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Everything posted by monica

  1. Kris, That's awesome!!!! so very happy for you Keep us posted on how it all goes!
  2. It looks like you might have EDS/other connective tissue disorder. If you are in the Chicago area..definitely go to Dr. Brad Tinkle..he is one of the leading experts for EDS. I just read his book and it is wonderful. I think they are scheduling into May for him right now. So, earlier you make the appointment, the better. As suggested, take a look at ednf.org..there's a great group on Inspire for EDS. You don't have to have a diagnosis to participate there.....
  3. Thanks for the suggestions Dana..I've sent you a private message. Thanks for the reminder Corina, will not elaborate on doctors experiences on the forum If anyone else has any suggestions, please let me know..Thank you!
  4. Thanks Racer! I can't go to Dr.Giuliani ( Insurance issues) and Dr. Susan Baser is not for POTS. I called her office and they said that the Information about her on that website is wrong
  5. Hi everyone, I'm so depressed and urgently need your help. My Insurance changed recently ( not in my control...can't do anything about it ) and my awesome Doctor who diagnosed me with POTS and was treating me doesn't take the new Insurance. I really need to find someone who knows about POTS asap. I can't seem to find anyone.... Can you please suggest someone who treats POTS in the Pittsburgh, PA area. Thanks so much!
  6. I fly a lot, most of the trips are overseas( more than 7 hrs long)..sometimes one after the other with a 3-4 hr stop. I have realised that if I'm well hydrated which means a LOT of water, I do pretty well and don't feel as jet-legged/fatigued later on too. I do have a drink or two so that I can sleep on most of the flight but anymore and I feel awful. I take an empty bottle of water with me to the plane and ask the flight attendant to fill it up with water. They usually willing do it but the last time I flew, the attendant was so mean..he made a face, so I said that I have a medical condition where I need to drink water all the time.... He made a bigger face, so I said that I have Dysautonomia/POTS...to which he sarcastically told another attendant that he had never heard of a medical condition that required you to drink more water..Sigh!
  7. Ephedrine causes Tachycardia...I have POTS and can't take any meds with ephedrine in it. The last time when I took some cold medicine with ephedrine ( this is before I knew I had POTS), I fainted a couple of times. It was scary! I also remember many yrs back I took some OTC diet pills that had Ephedra in it (the FDA eventually banned them ) and it caused severe Tachycardia...it took many hours before my hear rate went back to normal. Needless to say I never took those pills again I don't think you should take Ephedrine if you have POTS. What kind of Dysautonomia do you have?
  8. Rach,I've read about it too. I've had local anesthetic just once long time back and it worked on me, I think. On the other hand, pain-killers of any kind just don't work on me at all. I have tried almost everything and nothing works. I wonder if other people with EDS have the same problem?
  9. Thanks Chaos for the Link to this book..I'm going to get it This is the most updated article I found on EDS-Hypermobility type( though looks like it doesn't mention MCAS?!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/ Also, liked this article for managing pain and fatigue in EDS/Hypermobility syndrome: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.35483/full
  10. A Lot! Mostly every half hr or so, somedays every 15 min. I also feel very thirsty and drink a lot of water. Sometimes I think that's what I do the whole day...drink water and go the bathroom I have to try this SMARTWATER...looks promising!
  11. Chaos, I couldn't agree more with what you said. Naomi, maybe you can go to another good specialist who specializes in Connective tissue disorders? Fyi, most of my pain and hypermobility is in my neck, shoulders and upper back. My pain started with an injury/tear/subluxation ( I don't know what happened but I felt a distinct crack) in my upper back. Then it spread to my neck and shoulders after sometime and over the years now I get ankle sprains, pain in my hands and fingers. My Geneticist also wants me get testing done to rule out Stickler's syndrome, Fabry's disease and of course Vascular-EDS as the symptoms of all these Connective tissue disorders overlap each other.
  12. Naomi, I never considered myself to be super flexible either..yes, there are a lot of things I can do though which show my hyper-mobility but always thought that others could do it too I score 5-6 out of 9 on the Beighton scale -Both thumbs can touch inner forearm -Pinki fingers extend by more than 90 dgrees. -Both elbows extend past 180 degrees( one more than 10 degrees) --Can touch fingers to floor without bending knees ( I think I could touch palms when younger, now back very stiff?) The Geneticist didn't ask me to show her all this ( she was focussing more on the Beighton criterion ) but I do have additional examples of Hypermobility: -Can easily do the "Reverse-Namaskar" pose. - Can touch both hands behind back by bringing one over shoulder. - Positive Gorlin’s sign-Can touch tip of the tongue to nose. -Hyperflexion of big toes on feet - Swan neck deformities of fingers ( hypermobility DIP and PIP joints most fingers as well as IP joints of thumbs) I also have : -Positive Walker-Murdoch sign -Positive Steinberg-thumb sign though these are more to test for Marfan's than EDS. I also have thin skin with visible veins, easy bruising, flat feet and get ankle sprains frequently.
