Ehlers-Danlos Syndrome, Hypermobility Type

[Guest guest]

Hello I was wondering if anyone in the group has been tested for this Ehlers

Danlos Syndrome also known as EDS and there are different types. As some of you

know I had a stroke last year at 42 and it cause head pain so I have been seeing

a pain neuro at Stanford

My sister who is 29 has fibro very bad and I have been telling her about the

diet but she really does not do it...anyway I kept telling her about my pain

doctor. She finally saw the pain doctor and recommended another neuro who thinks

that she has EDS, also my mom, my moms sister and my aunts daughter and perhaps

me as well.

My sister has to go see a genetic doctor next. I do know we all have hyper

mobility and I know some of you do as well. I do cut easily

http://www.ncbi.nlm.nih.gov/books/NBK1279/

Ciao-

Ange

________________________________

To: fibromyalgiacured

Sent: Thu, July 26, 2012 6:48:45 AM

Subject: Re: kidney stone problem and help/Mirela

hello all,

Thank you kindly for all of your replies. I feel a bit more relaxed now because

we got in contact with an excelent urologist from Romania Dr. Mirciulescu

andru and he assured us that this procedure is good for my grandfather and

also painless. He said he has done over 5000 such procedures and all his

pacients were happy with the results. He even treated pacients from UK, because

the clinic is open to medical tourism and the price is 150 euro per procedure.

For now he recomended we do 3 such procedures and monitor the results. I am

confident we will be fine but I will keep you posted. Would you say the price is

ok, if anyonne can help with that as well.

Thank you againg and keep your fingers crossed.

We are scheduled for the 8th of august.

Best wishes,

M

>

> Mirela

> Â

> I really do not know much about kidney stones, nor the treatment you have

>mentioned here. I do know that with the ketogenic diet there is a risk for

>kidney stones nd on the classic ketogenic diet that they use for epilepsy all

>the children on it take a supplement of potassium citrate. This has been proven

>to stop kidney stones forming. However, because of potential interactions with

>meds and also the chances of mineral imbalance I would recommend speaking to a

>doctor about this

> Â

> http://www.livestrong.com/article/517844-potassium-citrate-for-kidney-disease/

> Â

> Myself, I am on a ketogenic diet and I am aware of the risk of kidney stones

>but I am not concerned about it. I have never heard of one single person on the

>ketogenic diet I am on developing kidney stones because of it. Somebody may

have

>but I have not heard of anybody

> Â

> I do not fully understand why the diet I am on is so much better than the

>classic ketogenic diet, which is known to induce kidney stones, but I am

>thinking it is because we only eat the good foods that Bee recommends and it

may

>well be the supplements we use. I know that the sea salt we use contains

>potassium and I am thinking it might be this. None of us take potassium as a

>supplement, so i am thinking we are recieving enough potassium, just using the

>sea salt. The sea salt really is the safest way to get all our minerals

> Â

> Bee would be able to give you a better explanation than I am giving here

> Â

> Love Joanne

>

>

> ________________________________

>

> To: fibromyalgiacured

> Sent: Tuesday, 24 July 2012, 14:07

> Subject: kidney stone problem and help

>

>

>

> Â

>

> Hello all,

>

> My grandfather was diagnosed with kidney stones and he is one step away from

>surgery. I am worried that at his age this might not be such a great ideea.

>Someone told me about lithotripsy, a procedure that is non invasive and uses

>ultrasound to brake the stones. Can anyone help me with more info regarding

this

>procedure?

>

> Thank you all

>

>

>

>

>