August 27, 2013 at 11:18 pm #4236
Glad the gastro appt went well. So you drove three hours? I would not be able to sit up for that long. What we have to go through for help. It might be worth it though to go back for the endoscopy. That way he is doing it his way, and especially since you like him. It is highly unusual for a doctor to help a patient off the table. They are usually out the room so fast. I have the same shakes and it drives me crazy. It was one of the first thing the geneticist noticed, was my tremor. Yesterday I went for an MRI of my neck, during it you can’t move or swallow. The poor lady scanning me had to repeat several films. I tried so hard, but the jerks are involuntary. My mom got in today to her cardiologist, and seemed to like him. He is quite worried about her heart murmurs. She has an echo in a couple of weeks.
I am glad you found out sooner that you have EDS. Maybe you will be able to slow your symptoms down and help your brothers. Did you every buy the hand splints? I am thinking about getting some . My thumbs keep popping out with random movements, and it really hurts. My PT even saw it happen while I was doing a wall exercise.
August 29, 2013 at 6:23 pm #4237
The 3 hour trip (6 hours total) did a number on me. I was in so much pain and I have been wiped out energy-wise ever since. My neck and lower back are still mad at me. I look forward to my upcoming appointments but I DO NOT look forward to the actual traveling part.
I use Oval 8 finger splints for my fingers but I haven’t found anything yet for my thumbs. I like the design for thumb splints from Silver Ring Splints but they are obviously not a convenient, cheap option. All other braces/splints I have found always immobilize the thumb and wrist which is good for the really painful days but I want to still have full use of my hands and just prevent hyperextension only. The best thing I have found so far is to use those skinny banadages/medical tape type things and wrap my hands up like I was going in for a boxing match. If I play with it just right, I can stabilize the joint while still having full use of everything. I wrap it around the thumb and loop around the palm a couple times and usually one finger to help hold the bandage in place. It can work really well until my skin gets irritated that it has a bandage on it. My thumbs have been driving me up the wall because they are not stable at all and anything I try to hold on to bends all of my fingers and thumbs backwards.
I hope some of that made sense. My brain is super stressed because my mother-in-law had a stroke today. I have no idea what condition she is in and I know at the very least that my husband will want to go see her soon. I would like to be able to go myself but I have had to miss out on trips in the past due to issues and I am in worse shape now than I was then. His family is over 1000 miles away so it is not a “pop in real quick” type of trip. And if he goes on his own, I have to be all alone for an unknown length of time. It is such a downer that my medical issues make this stuff so much more complicated. I would love to be able to show my support and be there for the family but I don’t know if I can. She is a wonderful lady and, even though I haven’t spent a lot of time with her, she is like a loving mother that my own mother never was/is for me. She is only in her 50s so she is still really young and I suspect it has to do with major surgery she had earlier this year to remove part of her digestive tract. She had a big blood clot develop after that and was on blood thinners for a little while. Fingers crossed she will recover and be okay.August 30, 2013 at 1:53 am #4238
I am so sorry to hear about your MIL Jen. I will pray for her. You sound just like me. I can be left alone for a length of time because I require so much help. It is a big source of guilt for me, and a fear. I used to be a very independent person and never asked help from anyone. Now I don’t recognize who I am anymore. I can’t handle a long car trip either. I spend most of my day laying down, and like you if I push myself I pay for it for days. (pushing myself is hardly anything). I hope your MIL recovers completely. This has to be very hard for your husband and you. Life can be so difficult and family is a gift. I know this has to be hard that your body won’t let you travel to be with her and your husband. Make her a video sending your love. I did that last week when my uncle was in the hospital. He really appreciated it. ((Hugs)) as y’all are dealing with all of this.
ShondaAugust 30, 2013 at 2:08 am #4239
Thank for the info on the hand splints. Have you seen an orthopedic doctor yet? You may have to go to more than one. Since they tend to specialize in only one to two areas. Sometimes people go to physical medicine doctors because they focus on the whole body, but I did not have the best experience with them. My rheumatologist was only good at ruling out an auto immune disease and knew nothing about EDS. In fact she got nasty with me when I asked about EDS. She ask why did I think she could diagnose EDS? I had to remind her that sometimes proving a disease is excluding other undying conditions. She grudgingly ordered the labs for me. I need them for both my ortho and geneticist. I wonder why they go through years of medical school if they don’t really want to help people.
