Wednesday, August 25, 2010

Of Syndromes and Spectrums (crossposted to the sister blog, Cramp Fasciculation Syndrome)

I've said it before, but it bears repeating: CFS and neuromyotonia are not BFS. Part of the problem lies in the medical literature; even Adams and Victor's Principles of Neurology describes CFS as both "probably a variant" of BFS and as "a mild form of neuromyotonia."

To understand how these syndromes can be the same and yet so different, it's important to know what a syndrome is. A syndrome is simply a collection of medical commonalities.

As a collection of commonalities, BFS, CFS, and neuromyotonia are essentially the same syndrome with drastically differing levels of severity.

But this does not mean that they have the same cause.

Indeed, a singular cause for all three has not been established. What is known is that both CFS and neuromyotonia can be acquired, hereditary, or paraneoplastic. A few patients with CFS, and more, but not all, with neuromyotonia, demonstrate elevated voltage-gated potassium channel (VGKC) antibody levels through blood serum tests.

Though researchers think there may be many catalysts for the development of these disorders, they are in complete agreement that they symptoms of CFS and neuromyotonia are caused by physical processes.

In contrast, patients with BFS never show elevated VGKC antibody levels. Some researchers theorize that BFS is indeed caused by the same physical processes that occur in those with CFS or neuromyotonia. This is quite possible in many cases, since the sensitivity of the antibodies tests are questioned. Other researchers theorize that the symptoms of BFS are a physical manifestation of stress. It could be that there are several causes for the twitching known as BFS.

My point is not that those with BFS are stressed or unbalanced. Some may be, and some clearly are not. My point is that there is unanimous agreement among researchers that CFS and neuromyotonia are not caused by stress; they are physical disorders with physical causes.

Monday, August 9, 2010

Medication Setback (crossposted to the sister blog, Cramp Fasciculation Syndrome)

I was prescribed carbamazepine, sometimes marketed as Tegretol. The neurologist who prescribed it had me start with less than a half dose and build up slowly to a full dose.

I didn't think too much of the wooziness; after all, one of the reasons for starting small was that the medicine can give users a drunken feeling and it's best to adjust to its effects gradually.

I also wasn't too concerned about the flu-like symptoms; I just thought they were part of the drunken feeling I was supposed to be experiencing. About the time I started taking the full dose, I noticed swollen lymph nodes. That was a little more concerning, but I hoped they'd go away.

Last night I noticed a rash, first on my legs and arms, and then on my back. By today, it was all over my body, including my face.

The itch from it is agonizing.

The neurologist who prescribed the medicine said to stop taking it immediately and to see my general practitioner. I'm still waiting for my general practitioner's office to get back to me. I've already explained my symptoms to the receptionist; now I'm just waiting to see if the doctor wants to see me, or if he's just going to call in a prescription for steroids.

I have no idea what I'll need to try next for the muscle tightness and pain; the neurologist won't prescribe anything until this reaction clears up.

I'm posting a couple of photos of my legs/feet. They don't really do this rash justice, though, because the flash largely washed out the redness: