Xenon research study

Hello all--

I've been accepted into the Xenon study but haven't yet received the kit.

Haven't been keeping in touch but here's an update. My symptoms are still confined to my feet, flares of burning, prickling, pain, super-tenderness. Definitely related to how long I have been on my feet, although, weirdly, the pain etc don't kick in until I have been sitting a while.

But last year I was diagnosed with peripheral neuropathy (non-diabetic) so I have the odd combo of surface numbness and internal pain. Ain't it fun?

The neuropathy is not advancing fast. It seems to have the effect of reducing the burning sensation. My feet still get bright red, but don't feel as hot. I guess we take what we can get.

These days I find that massage with a light lotion is the best thing for relieving the discomfort. Also noticing that blood circulation is a factor--I get prickling and pain if I am in a chair that cuts into my thighs.

My problems are so small compared to some of you that I can't complain.

At least these days we aren't considered "nuts" because of our weird symptoms.

Hi Penguin,

Glad to hear that you have been accepted into the Xenon study. I filled out the on line questionnaire at the end of April but haven't heard anything yet. Do you recall how long it took for them to tell you that you were accepted into the study? I hope that things go well with you!

Thanks, Dragonfly

Dear Penguin.

First of all - thrilled you have been accepted onto Xenon study.

Secondly - your 'problems' are the same as everyone elses. EM is a wicked intolerable syndrome. Im so sorry that you have it.

Also to Dragonfly-

They are running behind so on average 4 weeks. If you havent heard yet please contact Ying Man ■■■■■■■■■■■■■■■■■■■■■. She is project manager and coordinating everything.

God bless


Dragonfly--I applied on-line 4-28 and received email with the forms on 5-2. On 5-19 scanned and emailed to Ying, received confirmation. Mads, I'm not surprised they're behind, bet they got a bunch of responses when they reached out to LWE community!

Glad to be a part of the study, hoping this research will result in better understanding. My mom had the same feet symptoms, so I think there could be a genetic link. After all, I got her arthritis, droopy eyelid, and tendency to carry extra weight in front of me!

Like I said, my condition is mild--some of you are living with fierce pain and you keep on in spite of it. Strong spirits all of you. Warm wishes--Penguin

Thanks Penguin,

I got the email today with the forms. Our weather has turned cool so I am better the past few days wearing my sandals etc. I have also been able to locate a rheumatologist who is willing to see me to get things started.He may refer me on but at least it is a start. I am very thankful for all the blessings that come my way. Here's hoping the same for everyone else.

I received the saliva sample kit and sent it back today. Just a note: if you live outside of Canada, you will receive a USPS customs form to fill out. The instructions aren't real clear. You need to fill in your name and address and take both the first and second pages of the form together to the Post Office--they'll process them.