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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Jrl_3327

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Viewing 15 posts - 1 through 15 (of 27 total)
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  • September 8, 2013 at 7:14 am in reply to: what does it mean if my mra shows my left carotid artery in my neck is becoming way smaller than the right side? #4309
    Jrl_3327
    Participant

    Hi shonda, yes I do have all my disk from all my scans I have a ton of them it seems like:)

    August 25, 2013 at 7:08 pm in reply to: Geographic tongue and EDS #4215
    Jrl_3327
    Participant

    I will definitely have my doc. Do a culture. I didn’t realize how thick the white coating really was before when I sraped it I would notice it coming off so I would just brush to remove it for a few hours. When I scraped it today I continued until I got to the bottom and that’s when I seen the blood and underneath there is small bumbs all over and my tongue looked choppy like as if it has cuts on it especially on the side’s. So I looked up some photos and I did see a lot of tongues that looked like mine so I will definitely follow up with my Doc. Along with my poor digestive system that’s is another one they can’t fig. out I think that’s another place Candida likes to hide if I’m not mistaken. Well thank u for your info if its not candida then at least I know. :)!!!!!

    August 25, 2013 at 5:57 pm in reply to: Geographic tongue and EDS #4207
    Jrl_3327
    Participant

    Shonda I just scaped my tongue and yes it started to bleed in spots what does this mean? I never scraped til I got to the bottom every morning afternoon & night when I’m brushing my teeth I of course brush my tongue and a lot goes away sometimes all of it looks like its gone but it always returns. I have a powertooth brush I change the brush every other week at this time and I boil the brush before every use just bc I tthink it is some type of fungus or yeast infection. Once Dr Dianna mentioned Candida the first thing I thought is, is it living on my tooth brush also..

    August 25, 2013 at 5:11 pm in reply to: Geographic tongue and EDS #4206
    Jrl_3327
    Participant

    Hi, we are on oral steriods cortef and fluordicort. When I spit in the cup it is worse than the photos on Dr. Dianna’s video very thick and strings to the bottom my son it only shows the stringy stuff at certain times of the day mine is at any time and the white is only on my tongue no where else in my mouth and my mouth isn’t painful at all like my son’s. The white stuff almost looks like a fur over my tongue I don’t know how to explain it when I scrape it off it is just leaves pink lines where I scrape it. I have big red bumbs on the back of my tongue that are some days bigger than other days but no open sores also under my tongue I get the same big red bumps that come and go. My Dr says its nothing but I know it is something. Also my husband spit in the cup it doesn’t do anything. I did just have a endoscopy about a month ago would they have seen it if it was in my throat or esophagus? Or can it be missed? They said all my biopsies were normal.. thanks again, greatly appreciated:)

    August 25, 2013 at 8:18 am in reply to: Geographic tongue and EDS #4202
    Jrl_3327
    Participant

    Hi, I do have the white tongue & my son & daughter at times their tongue has the white coating I have showed their doc & ent & they both say its not candia but never tested it. I was on antibiotics for 6mo before my surgery and me and my son ade both on a daily steriod my son has been on his for close to a year now. So I will ask our doc’s to actually do a fungal culture.. Do you know how they usually treat it? & is it common for it to return? Thanks so much for the info.;)

    August 22, 2013 at 10:08 am in reply to: Geographic tongue and EDS #4170
    Jrl_3327
    Participant

    Besides a scope how else can you test for candida? My sons doc doesn’t see any connection. But I know you know your stuff Dr Dianna it only makes since to at least check for it. Thats my opinion anyway! 🙂

    August 20, 2013 at 8:23 am in reply to: Geographic tongue and EDS #4147
    Jrl_3327
    Participant

    The geographical tongue so far we are stuck on that one. Just last night my son developed a blister on the inside of his bottom lip after eating some skittles. He’s gotton sores on his tongue and the sides of his tongue but never blisters on the inside of his lip. I don’t know who to go to for this, ENT no help..