ShondaAugust 30, 2013 at 6:11 pm #4240
I want to smack that rheumatologist for treating you so badly! Argh! What a jerk. I haven’t been to an orthopedic doc yet. I am hoping to try to see a rheumatologist soon and see if the one here in town knows anything about EDS or if they are willing to learn at all. I’m still trying to learn about all of the different people I have to see. There’s the geneticist, gastroenterologist, neurologist, cardiologist, rheumatologist, orthopedic docs, eye doctor. . . uh depending on what else is going on maybe an endocrinologist? Are there others? Oh maybe pain specialists and physical therapy? So far I have only seen the gastro. I don’t count the first neuro because that guy was terrible so I would rather pretend he doesn’t even exist. I see another neuro in about a week and a half and he has a lot of experience with autonomic dysfunction and some neuromuscular stuff so I am really hoping to get some more info nailed down. The joint and muscle pain I have been having has been so much worse lately so I probably need to get in to a rheumatologist before I see the geneticist in November. I have a follow up with my primary in October so I can at least address this stuff with her then if nothing else. My lower back hurts all the time and makes everything difficult. Walking, sleeping, even sitting. I put the head of my bed up on risers to help with heartburn but I’m trying to figure out if it might be irritating my back a little. My neck has finally eased up a little bit after days of awful joint pain that felt like my skull and spine were scraping each other. Now I am back to my regular day-to-day headache and neck pain. Everything hurts and seems intent on staying that way. *shakes fist at body* 😉
Thank you for the concern for my mother-in-law. She is in surgery right now to essentially “glue the leak shut” that was causing blood to pool on her brain. Everyone seems confident so hopefully everything will go well and she will be okay. Whenever my husband had left me home alone (either for deployments or when seeing his family on his own because it was easier), I would have a full blown anxiety attack about feeling like I was in over my head and couldn’t take care of things. When my husband had to go for deployments that lasted for months, I actually moved back in with my parents for the duration of the deployments because the stress of being alone was too unbearable. I am fiercely independent so that is not fun to deal with. Now, the whole thing would be even scarier because I have even less capability than I did before. At least now I am on Zoloft and have some in-the-moment anxiety meds to turn to if I am desperate. I can’t imagine how badly an anxiety attack might hit me now that all of this other stuff has kicked up. *shudder* I hope I don’t have to find out.September 3, 2013 at 2:09 pm #4250
Hi Jen, sorry I have not written back sooner. I have not been feeling well. I think you have the list down. I see an endocrinologist in a few weeks, so I hoping for it to go well. I have had to wait a long time. She is the person my dermatologist wanted me to see following my positive skin biopsy. The endo is at the medical school that I use to work with, and they are hard to get into. I have never found a good neurologist so I gave up. Dr. Diana’s husband ordered my head and neck MRI. I am waiting on those results. I see him now for my eye problems. I am already in need of bifocals. Argh….and I not even 38 yet…argh…. At least I have a good eye doc, and one that knows about EDS. Do you get bad headaches too? You could try to find a O.D. In your area that knows about EDS. They are able to treat hydrocephalus. Dr. Driscoll sent me for an upright MRI. It is better for catching the Chiari I malformation. I swear I see one on the images, but I am not a radiologist. Plus it may be wishful thinking. I am also sure I see evidence of the external hydrocephalous. Unfortunately the day I went was a day I felt decent. It was during my period, and during that time I had less symptoms of hydrocephalous. A few days latter it was back full force. I am trying to see if I have a pattern to my symptoms or if they are random. One thing I do is salt load. It is something my body craves. I notice that my mom and her sister do the same. My mom salts her fruits. Then last week my son told me that he feels dizzy sometimes and partially losses vision, just like I do.
How is your MIL? Did your husband have to leave to go be with her? How are you holding up?
