- This topic has 40 replies, 19 voices, and was last updated 10 years, 9 months ago by
.
-
Posts
-
This is an often asked question. It is VERY helpful to have an official diagnosis. It gives you a name for all the weird things that your body does that doctors can’t explain. EDS affects the body in SO many ways because SO MUCH of the body is collagen based.
Once officially diagnosed you also know you belong to the herd (of zebras) now and there is power in numbers. There are people who understand what you are going though, the headaches DocTards cause for us, and the daily grind to just keep going.
Knowledge is power. Knowing you have an EDS diagnosis on paper from a qualified M.D. is HUGE. There are still lots of a-hole doctors and nurses, etc but they can’t deny that you have a connective tissue disorder. That is a big deal and it affects so much of your life, your body, AND how medical professionals should treat you. Everything from closing a wound (stitches vs. steri strips), to why your body doesn’t react as expected to pain meds or anesthesia, and the fact that there is an underlying condition and it is not hypochondria.
Your body is mostly collagen. It is important for our medical professionals to know ours is defective and to treat us accordingly. There are lots more reasons too, but those are some of the big ones.
The thing that changed once I was officially diagnosed too was that I now knew what to call this thing I battle every minute of every day. It validated me and gave me a community to belong to. For me, the validation was a biggie.
Anyway, hope that helped in some way.
I totally agree getting a DX is vital. My question is being that I was DX’ed by my neuro, not by a genetic specialist,is there any additional benefit of getting a DX from a geneticist?
Though it seems it doesn’t even matter a lot of the time in the medical community if you do have an EDS DX because most doc’s have no idea what it means. I saw my GI doc this week and asked him if my EDS couldn’t be a part of the gastro problems I am having. To which he said that EDS ONLY effects joints, making them hypermobile. Period. I was stunned. This guy is older, near retirement age, so in all his decades of practice he has never learned about EDS and/or never had an EDS patient before me? Really? Wow. I know I need to find a new GI doc now, need one who knows about EDS, but how does one go about that? It can get so discouraging.
Wow…. what outdated thinking. So many of us have IBS, gastoparesis, etc that stomach issues are a very common result of EDS. EDS affects collagen, not just joints. That is why EDS affects the whole body.
As for finding a new doc, call and ask new offices if the dr is familiar with EDS and how if affects gastro issues. They might have to ask the dr and call you back.
There was a gastro dr, can’t remember who, who started using the Beighton criteria on his IBS patients, and found a HUGE percentage of them scored highly and had EDS when further screened.
I also have ever multiplying spider veins on my face (and nope I am not a drinker ; )) and legs,
sometimes small blood vessels in my fingers and toes do, I think, just burst- without any reason (no knocks or whatever)- it feels like someone suddenly stabs a needle in my finger/toe and wildly wriggles/stabs it around and then I’m left with a deep and “bloddy under the skin’ bruise that takes ages to go away
( and of course I frequently ‘normally'(meaning without the ‘needle stabbing’ feeling, actually dont feel it at all, bruise ‘without any reason’), my veins are v visible (though I think that’s in part due to my v thin skin)-xxg
Wow bearcat, you’re the first person I’ve come across who also has the strange small blood vessel ruptures in the fingers. I went to my family doc with it and he was stumped, but didn’t seem to think too much of it. I wondered if it was connected to the EDS. My diagnosis is classical with possible vascular, but my insurance wouldn’t pay for the genetic testing so the jury’s still out on that one. I’m sorry you have that crazy symptom, but glad to see that it’s not just me.
All the best to you.
Wow…. what outdated thinking. So many of us have IBS, gastoparesis, etc that stomach issues are a very common result of EDS. EDS affects collagen, not just joints. That is why EDS affects the whole body.
As for finding a new doc, call and ask new offices if the dr is familiar with EDS and how if affects gastro issues. They might have to ask the dr and call you back.
There was a gastro dr, can’t remember who, who started using the Beighton criteria on his IBS patients, and found a HUGE percentage of them scored highly and had EDS when further screened.
