Forum Replies Created
December 26, 2012 at 1:02 am in reply to: Fingernail moons! Did you lose yours? Mine are BACK!! Vid is out! #3257
I have moons on my thumbs but no other fingers. I am glad that you are seeing improvements!
Dr. Diana, I am so glad that you posted about getting your hair washed at the hairdressers. I cannot lay my head back to have my hair washed. My hair dresser also has POTS and hypermobility (when she first started fainting and such, I told her that she might have what I have and she brought it up to her doctors and was diagnosed very quickly). She can’t have her hair washed like that any more either. We both end up really sick and it hurts our necks really bad. We lean our heads over the other way with our knees in the chair instead of our rear ends. It is really nice having someone else around that can understand what it is like. I even grew up with this girl. I hate that she also has it. I don’t know how on earth she continues to work and being upright all day long. I can’t do that.
For all the other posters who talked about the double vision and blurry vision, I also get that. It comes and goes throughout the day, but it is mostly when I am fatigued from over doing it or when I first wake up. I also see a lot of spots like white sparkly glitter or gnats or a big dark spot in my peripheral vision, strobe lights in the dark, and I lose my color vision/go completely blind for short periods of time. I sit when I go completely blind, because I assume that it is a precursor symptoms to a fainting spell. I actually really enjoy how neat the loss of color vision is. It usually happens after coming inside from being in the bright sun. I don’t know if that is normal or not. I have not had my eyes checked, but it is on my “to do list” if I can get my PCP to refer me (insurance needs a referral to pay for it).
I had an MRI today, since I have trigeminal neuralgia and glossopharyngeal neuralgia. The results will be back in two days, but I won’t know the results until January 7th, unless there is an emergency result in the MRI. I doubt that to be the case.
Most of my symptoms for the unusual stuff are on my right side. I have never closed one eye and then the next to see if my strange stuff is just in one eye or not. I will do that in the future. Thanks for that advice, guys.
I also have the ringing in my ears and hearing loss which I haven’t been tested for, though I keep bringing it up with the doctors. I guess they are just prioritizing my symptoms. Hearing loss isn’t as big of a deal as some of my other symptoms, like the excruciating pain in my face and neck. I don’t even bother to put headphones in my right ear any more because I can’t hear very well with it anyway. If I put the headphones in my right ear only, I need the volume to be all the way up. If I put the headphones in my left ear only, the volume can be medium level and I hear it just fine.
I have tried to be put on Diamox, but my PCP can’t prescribe it, because it would be used off label. She is actually a physician’s assistant so she can’t prescribe off label, but I really enjoy being seen by her. She believes my symptoms are real and spends a great deal of time with me during visits, so I am going to continue going to her. I need to find a doctor who can prescribe it though. I don’t really know how to bring getting prescribed Diamox to another doctor. I don’t even know which field of doctor I should ask. I might put my husband up to that task. 🙂
I would even pay for a percentage of the T-shirts that are made up, so every dollar spent of that percentage would go to The Driscoll Theory research and such. I know of a place that does a great job on the T-shirts and I could mail them out to people once they are made up.
Thanks for helping out Sunshine! I will be thinking of fundraising things, but I think making up T-shirts would be pretty cool. We could sell them from the site and maybe some of us can advertise them on our other social media sites like facebook, twitter, youtube, reddit, etc. If anyone is interested, I can work on some designs and I would encourage others to work on designs as well and then we pick a winner or two.December 10, 2012 at 2:27 pm in reply to: Facial/Throat/Eye Pain/Vision Problems/Infertility #3208
In 2005 I was told that I have TMJ, but in 2010 my orthodontist said that I do not have TMJ. I have lost my gag reflex for the most part. I know I don’t have an abscess or any type of dental thing going on with it. Maybe it is the intracranial pressure stuff pressing on the nerves.
Thanks for your reply and the “good luck”!
Love him! He is more aware than most of our doctors FOR SURE!! 🙂
This is my service dog!
Not everyone likes him and threats against his life have been made in public places. Here is another video clip about him.
