Friday, May 25, 2007

Mystery Ilness, where's House when you want him?

I have not been on the blogger map for a while.

I have not really been myself for some time as it has not only been the anxiety of University, finances and benefits that have brought me down, but a "mystery" condition,

It manifests itself with twitching and/or cramps in various muscles varying from muscle jerks to barely detectable but constant vibration. Most worrying of all is the way that my tongue has been non stop twitching for over two months (maybe more as I first noticed a couple of months ago when ironically I lost my voice shouting at the phone after making an appointment with the neurologist)

It is difficult for me to know whether what these muscle symptoms are, for instance are they related to the various parasthesias, I have in my hands and sometimes my leg and feet which are supposedly from trapped nerves, or is it something else.

Whatever, if I count in the parasthesias, I find myself looking at the possibility it is not trapped nerves at all but demyelination as per something like MS.

If I look at the tremors, like the desire of my teeth to be chattering all the time, and finger and thumb tremors in my right hand, I start thinking Parkinsons, but worst and most frightening of all is the tongue twitching. Especially when you start thinking what it might be and then find you have difficulty swallowing or pronouncing words.

The good news is that I have had the neurological exam now, and there is no weakness in any of my muscles, or bad reflex signs or anything to indicate a progressive neurological disease of any kind. If the EMG test which I will probably have to wait months for is clear, then I am in the clear completely, however I am still left with the twitching, the cramps and the tremors which is annoying to say the least.

For what it is worth I have had muscular twitches of one sort or another ever since my teens. I first saw a neurologist in the 1980's who did not see them (they mysteriously come and go, sods law they are never there when you see a consultant) he just wrote me off as a clumsy person.

Nothing bad showed up the last time I had an EMG test about two years ago, but the twitches had not migrated to my face then.

If anyone wants to do some useful medical research instead of looking for cures for autism, they can go and find a cure for this condition, trouble is nobody cares about it, because it does not kill you, it is simply an unexplained neurological condition that is left over when you have eliminated all the bad diseases out there. Even House wouldn't have the answers for this one, but it seems there are lots of us out there with the same.

It has been called Benign Fasciculation syndrome a concatenation of words which I find effectively meaningless because benign it is not. Especially when you consider the anxiety it cause people like me who have access to google and a list of the worst possibilities. What scares the living daylights out of most people who have it, is the surface similarity of the symptoms to ALS, in my case with the tongue and face now chiming in, Bulbar onset ALS the worst kind.

Oh well, I am going in hospital for another operation on July 3rd. I will probably die of MRSA or septicaemia knowing the state of hospital hygeine these days. And if I live (which I probably will) there is no guarantee it will be any more successful than the last one, which still leaves me with some problems in my left hand.

The joys of being a pessimist and hypochondriac eh :(

Psst what's that I heard someone say, mercury poisoning ........ :)


Steve D said...

Larry -
I sincerely hope you get to feeling better soon. Hang in there.

kristina said...

Of course it must be mercury poisoning-----not really. Take care and hope it goes well in July----and that you post again before that---

Ms. Clark said...

Physician chelate thyself. :-)

Mike said...

Hi Larry

try to keep going for a bit longer. We still have unfinished business in the NAS.

laurentius rex said...

Plenty of unfinished business, it is just getting interesting :)

However if the surgeon or anesthetist botches it up in July, well you never know do you.