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Almost pure blood and blood clots in urine
Kidney & Bladder | Last Active: May 15 9:54am | Replies (61)Comment receiving replies
Old Karl, where and how can I get the $70 dollar test? This might be worth getting, although I have submitted a
"spit" sample to a group that is studying genetics in relation to autism, which I have; officially diagnosed Asperger's. Submission was 2 years ago, and have not heard anything back yet; they did say if they found a "life-threatening" gene they would inform but have yet to hear anything back. I am going to ask my NP Wednesday for a referral (hopefully "urgent") to a nephrologist/internal medicine doctor a little closer to home then the urologist, so will be getting both input. The urologist is so bent on trying to find cancer (which is not a bad thing), but afraid he might be missing other possibly crucial things. Do you have any doctor working with you, and are they able to help you? Thank you for following this and giving me some input .... IF you don't mind me asking, how old are you and when did all this start happening to you?
Replies to "Old Karl, where and how can I get the $70 dollar test? This might be worth..."
Hi,@so1frustrated... You can get a $70 or $80 dollar test many places. The best I know of are Sequencing.com, Nebula Genetics, or even AncestryDNA. I would go with Sequencing.com or their partner, livingDNA.com, or with Nebulagen.com. They will send you a spit test, then do the sequencing of about a 1% of your total genome. If you want to do the whole genome, it is around $500. for my $70, I got a list of gene and variant and Chromosome numbers totaling about 1200 pages, with about 40 on each page. Sequencing.com will send you a list of your genes and your variants, and give you a number of reports, as well as a membership to read your gene list on Genome Explorer. You can take your pick of their reports and a full list of your genes. Best to sort out with them or Nebula, because that industry is changing so rapidly I cannot keep up with their offers. The second thing to do is get familiar with http://www.omim.org/browse/gene/2934. That is the Gelsolin Gene number. That will give you more info. Then check our http://www.hpo.jax./Gelsolin (or whatever gene or syndrome you are looking at). Be sure , If you talk to Sequencing or Nebula or Living DNA.com, to tell them I sent you. Now, all this started with me at conception. The doc gave me a good slap on the butt, and told my parents not to expect me to live to see my third birthday. I am 81 now. I work hard, physically all my life until about age 40, when my whole body started dumping on me. And here is a shot of my ECG, top left corner showing proof of Gelsolin as the two lines are not identical when magnified.. So Good luck.
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Hi sofrustrated,
There are a number of genetic testing companies out there. Do your homework to know what you are paying for. @johnbishop and @wsh66 provide some cost and companies in this discussion starting here: https://connect.mayoclinic.org/comment/246621/
You can also call Mayo Clinic's pharmacogenetics team to learn more and ask questions about different tests, their validity and associated costs. See more info here: https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics
It's free to ask questions. 🙂
As an aside, I also want to invite you to the adult Autism support group here on Connect:
- Autism (ASD) https://connect.mayoclinic.org/group/autism/