  13. Hi Tigerbomb, I agree that much more has been written about HEDS and Dyautonomia, maybe because CEDS is less common… I have been wondering about that myself. I suspect my brother also has EDS though his symptoms are not as bad as my mom’s or mine but he complains of pain, insomnia , anxiety and has sever GI issues. My mom’s brother who is super hyper-mobile, is in his 50’s and is completely pain-free…go figure! Mytwogirlsrox, Christyd, my reasons for pursuing a diagnosis of EDS were exactly as Issie and Tigerbomb described. I needed to know what was causing my pain all these years. My mom is also in a very bad shape, I really needed to get help for her too. She has horrendous, painful varicose veins, cranio-cervical instability, carotid-cavernous fistulas ( bleeding in whites of eyes), trigeminal neuralgia, multiple-awful allergies among other things. I want to protect my joints and prevent further damage and do all I can to slow the progression of EDS. I too was sick of being told it's Fibromyalgia/stress/anxiety/all in my head...I needed validation because deep inside I knew that something was very wrong......
  14. Thanks Issie! Hi Badhbt! Along with hyper-mobile joints, the Classical type has more skin involvement than the hyperrmobility type ( though the hypermobility type can also show skin manifestations since there is usually a crossover between the different types). Hypermobility type : http://www.ncbi.nlm.nih.gov/books/NBK1279/ Classic type: http://www.ncbi.nlm.nih.gov/books/NBK1244/ Only a Geneticist/Rheumatologist who has knowledge of EDS can differentiate between the different types. The Geneticist said that I have wide scars and very soft, doughy skin which I didn't know. I also bruise/get cuts easily and have prolonged bleeding. I don't know if she thought my skin was stretchy or not... I'm curious to see her notes when they send them to me.
  15. Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it. This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!
  16. Yeah! I've been trying really hard to find someone in my area who has knowledge of MCAS but no one seems to know about it. I think my mom definitely has it! How did you get a diagnosis of MCAS..was it locally or did you have to travel somewhere? Thanks!
  17. Hi Naomi! Yeah, Exactly! I have it sometimes and it just goes away and then a month later again! It's quite scary..like I'm getting electric shocks or something in my brain. Just recently started having it. My mom said she's been having it for years. The vibration in my foot started last year too.... exactly as you said..like a cell phone vibrating near my foot. The first time it happened I thought it was an earthquake or something, Lol ( I used to live somewhere earthquakes were common). Incidentally, I have been the most Potsie last year when I finally got diagnosed.... I was having really bad presyncopes left, right and center
  18. Hi everyone, I posted a while back about trying to find out if I have EDS. The Geneticist said that most likely I have EDS-Classical type and not the hypermobility type that my Rheumatologist suspected but she also wants me to get some Genetic blood testing done to rule out Vascular-EDS and Stickler's Syndrome. I just wanted to thank everyone here because this wonderful website helped me get this diagnosis. I was first diagnosed with P.O.T.S. and then read here for the first time about EDS. Started looking into it, one thing led to another and now I finally know what has been causing all this pain and misery all these years! No doctor could find out what was happening to me and I had been told I had Fibromyalgia. Thanks again everyone! I was wondering how many people here with P.O.T.S/Dysautonomia have EDS too? Is it common to have both conditions together? My Mom also has EDS and I suspect she has P.O.T.S. too.
  19. Hi Everyone, I finally have a diagnosis of Ehlers-Danlos Syndrome. Saw a Geneticist specializing in Connective Tissure Disorders and she confirmed it. Though she said that I have EDS-Classical type and not EDS-Hypermobility/Hypermobility syndrome that my Rheumatologist suspected. She also asked me to get Genetic blood testing done to rule out Stickler's syndrome and Vascular EDS. I have a question.....Recently, I have been having this strange vibration, almost electric-like feeling in my head. It's hard to describe..it lasts for only a few seconds but it's almost as if my head/brain is getting small electric shocks! Usually happens when I'm standing/walking. I was wondering if anyone gets something similar to this and if it's P.O.T.S. or EDS related or there's something else going on? My mom who also had EDS and possibly Dysautonomia ( has all the symptoms but hasn't shown it to anyone yet ) said that she gets it too. I also feel vibrations in my legs/feet sometimes when I'm standing but they very distinct vibrations and not the elecric-kind that I feel in the head..... Thanks!