    August 20, 2013 at 8:17 am in reply to: Geographic tongue and EDS #4146
    Jrl_3327
    Participant

    Yes I agree I have been told I have stumped them or I’m too complicated of a case basically they don’t want to be bothered. My pcp is very educated but was way to busy to see the signs. Ive been left to do all the research myself but at least now he listens and the sad thing is he does know all this medical stuff he just doesn’t put it together until I give him a diagnosis to at least rule out then he’s like your right that makes since and he will then test me for what it might or might not be. My kids doc I now have on bored but it all took a few years to get them to listen. The specialist really get to me when they don’t want to be bothered, its like why did you become a specialist if your not determind to help “complicated” patients. My doc now wants to right a med book on me because I such an “odd case”. I told him I’m not done yet when I have a few more answers then we can talk. I’ve just learned if the dr isn’t open minded its not the dr/specialist for me. I am pretty much stable at the moment but it all starts back over with my 3 children. A very long journey a stressful one that is! Thanks to Dr Dianna and all her information if it wasn’t for that idk if I would have all the answers I have!!:)

    August 19, 2013 at 7:17 pm in reply to: Geographic tongue and EDS #4144
    Jrl_3327
    Participant

    Yes my my sons has always changed shapes and patterns. But it never caused any problems until recently that’s what I don’t understand. And so far all the doc’s he has seen have never seen anything like it!!!

    August 19, 2013 at 4:15 pm in reply to: Geographic tongue and EDS #4140
    Jrl_3327
    Participant

    Sorry I see that u said you do get the sores that come and go..:)

    August 19, 2013 at 4:14 pm in reply to: Geographic tongue and EDS #4139
    Jrl_3327
    Participant

    Hi I have had life long symptoms that were all over looked until 2011. I myself don’t have a geographical tongue but my 11&1/2yr old son has it and I noticed it before age 2. Well my sister whose a dental hygentist told me what it was when I showed her the weird design on his tongue. All 3 of my children have really bad allergy problems. I have some but not as bad as my kids. My oldest daughter now 17 says nothing helps her all she uses is eye drops also Me and my other 2 take zyrtec which seems to help well for me more so. My son’s tongue now gets sores that are painful we have fig out surgar is one thing that triggers the sores. Does your tongue hurt by chance bc my son’s just started in the last 3 months or so?

    August 15, 2013 at 4:12 pm in reply to: Does Addison disease have any connection with EDS #4110
    Jrl_3327
    Participant

    Hi Dr Diana, I have dark spots on my gums that are turning darker brown and spreading. Yes on the sides of my elbows are darkend there’s a patch on the front of my lower leg/top ankle spreading down to the top of my right foot. The lines in the palms of my hands are dark brown and my knees. I noticed the spots on my gums over 8yrs ago but didn’t think anything about it now its almost all of my gums. I was started on cortef 10mg 2 wks ago. My energy has improved but my appetite is still in the dumps along with every muscle spasming in spots I never imagined could spasm. Also still feezing all the time… But I’m on my way to finally getting some answers along with the correct meds! 🙂 I know I have adrenal insufficincy I will find out in 2wks if its true Addison’s or not.. I will keep ya posted!! Thanks for your educational input I wouldn’t of got this far with out it;)

    July 26, 2013 at 5:16 pm in reply to: Interstitial cystitis, anyone? #3949
    Jrl_3327
    Participant

    So my son told me his stomach just recently started bothering him every morning and he doesn’t know why. So I got tge glass of water out and had him spit in it and this time he had the stringy thing similar to the phots on the video. So what should I ask his Dr to do? Run any specific blood test or ask him to test him for anything in particular? How do they test for candida? He also noticed any sugar products weather its a juice box kool aid, sweets that’s when his tongue get painful and sores develope. Which he does not have these surgar products that often well he used to take a juice box to school with him every day and it never caused any issues until recently.. so far no luck with any Doc’s they all say never seen anything like it..
    Jamie;)

    July 22, 2013 at 9:02 pm in reply to: Geographic tongue and EDS #3936
    Jrl_3327
    Participant

    Sorry one more thing Dr.Diana my son went to the ENT and was really no help at all for my son’s geographical tongue. He refered us to an allergist. Do u know which kind of Dr would be the one to figure out if it is a histamine issue? Or is this just another one I have to fig out on my own… Do you know besides the zyrtec is there more to treating a histamine problem or is it as simple as the zyrtec?
    Thanks!
    Jamie

    July 22, 2013 at 8:48 pm in reply to: Geographic tongue and EDS #3935
    Jrl_3327
    Participant

    Hi Dr. Diana I checked mine that very next morning and I’m not sure if it makes a difference on what time of day you do it bc my morning one was sooo gross and thick way worse than the day before which I had done it around 5pm the 1st time and 9am the 2nd one. DRAMATICALLY different. 2nd one looked like thick snot. Ik gross right! I also checked both my daughters there’s looked similar to the photo’s in the video. I haven’t rechecked my son but I definitely will do so.. when the spit does do the nasty thing in your opinion what does that mean like what should I have my Dr check for?

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