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Lab-Scientist-LadyParticipant
Hi,
What you have described sounds like POTS. Can you show your mother this website and the information on POTS?I would suggest a cardiologist for the diagnosis. You mentioned pain. Do you think you have EDS too? My first signs of the disease was all the orthodontic, dental, and gum problems. In addition I had orthostatic intolerance with the dizziness and fainting and I had abnormal scarring and healing. Then as a teen I had joint subluxations. Do you have other symptoms? If you think you have more going on a geneticist is the person to go to for a diagnosis. Welcome to the forum. I hope you can get help.
ShondaLab-Scientist-LadyParticipantYay! The Dricolls have been such a big help to me. Have a save trip and welcome to Texas.
ShondaLab-Scientist-LadyParticipantI understand your frustration and I am so sorry. You are not alone. I don’t know how it works in Canada, but I hope you can find another doctor. Have you fill out dr.Diana’s symptom check list? Maybe that could help. Prayers and hang in there.
ShondaLab-Scientist-LadyParticipantHonestly, I’ve never heard of someone’s blue sclera getting suddenly worse before. Interesting!
I think I have already reported that I don’t have blue sclera, well guess what – I DO !! – but it’s only a recent thing. Believe me, I would know if I’d had it before, as I have been photographing and videoing the weird things that happen to my eyes for years.
Another strange thing about it, is that it’s only one strip of one eye. I heard an explanation of blue sclera (maybe from your book!) as being a thinning of the top layer, where the eye is white. So is this perhaps another collagen related thing ?
Regards
Barbara
(UK)Hi Barbara.
How are you? My kids and I have blue sclera, but like you I did not notice it until this year. I find there are times when it is more obvious than others. Like when I have a bad headache. Maybe it is because my eyes are more blood shot. I brought up the kids blue sclera to their Pediatrician, mind you this is before I knew I had Ehlers-Danlos, and he told me that it was common occurrence in kids because they have thin sclera. I was fine with that until I learned about eds. Plus, combine it with all their other symptoms, and I know it is more than the kids have thin sclera. So I think your theory is right, and it is a collagen thing. Plus blue sclera are seen a lot of other connective tissue diseases.
ShondaSeptember 13, 2013 at 12:01 am in reply to: Newbie looking for advice about symptoms and appointments #4338Lab-Scientist-LadyParticipantHey Jen,
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. ๐
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! ๐
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 ๐ 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.
ShondaLab-Scientist-LadyParticipantHy everybody,
I`m a female from Germany with EDS (hypermobile-type).
I read in the Theory of Dr. Diana
http://prettyill.com/downloads/Dr._Diana_Theory_rev_03-2011.pdf
on Page 5 this sentence:
This may be why vasoconstrictors and abdominal binders ease symptoms for many EDS patients.What kind of vasoconstrictors does Dr. Diana mean?
Later in this Theory she writes about Diamox. Is this the vasoconstrictor?Greetings from Germany
Greetings from Texas. I am on of the weird EDSers that can’t use an abdominal binder because it makes me nauseous. My theory is that it puts pressure on my vagus nerve. I throw up more than anyone else I know. I have to cary barf bags with me. I, like the other EDSers in my family, rely on caffeine. I also use a strong cup of joe when I need to get my bowels to move. I have gastroparesis followed by diarrhea so it is a balance act. I also tend to salt load. It is not something I do on purpose, but it is something my body craves. I notice other family members do it as well. Our doctors are always surprised by how low our blood pressures are. I just recently was diagnosed with EDS and these things were just the adaptions that my family and I made with out knowing why. Recently I have noticed that caffeine does make me more anxious. I think I would try different things one at a time and see what works for you.
ShondaLab-Scientist-LadyParticipantThe B vitamins are water soluble so there is no harm in taking extra. I take a b-complex at a certain time and a sublingual one in the morning or at bedtime. Depends on how my day is going.
ShondaSeptember 11, 2013 at 11:00 pm in reply to: Newbie looking for advice about symptoms and appointments #4326Lab-Scientist-LadyParticipantJen,
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. ๐
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.
ShondaLab-Scientist-LadyParticipantThanks for the response. I am afraid there is just nothing good for us to use. Thankfully I don’t have side effects to narcotics like some people. It is the only thing I have to take the edge off the pain. I pray it stays that way. I saw my PCP yesterday and she told me to be careful that with my tissue fragility injections, surgeries, implanted devices should be reserved for last.
ShondaLab-Scientist-LadyParticipantInteresting that they lock the Parkinson and Alzheimer’s results. That is what most people want to know. Plus I thought Parkinson’s was not a disease with a clear inheritance pattern. Do you think it was worth the time and money?
Thanks,
ShondaSeptember 6, 2013 at 3:52 pm in reply to: Has anyone tried LDN and became a tighter or more together EDSr? #4300Lab-Scientist-LadyParticipantThanks
Lab-Scientist-LadyParticipantWe still have family in Longmont and friends in both Denver and Boulder , but are unable to travel anymore with all my health problems. When I was a kid it was my dream to move back to Colorado and have a horse ranch. Oh how things change. 8-/
September 6, 2013 at 3:23 pm 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? #4298Lab-Scientist-LadyParticipantHi Jamie,
Do you have your raw daMN data on disk? That is very important to get. Sorry I don’t have any answers to your questions but, I thought it would be important for you to know to get your hard copy of the MRI. I have a lot of funky veins and arteries and so does my family. Both internal and externally. It hard to know what is because of EDS and what is not.
ShondaLab-Scientist-LadyParticipantThanks. I am sorry it taking you so long. Your story is similar to what I have been reading. ๐ . As if EDS is not enough to deal with.:-S
Lab-Scientist-LadyParticipantHi
I can’t be sure but I don’t think I hyperextend my joints. I do think my skin is stretchy. I don’t have abnormal scarring. Would a genetist give me a more definite answer?
I’m starting to believe my BF has EDS :/ He was operated at 15 for scoliosis. He has hyperflexibility. He has had more than one dislocation. His joints pop often and loudly especially his jaw! He suffers from dry eyes and his skin is stretchy. He also suffers from low stamina/fatigue and low stress tolerance. He gets very anxious and panicky and very tired if under stress. He also manifests the classical ADHD predominantly inattentive type symptoms. He is not really ill like me but gets very tired easily. He often has insomnia and occasionally he has unjustified diarrhea.
A geneticist is the best doctor to see for the diagnosis of EDS and other connective tissue diseases. It may take a awhile to get into one, but when you do give them a complete medical history. Include every thing no matter how small or unrelated they may seem. Do this with your family members as well.
It does sound like your friend has it too. Sometimes men suffer less from EDS than women. This is true in my family. The women are greater affected by EDS than the men. I hope this will be true for my son, even though he is showing the same symptoms I was at his age. -
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