Palomino,
Yes, I was thinking the same thing, that I would have to start calling around to see if any
GI doctors on my insurance know about EDS. I also need to find a new pedi for my kids.. our current one has NO CLUE and just wants to send us to a specialist or dismisses my concerns and gets us out the door. But for day to day issues we need a pedi who understands how EDS effects everything! My neuro did a consult appt. with one of my daughters (she can’t treat kids per her insurance) and her recommendation was to find a pediatric internist. So, she tried to find one and couldn’t. Apparently there are not any in our area (which is a pretty good size metro area).The amount of phone calls and energy needed to find doctors is daunting for me right now. Maybe in a few months when the weather is better (I usually do better in the summer, as long as I don’t get overheated – that sends me spiraling). =)
My POTs had got really bad again the other week and I had been noticing on rainy/humid/thunderstormy days it was really bad and wondering if this was due to allergies/increased histamine release? I had 3 really bad days and ended up in Emergency and asked to be tested for mast cell disease. I tried the Darier’s sign test at home as suggested by Dr Diana and on rubbing my skin it came up a really bright red colour and stayed there for around 20 minutes and I actually wrote my name across my chest with my finger (this has now reduced significantly since being on antihistamines). The doctor said he thought it was pointless testing for mast cell disorders when the treatment would be antihistamines anyhow, so he put me on 3 different types- Zantac, Polaramine and Phenergan and I’ve been on antihistamines for 2 weeks now and so much better already! I take the Zantac twice a day and the other ones when I feel I need to (being a bit careful as I’m breastfeeding). I can now go and do the shopping for a couple hours before I need to go lay down as opposed to lasting 30 minutes or less as previously. I am able to do a lot more and don’t feel like my neck is as swollen and it’s much easier to breathe, less fatigue etc.I always found an antihistamine helped when my symptoms got really bad (the doctor put me on them as he thought I was having bad asthma when I first started having problems so always knew they helped, but wasn’t sure why). I would officially like to be tested though so I definitely know this is the problem. I think it possibly is as when I get really bad I get flushing symptoms and my bp can go high (as well as low) and I get the postural tachycardia and are very sensitive to beta-adrenergic medications eg. asthma puffers like Symbicort. I also get random bouts of diarrhoea and recurrent sinusitis,asthma symptoms, neck feels swollen, get breathless, wheeze sometimes all with the POTS symptoms. Does anyone else have similar? Are there other tests you can do for mast cell problems?
I have POTS.
There is no help in my country though.
I love reading Americans posts on POTS treatment as it’s like viewing another species!
You guys are literally decades ahead of everyone else. It was Americans who discovered POTS actually.
(Luckily for us).The problem, of course, is treatment and finding a specialist.
I really hope you guys can get some help and improve your lives.
All the best.It was by being diagnosed with ‘Features of POTS’ way back in 2004, by Professor Christopher Mathias, at the Autonomic Referral Unit, St Mary’s Hospital, London W2 1NY, that set me down this long path of discovery, in the first place.
The EDS diagnosis came some 6 years later with Professor Grahame. Thank heaven for these people for without them we’d be lost. Let’s hope you get them on board Dr Diana, then maybe we can get some really affective treatment in this country!!!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!My daughter is going for a tilt-table test to confirm whether or not she has POTS. This is all very new to me and I really don’t know where to start. She is 19 and has always been very active and athletic. But from what I have been reading it seems as if POTS is usually not the only diagnosis. Does it seem to go hand-n-hand with something else?? I am really confused. Can POTS just happen or has something caused it?
Hi I have pots. I was told it is because I have EDS. I am reading with interest (but not quite understanding) about mast cell issues. For the past 10 years I have been having all sorts of strange rashes inc hives. I have what I think is liver spots on my chest and neck area. I also had one on my face which flared up and grew real big and was itchy. The doc didn’t have a clue what it was so he said it may be a solar keratosis (looked like small sarcoidosis to me). It swelled up for 3 weeks but has gone now and I am just left with the liver spot. I get hives for no reason and they are intensly itchy. I have small red blood spots over my legs and these are also in my mouth inside my lip and on my gums. I come up in strange circular red rashes too. I sometimes react in sun, tachy and headache, but put this down to pots. My kidneys are now not functioning how they should and I am being tested for thoracic outlet syndrome due to numbness, hyperaccusis, pain and vertigo amongst other things (I hope it is TOS).There must be something else going on than just EDS and Pots.
Dr. Clair Francomano.. I have heard that name before. I may have to see what I can do about an appointment with her. The Rheumy I saw a few weeks ago said I did not have the Vascular type, but I don’t know how much…If anything…he knowsd about EDS.
- You must be logged in to reply to this topic.