CSF

[teenyturner]

I read on other posts that other people have O bands in their CSF.    My CSF showed increased protein and tested positive for 14-3-3 ? Protein or was 13-4-4? Anyway, I was told this is the same as CJD and as there is no CJD in Australia it caused some excitement at the university where it was tested.  

The neurologist made the assumption that I DON'T in fact have CJD and the protein was from a degenerative process.

Has anyone else tested positive for CJD in their CSF?

Do you have an opinion on whether he was correct in dismissing CJD as a possibility?

Regards

[teenyturner]

Hi, I don't have MS.  I have been diagnosed with a genetic metabolic syndrome that's so rare it doesn't have a name.

It's similar to Menkes disease in children but I didn't get any symptoms until I was 47.

At first I tested positive for bone marrow cancer and had 5 cycles of chemo but then I got my neuro symptoms and further testing revealed an inability of my body to absorb or retain copper ( I just pee it out when your not supposed to) .  The copper deficiency has been blamed for the bone marrow failure and the neuro problems.

When I was first being tested for the neuro problems they thought it was either auto immune or infective and they were going to give me IVIG and see what happened. I was already receiving steroids for the bone marrow failure.

I joined this community because my condition is extremely rare and I feel very alone.  If I ask my doctors a question, they can't answer me because they don't know the answer themselves.  They don't know if IV copper replacement is going to help, whether my condition will stabilize or even if I'm dying from this or what my  expectancy is.  Every time I get a new buzzing or weakness etc, I wonder if it's the beginning of the end.  All my doctors told me that without any treatment my death is going to be pretty gruesome but then they don't know if the treatment is going to work so I have that gruesome death comment in the back of my mind all the time. I'm not worried about the death bit just the gruesome bit.

If this disease isn't bad enough the unknown and loneliness just adds to the
misery.

Regards

[doublevision1]

sorry I don't know much about CJD, but re: O bands, I had none though also had elevated proteins which is considered abnormal and could mean any number of things, including MS.  My MS dx was based on those results, plus abnormal brain and cervical spine MRI, and two distinct clinical neurological attacks.

Do you have symptoms of MS?