ShondaSeptember 7, 2013 at 9:42 pm #4308
I’m sorry for the delay in getting back to you. Goodness gracious it has been a crazy week! Well, as I had mentioned before, my mother-in-law had brain hemorrhages. My husband decided to fly out to Maryland to see her. We had bought his ticket and were prepping for him to leave Monday morning. The Saturday evening prior to that I ended up having a massive anxiety attack. It came on so suddenly. I was reading a book and then BOOM convulsions, nausea, vomiting, the works. I became terribly afraid of what would happen to me if I had to deal with that all by myself for a week so I bit the bullet and decided to go to Maryland with my husband. Of course, just a handful of hours after we had purchased his ticket, the price for my ticket was more than double! Ack! After that I had to take a second dose of Ativan (since the first one had been thrown up already) and melatonin to attempt to knock me out or at least relax my muscles enough to calm down the attack. I was finally able to get a little rest. The Sunday before the trip was spent trying to find ways for my cats to have enough food and water because we were not able to have someone come in and check on them each day. I was terrified that my 18 year old cat would die from the stress of being alone. Fortunately, she made it through okay!! Phew!!
The trip to Maryland was bittersweet. The flying and dealing with various people and nurses went well (take that social anxiety!) but my mother-in-law had definitely suffered some damage from her brain hemorrhages. She seemed eerily similar to the dementia I had before I started the Zyrtec/Zantac routine. She couldn’t connect words, remember the names of things, she would go in and out of lucidity, etc. When describing who I was to a nurse, instead of saying “This is my son’s wife” she called me “This is my husband’s daughter.” She called a chair a “table” and lots of stuff like that that clearly shows her brain is not communicating properly. She improved each day and you could tell when she was starting to fade again because she would start to get tired and confused. If she was fully awake and alert, she functioned much better. She developed several clots in her leg that leg to a procedure to put a filter in a vein to prevent the clots from reaching her heart, lungs, or brain. She passed out one day after trying to stand up and I noticed that she was having POTS-like symptoms. Her BP remained on the lower end of good and would raise when she sat up and then drop when she stood. Before she fainted, she had just taken off compression stockings and got up off of her hospital bed quickly so I think it was all just a POTS-like BP drop. Her tests, physical therapy, and echocardiogram all looked good so there was no evidence of anything else wrong in that regard. The doctors and nurses are very very hopeful that she will make a possibly 100% recovery. I think blood “just” pooled on her brain instead of causing any actual damage to tissue. Her stay in the hospital kept getting prolonged day after day so I unfortunately wasn’t able to see her actually leave the hospital but she is home now. I took diligent notes when my father-in-law was absent so he could have the peace of mind that all info was covered and he knew what was going on. I stayed by my mother-in-law’s side the entire time save for when I was pulled away to get food or forced to go back to the hotel to sleep. I had a bad insomnia night that caused me to be up for over 30 hours straight only to follow by a 14 hour pass-out session the next night.
My husband and I flew back home on Friday and I am insanely wiped out. I am in so much pain and so tired. I’m mainly relieved that my cats are okay. I would be devastated beyond belief if something had happened to them. Now I am simply trying to get whatever recovery time I can before another painful 3 hour drive to and from St. Louis for my appointment Monday morning. Hopefully the neurologist will be nice and helpful. And fingers and toes crossed that the 6 hour total drive won’t cause weeks of pain like the last one did. Yeesh.
I’m sorry you haven’t been feeling well. 🙁 I do indeed get absolutely awful headaches. There is the constant everyday types, then flashes of intense ones or annoying ones, the migraines that last awhile, the ice-pick ones that feel like they are stabbing through my eye or temple, and some other types.
I can crave salt too. I can bounce between craving salt and craving sugar. I try to be really careful because I will feel super sick if I have too much of either one.
