New Poll - What's your TAM mutation?

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kilerb
Full Member

Posts: 37

New Poll - What's your TAM mutation? Jan 3, 2020 2:10:33 GMT

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Post by kilerb on Jan 3, 2020 2:10:33 GMT

Jan 3, 2020 0:44:04 GMT georger said:

I've now learnt that I don't have a mutation of any of the 4 TAM related genes STIM1, ORAI1, CASQ1 or EBF3. Even more surprising, nor do I have any obvious mutations of other muscle related genes. What a mystery. I will have to give my muscles a good talking to, as to naughty children, "Stop misbehaving, there's nothing wrong with you." Will I be expelled from the forum as an interloper?

But you've had a muscle biopsy that says you've definitely got TAM? So weird!

georger
Senior Member

Posts: 178

New Poll - What's your TAM mutation? Jan 3, 2020 4:58:33 GMT

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Post by georger on Jan 3, 2020 4:58:33 GMT

Well, I've got a myopathy and TAs. TAs do feature in a lot of other disorders other than TAM. Could be an as yet undiscovered TAM gene or an undiscovered myopathy. Anyway interesting stuff, but I'm going to get on with the important things such as experiments to find the perfect cider recipe.

Craig Lane
Administrator

Posts: 133

New Poll - What's your TAM mutation? Jan 28, 2020 19:20:48 GMT

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Post by Craig Lane on Jan 28, 2020 19:20:48 GMT

Then there were four.
Come on folk we're not asking for your bank account pin number This is the forum that the Doctors are getting their information to help you Fill in what you know or don't know We are the only people who actually care about our care.

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martyjo74: Hi , I am a new member to this site and I want to say thank you to Craig Lane. I am a TAM sufferer since 2003. Finally diagnosed in August of 2004 by muscle biopsy at the University of Iowa Hospital in Iowa city, Ia. I was told back then to find a local Pr May 9, 2015 1:45:33 GMT

martyjo74: Oops, sorry sometimes my fingers don't work so well and push the wrong keys. I ended at trying to say Primary care physician. I located a pcp and he prescribed Soma,a muscle relaxer and Norco for pain. Sorry can't complete my comment right now, back later. May 9, 2015 2:18:22 GMT

srini: Hi I am a new member and I was diagnosed with TAM in 2011, I have muscle pain and I am loosing my vision. I was absolutely fine before I was put on Lipitor for Cholesterol and in 3 years time all these issues precipitated. Nov 3, 2015 1:38:47 GMT

Craig Lane: Welcome to our forum Srini. Please feel free to join in any of the posts. If you haven't already, there is a brilliant paper with a summery of TAM written by Nuttysmallholder. Any questions or answers we are all keen to read. Nov 3, 2015 13:01:03 GMT

tam2011: As srini, also diagnosed in 2011 after deep muscle biopsy. Pathological finding of tubular aggregates; fatigue and weakness (muscle and general), exercised induced fatigue, lots of pain after overdoing exercise , raised CPK level when I exercise too much. Nov 25, 2016 5:39:02 GMT

Craig Lane: Hi tam2011, Thanks for joining our forum. We hope there is some information here that can help. Contact with like sufferers can maybe help. You are not alone with this. Feel free to post on the forum . Join in with previous posts or start your own. Nov 25, 2016 20:56:00 GMT

tam2011: Thank you!! Dec 6, 2016 5:44:46 GMT

leteeters: leteeters I'm still kickin glad to see the board hasn't left me. Feb 22, 2017 19:44:55 GMT

leteeters: Hello to all new folks, hello to the old ones too. Feb 22, 2017 19:49:31 GMT

tph: Hello everyone. I was so relieved to find this forum on TAM. I have a 20 year old son who was diagnosed with TAM in February of 2015. This diagnosis is so rare that he often feels alone and like no one understands. Apr 13, 2017 1:23:09 GMT

wanbaize: Hello everyone!! My name is Nora and I just wanted to say that I am so happy to see that this forum is still alive!! My husband was diagnosed with TAM in 2014, we have been looking to meet and talk to people who unfortunately have been too!! Apr 26, 2017 16:52:35 GMT

Craig Lane: Welcome to the madhouse! Join in a thread or start your own. As there has been an increase in female members who are supporting Tamites maybe they would like to start a thread and compare notes. Share support grumbles and recipes. The Forum is here for you Apr 27, 2017 19:55:18 GMT

leteeters: Just checking in. Healthcare in the US right now is absolutely insane. I don't know what else to say at the moment. Sept 6, 2017 10:24:30 GMT

Craig Lane: Maybe I could get a job then I'd fit right in Jan 8, 2018 19:37:56 GMT

alcwert: Just checking in to let you know that I have devoted a significant portion of my Facebook pages to the exchange of information between TAM sufferers and their families. Anyone is welcome to access my Facebook page using my name (Alan Siewert) or "Tubular.. Jan 30, 2018 0:45:39 GMT

alcwert: Nice to re-connect with you, Craig. Don't know if you remember me? Jan 30, 2018 0:46:47 GMT

Craig Lane: Hi Alan, Of course I remember you, and I follow your facebook page. Jan 31, 2018 21:56:25 GMT

alcwert: Craig ... Did you read my post about the changes I have experienced? Feb 13, 2018 0:56:44 GMT

wan: Hi Guys! Just wondering if you can post alcwert Face Book post about the vitamins he has been using? I had most of the vitamins from a prescribed Mitochondrial cocktail, but ordered the rest today. Should have everything on Wednesday to get started. Feb 19, 2018 22:54:30 GMT

Craig Lane: Seems I'm not the only one to see the results of your new regime and the help it has given you. Wan is on his way to see if he has the same success. I' on a controlled diet at the moment monitoring vitamins and calories etc. Once free I'll be trying it. Jul 11, 2018 22:40:35 GMT