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azmusiclover

Newbie To The Forum, From Arizona

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Hi Dani, was wondering where you were. You still in chandler after the move? Sounds like you an angela are young moms, which is nice to share notes with. Saw you other post, I get a positive ana too, hope they can figure it out. My ana is either from hashimoto thyroiditis per endo or Undefined connective tissue per my rheumy. Who's doing your testing.

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hey yeah, i see dr. saperstein who ALWAYS RETURNS PHONE CALLS and said has a friend with wife with eds pots. i have been tested for catecholamines, (24hr tests) but all my tests including the sweat test and you have to blow into that stupid tube were "unremarkable". but i was not symptomatic those days my eeg came back off and my first neuro told me there was no relation with my unexplained hr bp rainsing eupon standomg which i dont believe. whatever...i am going to start doing yoga again before i have to get on all these other drugs...at least my neuro is actually cool enough to order a dvd that teaches how to breath right. it i called COHERENENCE... i find it works but impossible to do all day with work ande such. but i fn hate the thought of taking pills..................!

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and yes. i have been tested for ms several times, my big sis has it so that seems to be everyones first conclusion, sis is doing better than me right now!

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Hi Azmusiclover,

As you can tell, there are several of us in the Phoenix area. We really should set up a meeting sometime so we can all get together and meet. I've met Issie (wonderful woman) so far, and would love to meet more of you. I'm in Tucson, and my next appointment with Dr. Goodman (great doc!) is on Tuesday, October 9th. I'm sure we'll spend a night or two in a hotel up there, so if anyone's available...let's plan something!

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I was just thinking the same thing Jana. Hey, I'm going to be down in tucson to see a genetist at uofa, two times actually. My husband is going with me at least to the consult with genetic counselor and then a few weeks later meet with the doctor. She specializes in the mthfr gene which I just found out I am homozygous for, the worst form of it. It explains a lot about my and my families medical history, including miscarriage, strokes and bipolar disease. It doesn't explain though the immune defects and autoimmunity, so I'm guessing another one of my genes is defective as well.

The thing about mthfr is the treatment is bypassing the defect by giving the active form of folate and b vitamins, which seems so much easier and better then treating with a bunch of man made drugs with all kinds of side effects. Looking forward to seeing what insight this new doc has.

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I am interested:) keep me posted on when and where. I know of another person from central phoenix who has been going through hyperpots for years but doesn't really post on forums here but she see's Dr. G as well, I'll let her know as well.

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Oh Jana, we keep missing each other. I won't be around then either. You guys will have to let me know when you want to plan another meet. I will try my best to make it.

AZgirl, I'm anxious to find out what you learn about MTHFR - since that is one of my issues too. I've been trying to use the methyl form of folic acid and B12 ----ugh ----it makes you really sick. I have read there is a detox that you have to go through - but, so far - I'm not being able to tolerate them. Any info will be appreciated.

Issie

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Hey, issie, yes there is suppose to be something called mthyle trapping. I didn't feel good when I started the metanx, so I stopped and just did sublingual b12, jarrowdoph and added in flax oil pills for a week or so. I just started the mantex again and I don't notice anything yet. My symptoms might have been because of 44 day menstrual cycle. Who knows these things are so hard to figure out.

However my b-12 and d are up finally. Those labs that my cardio did for mthfr showed really high inflammatory markers. She said that those alone would explain the achy fatiguey not well feelings. The other labs while still abnormal have shown improvement since starting synthroid. She didn't think that I was at risk for a heart attack even though that is what health diagnostics labs concluded from their tests. So it is probably the autoimmunity causing the inflammation, she also didn't think ivig was a factor saying it would probably help not make it worse. My neuro though has me down to half of what I was on and some of the feet and hand neuropathy issues are back, though my bp/hr are really good compared to what they were. So it's still a mixed bag for me. Maybe upping the synthroid will help calm the inflammation down, I started that and the plaquinel in the spring, so maybe not enough time yet to turn it around.

Yes, I'm excited too. It looks like they may be considering me a research patient and consult with the genetic counselor, before seeing the doctor may not even cost anything. Her name is Dr. laukatis at uofa medical center north campus, it you want to look into her. Might not hurt considering you have eds too.

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I just had someone send me a link in regard to other enzyme issues connected to or in addition to MTHFR. It has to do with problems with sulfur/sulfites which I know is an issue with me. It says you have to go on a low diet of sulfur foods and also do some other support things before you do the MTHFR protocol or it will make you sick. NO KIDDING!!! So, I have more research I have to do to figure out how to work on these other things first and then do the MTHFR protocol. Learning - just takes time. Can you PM me with her phone number - I'll for sure give her a call. Yeah with EDS and other genetic issues - would be great to be in a study. I'm game - if it will help.

Issie

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Issie, don't know for sure yet if she deals with all genetic issues just know mthfr for sure. I just googled her last name and uofa and her uofa page popped up. The number is a master number for uofamedical. She doesn't have an individual one. I guess it's their scheduling number. If you do that you will get her bio and everthing, better then a phone number which I actually don't have. They've called me or emailed me.

Yea, I'm hoping she looks into to those other defects, my cousin has the gluathione one.

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Hey AZ girls. I know this is an old thread, but I'd like to connect with you all. I am in Gilbert, building out in Mesa right now. Work in Mesa. I found Dr. Kreutz at AZ Arthritis and really like his bedside manner and approach. I have EDS and am narrowing in on Periodontal EDS, one of the rarer forms, EDS8, EDS Type 8. I also have symptoms of MCAS and RA and am just pending bloodwork and X-rays to confirm this all. In the meantime, I looked at my collagen genes in 23andMe data, and I see a lot of "missense" and "undetermined" on CR1 in particular. Anyhow, I'd love to connect with you all.  :) Sharky_Jeana Insta 

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I'm in AZ too, north of you. I am new to this and finding anyone that takes it seriously is a problem. 

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