I hope your upcoming endocrinologist appointment will go well! I’ll be thinking of you and sending good doctor vibes your way!September 11, 2013 at 11:00 pm #4326
Wow what a week! I am sorry you went through all that, but I am glad you went and were there for your husband and both his parents. It had to be a great comfort to them. Now I am really suspicious that you husband and MIL have EDS too. What does your husband think? I hope your MIL is still doing better and better. How did you do during the flight? Do you have trouble with pressure changes? I know this is pathetic, but I have not been on an airplane since I was 17 years old so I don’t even know how my body would respond to the pressure changes. Sorry you have so many anxiety issues it’s so common among EDSers. I notice my anxiety has gradually gotten worse over the years. I feel like asking my Psychiatrist for something to help with it. Dr. Diana had a hypothesis to why we have so much depression and anxiety in EDSers, but I can’t remember what it is right now. I can’t even remember where I read it.
I am so glad your cats are fine. I got my first cat five years ago and she is such a comfort to me. She knows when I don’t feel well and she will watch over me. She is siting here right now. We left her alone one night and when we returned she was ticked off at us. We were gone less than 24 hours, she had plenty of food,water, etc.. BUT she did not care. We left her alone and it was pay back time. We have a dog too. He is loyal, protective, loving, but not very smart, and he can not see well. I love him too, but my cat is more snuggly and she is loyal to me. Most of the time. 😉
How did your Monday appointment go? How are you feeling now? One appointment can wipe a person out for two days.
I have the feeling you have hydrocephalous and maybe if you can get that diagnosed you can start on Diamox a get relief from the headaches.
I feel bad if I overload on sugar and the salt will sometimes make my headaches worst. It is a hard balance. I am not even sure it works. It just more fun to give into cravings. I hope you are doing well.
ShondaSeptember 12, 2013 at 3:35 pm #4332
The flights were okay. I had a bit of the typical ear pressure but nothing too bad. I haven’t been on a plane in years so I wasn’t sure how it would go. Oddly enough, I had a lot of trouble with elevators. I could feel them coming. I would get a weird pressure/pulling sensation inside of me & felt really woozy. Simply from the elevator arriving at the floor I was on. Sometimes the woozy feeling was stronger outside the elevator than it was inside. Very odd.
Snuggly kitties are the best. I love ’em.
My appointment. My oh my, that appointment. It started out well enough but I have been very frustrated ever since. He was polite & seemed interested in my symptoms. He asked a lot of questions & I had a lot of the symptoms he mentioned. I felt good about all of it in the beginning but I started to feel uneasy as the appointment went on. By the end, I was not happy at all. Even though I have so many symptoms, he said he is not seeing an autonomic problem. Okay, maybe I don’t have something typical or obvious and maybe not typical POTS or something but there is absolutely something wrong. I was expecting the neurological part of the exam to be normal & it was. He said I responded almost “above normal for someone so deconditioned & dealing with all that I am.” I did the walking up & down the hallway thing. I was having a good day & was able to do more than I can on my off days. I was still shaky & wobbly and, after a brief jog that I was AMAZED I could do, I was very weak & my tremor was dramatically worse. Apparently none of that meant anything to the doctor though.
I even showed the guy a picture of my foot when it turns purple-grey. I had my hand in the photo as a baseline to be compared to & it is so obvious. The nurse was great. She was very caring & took great interest in my symptoms & was shocked that my foot looked so bad in the photo. The doctor, however, glanced at it & said “Huh, yeah look at that.” I showed him my MRIs (I have to get another copy of the disc because he didn’t give it back) & he spent less than 5 seconds looking at it & said it was “normal.” Although I have symptoms that fit hydrocephalus, cranial instability, and all of that stuff & even Barb from this forum noticed those things when she was kind enough to look at the MRIs for me.
I said that I have exercise intolerance, heat/cold intolerance, that my heart rate goes very high with little activity, etc. & his answer was that I need to start an intense exercise regimen that would have me running on treadmills in a month & keeping me at my max cardio heart rate for at least half an hour every day of the week. Um…did he pay attention to the intolerance stuff & the fact that I have terrible joint pain? Doing that kind of exercise isn’t really an option for me.
