CSF Testing delays

[Jugglah]

My wife had a lumbar tap over 4 weeks ago and we still have not received results of the MS portion of the testing.

After the first week the lab told us that there was a nationwide shortage of the necessary reagent and it would take an extra week for results. After two weeks they told us that they had the reagent and the sample, and we would have results in a week. After the third week they told us we didn't make it into the previous batch and it would take a further week.

Now, after four weeks, they tell us that they are expecting to recieve the reagent soon and hopefully we will have results next week. We seem to have gone backwards in the last two weeks.

Obviously, someone is not telling us the truth. I haven't found any information on the Internet regarding shortage of reagent or delays for results, nor any patients complaining about delays. The story from the hospital lab keeps changing but they say they can't tell me where the sample is, what lab has it or any other information. They can't even tell me how long the sample might be viable, or if we can still have confidence in the result.

The process is incredibly cruel and quite indifferent.

Can anyone confirm or refute this story about the reagent shortage? Is anyone else experiencing delays or aware of anyone who has? Supossedly thousands of samples have been caught up yet there is no word on the Internet.

Do I have any options at all? Would contacting my attorney help, or just cost me more?

How long are CSF samples viable? And for how much of that time are the results entirely valid?

Thank you
John the Jugglah

[HVAC]

I know it is frustrating I waited six weeks in 2009. At least I was told up front it would take that long.

Alex

[Sparkysarah]

Hi John

Just to say that I am so sorry that you are having such a frustrating time waiting for your wife's results. I can imagine that as each week goes by it gets worse and worse as you psyche yourself up for the result and then it has been put back again and again.

I really hope that you get some answers soon and please pass on our sympathy to your wife and say that she would be very welcome to post of the forum if she needs to have a vent also!

Best wishes

Sarah

[COBOB]

The antibodies they are testing for should remain viable when the CSF and blood are stored correctly.  Contacting an attorney probably will not help and just cost you money.  There has been an issue with the supply of various lab and medial supplies recently.  

I suspect that while they said  "reagent" they may be referring to a  shortage of the gel electrophoresis media used in the isoelectric focusing technique.  I heard about the shortage of gel electrophoresis media from a fried at a state forensics lab where they use the media for DNA testing.  

Now, along with the medical and research consumers of this product, there are now commercial and crime lab consumers competing for the same limited supply..

Bob