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CSF Testing delays
Also posted in member support forum:
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
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
Thank you for the info and encouragement, everyone. It's very difficult to have confidence when the lab keeps changing their story. If they'd told us 6 weeks in the first place it would have been a completely different experience.
John the Jugglah
John the Jugglah
Welcome John,
Keep in mind that most things in this disease process move at a snail's pace - neurologic time is a different schedule.
While you are waiting for your results you might take some time and check out our health pages - yellow icon upper right side of this page - they contain a wealth of information about MS and the diagnostic process.
You can also ask about the LP delay to the experts at labtests online. These are real techs who can give you the straight scoop. There is a place you can send them questions and they really do answer.
http://labtestsonline.org
I hope this helps during your wait and that you and your wife come through and spend some time with us.
be well, Lulu
Even under ideal condidtions it usually takes 2-3 weeks to get the results from this part of the LP study. I hope it is conclusive for whatever results your wife is hoping for when the results finally come. Is treatment being delayed during her wait?
Mary
Mary
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
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
Yes I was told the same thing about the shortage as well I had LP done on 12/30/10 and I just got the result back this week..Hang in there I hope you will get answers soon.
How horrible!
I waited about 4 weeks for my results though I think my doctor may have had them. I do know there are only a couple places that do this part of the test so if there is a shortage it would impact thousands.
Have you talked to your doctor since the test was done? May he/she can find more info.
I haven't heard about a shortage but I don't know what the reagent is.
We have people here in the scientific arena that may know.
In any case, welcome to our support forum
Red
I waited about 4 weeks for my results though I think my doctor may have had them. I do know there are only a couple places that do this part of the test so if there is a shortage it would impact thousands.
Have you talked to your doctor since the test was done? May he/she can find more info.
I haven't heard about a shortage but I don't know what the reagent is.
We have people here in the scientific arena that may know.
In any case, welcome to our support forum
Red
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