rblog

I spoke to the neurologist today with the complete results from the spinal tap. There is protein in the spinal fluid, which indicates that "something is wrong" with the spinal cord function, which confirms that the nerve problem is indeed a central nervous system problem and not a peripheral nervous system problem (there was never any doubt of that). However, the presence of protein is non-specific - that is to say, it does not indicate a particular problem, just that something is wrong.

There was no sign of inflammation which continues to rule out the standard auto-immune diseases like MS.

So, where do we stand? There are basically two candidates for the problem. Our friend the AV Fistula and then the category of "genetic" problem. Let's take a look at both of those....

1) Av Fistula - A fistula or other vascular problem would cause the symptoms I am seeing and we have seen some "prominent" blood vessels on an MRI that could be a fistula, or they could just be how my blood vessels are. On the negative side, fistulas are almost always accompanied by muscle weakness and by a high T2 signal on the MRI - neither of which show up in my case. The good news about a fistula is that they can be repaired. However, a spinal angiogram is necessary to detect them, which is not a risk-free procedure - but the repair is done during the angiogram, a second surgery is not needed.

2) Genetic Problem - This really means unknown and untreatable. We might be able to determine that I have a fairly unusual hereditary disease that impacts the blood vessels/spinal cord region, but even if we gave a name to it, it won't be any more treatable. We just have to monitor how it goes and hope for the best. This diagnosis is obviously an "else" condition - that is to say, we only come to it if we have ruled out everything else.

So the bottom line is whether/when to go for an angiogram. The arguments I see are something like:
* Never - It is risky and there are factors that indicate a fistula won't be found
* Now - If it is a fistula, better to fix it now than later, as the fix will generally arrest further problems. If no fistula is found, then at least we know what it is.
* Sometime between now/never - Go for the angiogram when the symptoms are worse - this way the risk of the angiogram is somewhat offset by the need to fix the symptoms. However, since angiograms usually halt the spread and don't usually (30%) reverse the spread, waiting for severe symptoms may be too late.

All in all, I am thinking "not too distant future". I definitely want to avoid July/August as UCSF is a teaching hospital (and we know that new interns start July 1). I am not sure I want to deal with it by June. So, perhaps sometime in the fall is my best guess. I will do some more research as to the recovery and check Molly's schedule for a time that is better rather than worse.