So glad to hear you are back home Bluesky!
I know what you mean about dr's. I hate it when they turn up at your bedside with a huge entourage of juniors with notepads.
It makes you feel like a fish in a goldfish bowl:(
A request
-
prairiegirl
- Family Elder
- Posts: 228
- Joined: Fri Feb 05, 2010 3:00 pm
Hang in, BlueSky,
I think it's very strong and healthy of you to "brace yourself" for mainstream medicine -- it can be so frustrating.
When you are on top of it again, please connect with me if you can. I am working on some studies, and have some new thoughts about the MS/EDS situation that may be of some help.
I am an eye doc with EDS, and was developing MS (and both of our kids have EDS, one disabled with autonomic dysfunction. Heck, one of our DOGS even has EDS!). (And I have nothing to sell. Don't you hate that?).
Hang in, and I know everyone here is pulling for you!
(((((hug))))))
DrDiana
I think it's very strong and healthy of you to "brace yourself" for mainstream medicine -- it can be so frustrating.
When you are on top of it again, please connect with me if you can. I am working on some studies, and have some new thoughts about the MS/EDS situation that may be of some help.
I am an eye doc with EDS, and was developing MS (and both of our kids have EDS, one disabled with autonomic dysfunction. Heck, one of our DOGS even has EDS!). (And I have nothing to sell. Don't you hate that?).
Hang in, and I know everyone here is pulling for you!
(((((hug))))))
DrDiana
Dr. Diana
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
request
Yes! Whew, I was beginning to worry too not having heard from you on the thread and am so relieved you are home. Get your rest! Don't worry about thanking us, just knowing you are home and that you might be feeling a bit stronger is thanx enough!
-
Brightspot
- Family Elder
- Posts: 207
- Joined: Fri Jan 15, 2010 3:00 pm
- Location: Vancouver, Canada
Hello again my wonderful friends -- I don't feel so hot today, but still much happier to be in my own house. It's raining and lovely outside. 
A sideways note to Dr. Diana (nice eyes) -- I have three children who all have various degrees of eds stuff which of course runs in my family -- one is officially diagnosed (he's the one who loves to freak out his friends by bending his hand backwards) and they all scare me by having issues that remind me far too much of me. I don't like to put my children's issues in a public forum but my NY neuro was just giving me advice about pediatric neurology and who to go to for family issues. My son's geneticist said that since it's inherited dominant I must have some issues as well (I score6/9 beighton) plus a lot of soft signs (the tongue-nose thing, high arched palate, the wrist thing, blood vessel issues, flat cornea, WPW, etc). My father has had four aneurysms and I worry for my children.
I met with an international expert on veins about CCSVI and EDS before considering the procedure because I was very worried, and he explained in great detail why he believed it would be safe. But I think everyone is still learning, and the whole defective collagen connection makes a big difference. Has anyone studied specifically the effects of angioplasty and venoplasty in an EDS population? This doctor is a true expert and was confident, and genuinely had experience, but I don't know if his info was based on thousands of people, or if there could be a possibility of a new form of EDS (remember they just recently identified the tenascin deficiency?).
OK, sideways note over.
I know it's raining here, but I hope that there is sunshine for all of you out there. You have made my heart warm and happy and that feels great inside!
A sideways note to Dr. Diana (nice eyes) -- I have three children who all have various degrees of eds stuff which of course runs in my family -- one is officially diagnosed (he's the one who loves to freak out his friends by bending his hand backwards) and they all scare me by having issues that remind me far too much of me. I don't like to put my children's issues in a public forum but my NY neuro was just giving me advice about pediatric neurology and who to go to for family issues. My son's geneticist said that since it's inherited dominant I must have some issues as well (I score6/9 beighton) plus a lot of soft signs (the tongue-nose thing, high arched palate, the wrist thing, blood vessel issues, flat cornea, WPW, etc). My father has had four aneurysms and I worry for my children.
I met with an international expert on veins about CCSVI and EDS before considering the procedure because I was very worried, and he explained in great detail why he believed it would be safe. But I think everyone is still learning, and the whole defective collagen connection makes a big difference. Has anyone studied specifically the effects of angioplasty and venoplasty in an EDS population? This doctor is a true expert and was confident, and genuinely had experience, but I don't know if his info was based on thousands of people, or if there could be a possibility of a new form of EDS (remember they just recently identified the tenascin deficiency?).
OK, sideways note over.
I know it's raining here, but I hope that there is sunshine for all of you out there. You have made my heart warm and happy and that feels great inside!
Hi bluesky,
I'm sorry about the rough day you are having.
You remind me of my wife when you write that it is raining outside and that is lovely - she prefers rainy days, but I abhor them.
The one thing I always remember is that it is sunny above the clouds. There is always blue sky. Even at night, it is sunny somewhere.
I'm sorry about the rough day you are having.
You remind me of my wife when you write that it is raining outside and that is lovely - she prefers rainy days, but I abhor them.
The one thing I always remember is that it is sunny above the clouds. There is always blue sky. Even at night, it is sunny somewhere.
My name is not really Johnson. MSed up since 1993
Hello Everyone!
Hi BlueSky (and thank you for the sweet compliment).
You have done so much better than I have at finding experts to advise you about whether or not your vessels are strong enough for angioplasty.
My IR said that having EDS would preclude me from having the procedure, until I explained to him that unless they were screening people for EDS, he'd likely already performed many procedures on EDS patients. I also explained that we were tested for both Loeys-Dietz and the Vascular form. All clear. (I didn't mention that my mom lost 2 sibs under the age of 3 from vascular events, however. I thought that might freak him out. ha).
Dr. Hubbard wasn't aware of the procedure being done on any EDS patients, Dr. Hal Dietz (<3 him) wasn't able to give us any advice, and I haven't heard back from Dr. Sclafani, although I know he is interested in the EDS connection.
I truly believe that MANY patients with MS have EDS and are not diagnosed, so I decided to take my chances. I did it for the kids, and for science, and so far, so good.
I agree that it sounds like you have EDS (not just from the autosomal dominant characteristic of the gene, but from your symptoms/signs as well). And when you see enough of us (especially the classic type), you end up FINDING things on your body that you didn't realize were EDS related.
One or 2 of my videos coming out will show some of the things to look for EDS of all kinds.
Don't you love being a pioneer? (well, actually....)
Enjoy the lovely rain,
Hi BlueSky (and thank you for the sweet compliment).
You have done so much better than I have at finding experts to advise you about whether or not your vessels are strong enough for angioplasty.
My IR said that having EDS would preclude me from having the procedure, until I explained to him that unless they were screening people for EDS, he'd likely already performed many procedures on EDS patients. I also explained that we were tested for both Loeys-Dietz and the Vascular form. All clear. (I didn't mention that my mom lost 2 sibs under the age of 3 from vascular events, however. I thought that might freak him out. ha).
Dr. Hubbard wasn't aware of the procedure being done on any EDS patients, Dr. Hal Dietz (<3 him) wasn't able to give us any advice, and I haven't heard back from Dr. Sclafani, although I know he is interested in the EDS connection.
I truly believe that MANY patients with MS have EDS and are not diagnosed, so I decided to take my chances. I did it for the kids, and for science, and so far, so good.
I agree that it sounds like you have EDS (not just from the autosomal dominant characteristic of the gene, but from your symptoms/signs as well). And when you see enough of us (especially the classic type), you end up FINDING things on your body that you didn't realize were EDS related.
One or 2 of my videos coming out will show some of the things to look for EDS of all kinds.
Don't you love being a pioneer? (well, actually....)
Enjoy the lovely rain,
Dr. Diana
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea