Another Newbie

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Another Newbie

Postby DOT » Thu Nov 19, 2015 1:01 am

Hi, My son sees a Genetics Specialist & when I took him recently I mentioned that I think I have Fish Odour Syndrome. I explained my symptoms & mentioned that my daughter has some of them too. The Genetist said that going by the symptoms she would agree that we both have it. She said to go to the doctor & ask for a blood test, which I did. The doctor decided to refer me to an allergist at the local hospital instead & said that they were the best people to see & that they would do the blood test too. Have been & saw them but they won't do a blood test, instead just advised to not eat any foods which make it worse. I would prefer a clinical diagnosis done from a blood test, which is what the Genetist said I should have. Going back to my doctor tomorrow to insist on it but what should the doctor put on the blood test form, does anyone know? Thanks
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Re: Another Newbie

Postby bigvern » Thu Nov 19, 2015 9:38 am

take that to your gp
Nigel Manning is happy to talk to GPs about testing if they need clairifcation.

If I was you I would also ask to be refered to one of the specialists - Dr Lachmann in London is an expert in TMAU. - you then have all the confidence in any test results and their interpiration and his advice on management etc.

the blood test you mentioned sounds like gentic sequencing which I had done much later after I was diagnosed to establish if my daughter has it (she has it as well) - I have never heard of it being mentioned as a primary test for TMAU.
I got the test done by being refered to the northern genetic counselling service, who had to interview me etc before pleading my case to get the sequencing done. There may well be another simple blood test that I am not aware of.

be assertive with your gp, also take the FAQs from Dr LAchmann
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