I have those as well. When I was a child my mother took me to the doctor about the “white freckles” and she was told that it was from a fungus. The doctor told her that I could use a special soap to get rid of them but that when I went back out in the sun, they would just reappear. I never tried the soap. The red spots, which are tiny and remind me of being poked with a red ink pen, were not numerous until more recently. Now I have them all over me but no one else really seems to notice them. I know nothing about either of the spots but I did want to let you know that you are not alone. I have been wondering if they were tied into everything else as well.
I do weight lifting. I have a lot of videos of it on YouTube. I can’t do it every day but on good days I love it!
I’m on my phone typing and I make a lot of mistakes. I meant to say that my family members sound like you in the list you provided.
A rheumatologist or geneticist would be able to diagnose you. I just found out that I have a type of joint hypermobility between EDS type 3 and Benign Joint Hypermobilty Syndrome. My other family members should more like you. I ended up getting POTS and then cascade of other medical conditions. I am really sick, but not from the joint hypermobility. The joint hypermobility issues just causes joint pain and it can he harder some days to weight lift. My joints give out before my muscles.
My C4 levels came back low again and the C1 inhibitor level was normal. I go to the doctor on Tuesday to discuss the results.
Because it might help someone else out who reads through the post, I am going to post the print out that my doctor sent me and my PCP.
Patient was referred for initial genetic evaluation of joint hypermobility, particularly Ehlers Danlos Syndrome (EDS). There are several types of EDS with the classic type being a connective-tissue disorder characterized by skin hyperextensibilty, abnormal wound healing, and joint hypermobility. EDS hypermobility type (type III) is characterized by joint laxity with soft skin and easy bruisin, but other organ systems (especially gastrointestinal and cardiovascular) are frequently involved. It is distinguished from EDS, classic type, by the more significant skin and soft tissue manifestations in the classic type. As patient did not have widened atrophic scars or delayed wound healing, we were more concerned about EDS type III. However, patient’s Beighton score was 4/9 was not indicative of EDS which requires Beighton score of > or = to 5/9 for diagnose. We do believe that patient has a joint hypermobility syndrome and meets diagnostic criteria for benign joint hypermobility syndrome (BJHS). The major criteria for BJHS include a Beighton score of > or = to 4/9 and arthralgia for greater than 3 months in greater than 4 joints. Recent reports in the literature have commented on the phenotypic similarities between EDS joint hypermobility type and BJHS. Patient has many of the findings associated with EDS type III including POTS and gastrointestinal involvement (GERD and gastroparesis). Based on patient’s examination and medical history, we believe that she may have a phenotype that lies between BJHS and EDS type III. Thus, we feel that patient would benefit from the same surveillance criteria used for EDS hypermobility type which include:
1. DEXA scans every other year if bone loss is confirmed.
2. Echocardiogram every 5 years in adults with normal aortic root diameter.
And then a list of things to avoid to keep from messing up my joints and things to increase bone density.
Height: 156.4 cm (15th percentile)
Weight: 40.7 kg (<3rd percentile)
Head Circumference: 51.3 cm (1st percentile)
It does say within the report that my skin was smooth and velvety and she recorded that my skin stretched 2 cm on the volar surface of my forearm, instead of 3 cm that I thought she said.
I just thought of something. A person gets a hangover because of dehydration. I don’t know how much water you drink each day, but maybe an extra glass could help. My frequent spells were in the summer time when it was hot and maybe I was a little dehydration or something. Idk. It wouldn’t hurt to try a little extra water though.
The dizzy, spinning, falling through the floor or mattress feeling was a common thing for me for quite a while a few years ago but now it is a rare occurrence. I have no idea what caused it or what made it better. I know that doesn’t really help you but maybe yours will get better on its own like mine did. I still have the headaches with laying down though. I have actually been waking up with headaches almost everyday for the past month or so.
I do get really tipsy feeling every time that I eat but I don’t feel like I’m falling or spinning around while floating like I do with the laying down thing. Eating feels like I had 2 drinks and the laying down sensations felt like I had about 5 to 7 drinks. That said, I am a lightweight and get cut off way before others do. Lol.
Since you compared it to drinking…