He did not believe that I have any autonomic or neurological issues but was willing to put me through another Tilt Table & some other type of autonomic testing. I’m uncertain if I even want to do that now because in the summary paperwork he gave me at the end of the appointment he listed his main impressions. What was his most likely diagnosis for me? Somatic Hypervigilance. Meaning I am doing it to myself. That it is anxiety & that I am just being a hypochondriac. One thing I can try to cling to is that he did mention EDS in the paperwork. He said I had “joint laxity & hyperextensibility consistent with Ehlers-Danlos Syndrome.” So I have that on paper now but it is unfortunately buried in the paragraphs & not at all listed in his concerns/diagnoses.
He gave me propranolol which is going well so far. I have noticed that my tremor is less. I have actually gotten some sleep which is helpful as well.
I was so frustrated after dealing with all of that. Especially since it takes driving over 6 hours total & dealing with so much pain in order just to meet with that doctor. I went from extremely angry to very sad & worn out, crying, back to angry, & so on. It’s one thing for a diagnosis to take time & be a long process of tiny steps. What gets me is when I feel like something is so obvious & yet I am treated like I am insane & making it all up. I know the doctor doesn’t know me at all so he has no idea that I do not try to get attention, I don’t talk myself into a tizzy, I don’t over-react or play things up or anything of the sort. My entire life, I have always been blown off & treated like the exact opposite of the type of person I really am. If I ask for help, it is because I have exhausted all other avenues not because I want attention. If I bring in a list of symptoms to the doctor, I am expecting them to use their professional skill to help decide what is important & not use it as “proof” that I am “looking for a problem.” That’s their job, isn’t it? Don’t they always say “Tell your doctor everything because you don’t know what may be important & it could be info that will point them in the right direction”? I didn’t even list everything & I don’t list every little everyday thing but the things that are obviously symptoms.
And he obviously must not have a proper understanding of EDS to dismissively refer to “party tricks,” acknowledge that I have it, then not take that into account in my diagnosis. There seemed to be a strong disconnect. To give him the benefit of the doubt, he seemed like maybe he can’t process more than one thing at a time so maybe he was just too confused. I will not trust him to lead the way but maybe he might follow guidance from another doctor who tells him exactly what to do. I don’t know. I’m not exactly jumping at the chance to continue dealing with him.
My husband says he doesn’t want to deal with these doctors anymore & only wants to look at the top-of-the-top specialists. He wants to try to get me in with Dr. Tinkle. I see a geneticist in Nov. who I have read about in the Inspire forums & a few people have experience with her, said she diagnoses EDS, is good, etc. Fingers crossed!! The journey continues.September 12, 2013 at 7:12 pm #4335BarbaraParticipant
I’m so sorry to read of your recent ‘doctor’ experience, I feel so sad for you (and fully understand your anger and frustration) as will many others on this forum, who have been treated (or rather, mis-treated) in exactly the same way.
You went to him for an “expert” opinion (which he undoubtably claims to be?) but unfortunately, an opinion based on gross lack of appropriate knowledge is not worth the paper it’s written on, technically in-valid, yet it’s treated by other medics who read it, as highly valid – immoral really!
(UK)September 12, 2013 at 8:42 pm #4336
Yes, the appointment was frustrating indeed. It helps to know that it isn’t just my same old bad luck with people and is unfortunately a shared and common experience among EDSers and other chronically ill/zebra folks. It breaks my heart to think of all the people out there who desperately want help but get slapped down. It is beyond ridiculous that there are not more safeguards in place to act as patient advocates. A doctor is just a person with all of the flaws that that entails. Some will be great while others are not. A doctor’s word does not change reality to suit their views. A doctor can be wrong. A doctor might be well-intentioned but lacking information. A doctor can be arrogant and have a god complex. They can be so many things. Yet what options are left for patients? To simply sit there and not ask any questions? No thank you. Not for me. But all of us can be the pioneers. We can be the ones who fight in order to make it easier for the people who come after us. No one should be made to suffer alone. I will not accept that as long as I have a breath left in my zebra body.September 13, 2013 at 12:01 am #4338
Don’t let that doctor get to you. I am sorry it was a days trip and a waste of time. He obviously doesn’t know anything about EDS, and I find that most neurologist have that God complex. I think it’s a prerequisite for the job! On a sidenote when I worked at a hospital in Dallas, which is home to a big medical school, my friends and I were walking back from lunch when two neurologist came charging down the hall. They pushed us to the side and said ” out of our way brain surgeons coming through”. Believe me they were rude. Instead of going around us they push between us. They were not one their way to an emergency. They were just being uppity. 😛
I just learned today, from Dr. Diana, that I do have hydrocephalus and you sound just like me. Plus Barbra knows her stuff. I would get a good eye doctor in your area to prescribe Diamox for you. Call that crappy neurologist back and demand they send you your MRIs back. he has no right to them! Find an O.D Optometrist in your area. They can look at the MRIs and your optic root and tell that you have the external communicating hydrocephalus. Maybe you could even see Dr. Diana and her husband. I know it is a trip, but maybe it would be worth it. Or you could send her your MRI’s and pay for a consult. Maybe she knows a good doctor in your area.
