiagnosed and they are really from MS and not static Encephalopathy?
Dear Madymaters, thats an interesting question. Since Static Encephalopathy is a clinical diagnosis, and there is no tests for it, its very possible that it was a misdiagnosis. Not being doctors here, we couldnt tell you for sure. However, your symtoms are definately neurological in nature and you should definately be going to see a Neuro for another opinion. Do they sound like MS? maybe....but MS presents like so many OTHER diseases that its hard to tell . Have you every had a lumbar puncture (spinal tap)? have you ever had a MRI of the brain? Was anything seen?
Id be requesting a appt with a MS specialist....only because even if it ISNT MS, they can still rule it out and direct you to the type of specialist you need.
I wish you well....and will be curious to hear what comes from seeing anothr doctor. Keep us posted??
Thanks for your response. I have had a LP. It came out negative but my brain MRI showed 11 lesions. The doctor Told me that the lesions are scares from my encephalopathy. Im only concerned because with static Encephalopathy I am not suppose to get worse and clearly I am.
Thank you again
Mady, LP was positive for what?? The LP is used to rule out certain things. With meningitis, it would have been positive for that...but unless they were checking for OBands, which are indicators for autoimmune diseases, it wouldnt have shown them....Im not surprised that Meningitis could leave scars...but this is where you need that second opinion.
Not all scars are MS related. Depending on the size, placement or location, they can be from Encephalopathy or even a migrane( not to mention prior head trauma from a accident) ...also, there are over twenty documented types of Encephalopathy . Its possible yours isnt static but something else.
Definately go see a neuro and talk to him/ her about the chances of this being misdiagnosed...and let us know?
Update: I had my second opinion on the 1st with another Neuro. After doing all the typical neuro tests and looking into the back of my eyes, he wanted to hear about my past history and my past year. I went on and on. I pretty much failed every neuro test (shaking hands,legs,feet,balance ect....) He looked at my brain MRI a little over a year ago and told me that indeed a have plenty of lesions. He feels as if my symptoms all sound like MS but the lesions on the brain are not where he usually sees them on MS patients. He then proceeds to state "MS lesions are never exact- MS is a mysterious disease". I am now scheduled yet for another Spinal Tab and Brian MRI with dye. He told me that if he finds one more new lesion I will be diagnosed with MS. So now I wait again......