  20. Thanks Katybug Let's see what the Rheumatologist says and I will try to see a Geneticist who specialises in Connective tissue dosorders too. Thank Issie Yeah! Absolutely!!! I tense up my muscles all the time..it's like I'm trying to hold my body together. Pain killers don't work on me at all but muscle relaxants do seem to work somewhat. I remember being very flexible as a kid but after I reached my 20s, all the pain and muscle spasms increased and I feel as stiff as a board. I found a couple of links that I'm thinking of forwarding to my Rheumy : http://www.ncbi.nlm.nih.gov/books/NBK1279/ http://www.ednf.org/images/stories/pdfs_medical/2009_11/2009_Tinkle_AJMG_PartA.pdf These articles mention that having a hyper-extensible skin is not important for a diagnosis of EDS. I hope it's ok to post them here Do you guys know of any other articles/info that can help me ? Thanks!!!
  21. Thanks Issie! Wow! so I might actually have EDS!!! I definitely want to get checked for MCAS too. How do I get tested for MCAS? Which specialist should I see to get it checked? I'm actually really concerned for my mom and want her to get tested too. My Rheumy is very nice and he said that he will get back to me after doing some research on EDS. If he says that he's not sure..what should my next step be? Is there any other specialist that I should go to.... I really want some answers as I have been suffering for years and so is my mom.
  22. I have been suffering for years from really bad chronic pain in my body ( especially in my back, neck, shoulders and arms...occasionally ankle, hips and legs also). I was diagnosed with P.o.t.s. and Fibromyalgia recently. After I joined this forum and doing some research, EDS kept popping up. So, I decided to see how much I would score on the Beighton scale and turns out I score 5/9. Asked my Rheumatologist and he said that I definitely have Joint Hypermobility Syndrome and will look into EDS and it's possible that I have it. I can also bend my fingers and toes in weird ways, positive for Steinberg sign and Walker-Murdoch sign, can touch the tip of my nose with tongue/do the Namaskar pose easily. get bruises/cuts easily and don't know how I got them, get petechiae, have a small, narrow, high arch palate with dental crowding, relatively flat feet, Slight degeneration in cervical and thoracic spine, TMJ problems, IBS, Prominent veins on hands, feet and now thighs too, Migraines, Possible platelet dysfunction ( tests are going on). Also, most of my body pain is on the left side where my joints are more hyper-mobile. My mom also has the same symptoms as me but has never been tested for P.o.t.s. She does have low BP. She also had an early onset of osteo-arthritis in knees, back pain, very bad cervical spondylosis, TMJ problems ( her jaw disclocates completely just on eating or yawning), extremely prominent varicose veins and recently is having issues using her left fingers (pain/difficulty grasping things),trigeminal neuralgia, gets large bruises, thin/ extra sensitive soft skin and VERY bad skin rashes and allergies, spontaneous bleeding in white area of eyes ( whole eye becomes red). I was reading that people with EDS develop early-onset osteoarthritis among other things and am getting worried that I might get all these problems too down the road. The only thing is that my skin is not hyper-extensible. It is very soft and thin though. My skin is also very sensitive and I get eczema/rashes sometimes. Is it possible to have EDS without the hyper-extensible skin? Is it possible that I'm in all this pain due to EDS/some other Connective tissue disorder? Thank you:)
  23. I was not taking any medications at these times , so definitely not medicine related. Also, had different kinds of food when it happened and have had the same foods later too to see if it's food allergy but I was fine. One thing though is that none of these foods were home-cooked..they were either from a restaurant or processed.
  24. My legs become itchy and burn after shaving too. I have to apply this natural bathing oil that suits my skin afterwards otherwise it itches and burns for days! Also, I have to use special soaps and moisturisers as my skin get itchy/ irritated easily.
  25. I take my BP with a Withings BP cuff and I too am unable to take get a reading on it when I'm the most symptomatic. According to my iBP app, my average PP is 28, highest is 50 and the lowest is 15 (This is obviously considering that I'm unable to take many recordings when I'm symptomatic). I feel the worse when my PP is below 20 and usually feel faint when it happens. The 2 times I was able to take recordings just when the presyncopes started, my PP was 18 and 19 respectively. Batik, I too have issues after meals... the last 6-7 times I had presyncopes/fainted, it was within 1 hr of eating. At first I thought that maybe it was because I'm having large portions, so I have been cutting down the portions drastically. But then it happened after eating a small scone, so I don't know anymore what is going on?! It's always the same symptoms during the presyncope... feeling hot/flushed/sweating, stomach pain/gas, nausea, ringing in ears and down I go...... I also get diahhorea/have to urinate afterwards.....
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