I have problems in elevators too. I was wondering if all EDSers have a problem with elevators, because as far as I know nobody else normal does. I wonder if it’s due in part to hydrocephalus. I get faint and dizzy.
Your feet sound like Raynaud’s phenomenon or sign. I have it. It is also seen in RA and Lupus. Another EDS sign and part of the dysautonomia issues.
Hang in there friend there’s a lot of bad doctors out there and I know they get a person down. I learned from years at the teaching hospital that doctors are just human and most of them are not very smart. HEY do you know what they say? What do you call a doctor that finishes last medical school?… doctor! 😛
It is not in your head it’s just part of this disease! I’m praying the Geneticist that you’re seeing is a good, and one that will help manage your EDS. Then you can finally start in some relief! It always feels good to have that validation and the physical documentation that you have Ehlers-Danlos. Then you can be like 😛 I told y’all.
The first geneticist I saw wasn’t so great and she won’t manage all my health issues. All she did was diagnosed me. Now what I’m doing is getting the kids into a different geneticist one that it actually is proactive in the management of EDS. So fingers crossed it’s quite a ways away both time and distance. hopefully, I can get the kids in some sort of preventive treatment plan. My PCP feels I will gain help with my conditions through my kids appointments.
How is your MIL? I wonder if she has EDS? The last I heard. It is now not a rare disease, but a rarely diagnose disease! The latest estimate is EDS affects 1 to 10 percent of the population.
ShondaSeptember 13, 2013 at 7:47 pm #4345
My MIL is doing well. Each day is better than the last. I haven’t learned much about the family yet to try to piece together an EDS picture but I am fully convinced now that my husband has it. He has stretchy skin, paper scarring, poor wound healing, and using Dr. Tinkle’s book about Joint Hypermobility has helped me pinpoint some other symptoms of his. When he was younger, he could stretch his arm behind his head to the point that his left elbow could touch his right shoulder. In one of Dr. Diana’s videos, she mentions pulling on the arm and seeing a little dip in the shoulder area. My husband’s left shoulder does that. His ribs/sternum crack very loudly when he stretches his arms above his head, his ankles bend outward, he tries to pop his knee by twisting it sideways, he had Osgood Sclatter’s, he could sit in the W shape, he could raise his feet near his head, he could pull on his knees to create the floating kneecap thing, he has sleep apnea even though he has never been overweight in his life, and the IT band in his left leg is solid as a rock from being super irritated. His legs turn outward and his left leg ends up twisting so much that his foot will point to the side instead of in front of him and he won’t even be aware of it. His IT band was trying so hard to get his leg back in position that it is now a big tight, painful mess. It was hurting him so bad last year that he couldn’t even walk. I’ve found that his ribs and shoulders also seem to collapse in on themselves when sleeping like mine do. Having pictures to point to and watching some videos on Youtube helped him remember a lot of things that he could do. He isn’t too badly affected as far as pain and weakness goes just yet. I’m hoping to get the diagnosis process started for him soon so that everything else can get checked out. Especially his heart. Sleep apnea and EDS can be rough on the heart.
Thanks for the tips about optometrists! I have never been to one in my life and I am really curious to see what they think about my floaters. I’ve had them since I was little but there has been an increase in the past 10 years. If I look at a white surface, I will see sooooo many floaters. There is one that has always been in the middle of my vision and there have been a couple days where it will line up with my line of sight perfectly so it would cover whatever I was trying to read. I ended up reading with peripheral vision which is an odd experience. Thank goodness that is not it’s standard position.
I was having a decent couple of days and I was curious if a pattern would hold true. It seems like it might be. Over the past months, I have noticed that I might feel okay-ish for 3 days to under a week. Enough so that it is dramatically noticeable of “Oh! I can actually get up and walk without too much trouble. I’m only feeling a little pain instead of lots of it. My balance is okay too” and then it inevitably would fade and the symptoms would return. Starting yesterday, pain and fatigue started creeping back in. I’m curious to see if the propranolol will change anything about the intensity of the returning symptoms. It’s too soon to tell just yet.
Oh! And I got my 23andMe results! I have to poke around a bit but I do have a potential mutation in an MTHFR gene so I’m intrigued to see where that may lead. Lots of work to do! 😀
I hope everything is going well in your neck of the woods!
—JenSeptember 16, 2013 at 9:49 pm #4356
I am down to taking one day at a time. Sometimes hour by hour. I have only a couple good days a month. I will be starting, again, in a week with a therapist. Three of my doctors keep telling me to see a therapist again. I gave up going after five years because I felt even worst. Especially since they are normal working persons and are not living with a debilitating disease. They never understood and made dumb insulting comments. I will be trying a new lady through my church. I have been diagnosed with hydrocephalous and will see an Ophthalmologist at the end of the week. He will prescribe Diamox for me. He is the doctor that dr. Diana’s and her husband referred me too. They have been such a help. Too bad you can make a trip here.
The men in my family that have EDS do better that the women. I think because men have better muscle mass, and their joints are more stable.
I have a lot of floaters too. And I remember them as a kid too. When you grow up with all the weird symptoms they are your normal. I think that is why we go undiagnosed for so long. There was no way I could tell one doctor what all my symptoms were without them committing me. Lol. I focused on my biggest problems so I did not scare them away.
Let me know how you like the 23me test. I am curious about it, and if it is worth the cost.
Glad your MIL is better each day.
September 21, 2013 at 2:07 pm #4406
Oof, I hear ya. The comments some people make, even if they are “well-intentioned”, can be . . .not very helpful. I hope you can find someone that you feel respected by and with whom you can feel comfortable and relaxed. I keep meaning to go back to a therapist I was seeing last year. Especially now that I have the frustration of unhelpful doctors in the mix. I hope you can find someone who has some familiarity with chronic illness. It’s odd how Depression, Anxiety, and other illnesses that therapists are familiar with can be chronic, yet they might not be able to wrap their heads around other chronic forms of illness. Go figure.
I do think 23andMe is interesting. Geneticgenie.com can do an analysis of your 23andMe data and can put together a chart that is easy to understand. It does a methylation chart and a detox chart. It lists a certain number of genes and they use a color code of green, yellow, and red to indicate the level of potential issue. It helped me find my MTHFR info. I couldn’t find it on 23andMe but Geneticgenie made it nice and simple. As for info from 23andMe itself, I am still poking around trying to figure out exactly how much information I can get out of it. There is plenty of raw data to work with and they list a number of conditions to check your risk as well as carrier status. That can be helpful if any of those conditions are relevant to you. I have suspected that I have heart issues and it turns out those are the things that I have a highest risk for. My husband has a family history of cancer and has himself had two cancer scares this year alone and 23andMe listed that as his tops concerns as well. In the 23andMe community, I forget the exact title for the post but someone had been doing a study about how certain gene mutations seem to show up more often in women who have miscarriages. It’s been a little while since I looked at it but I believe my husband has the gene involved with that and his mother had multiple miscarriages so that matches up. It’s up to you if and when you want to try 23andMe but I think it can be helpful at some point at the very least.
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