Lesley1020

Was back at the neurologist and he showed me my brain scan and spinal MRIs. I have 9 lesions (scars) on my brain, and 8 on my spine, which means I have had 17 "attacks" and only known of 2 of them and have obviously had it for a long time. The long term prognosis to the best they can tell is I have a 40% chance of being immobile within 10-15 years - but of course a 60% chance of not being .

The guy has been great - he knows my insurance situation and seems to want to help - his nurse phoned me within an hour of me leaving and has an Avonex counsellor coming to my apt on Tuesday and they are working with my bosses to clarify income etc. It's looking like the manufacturer will give me it for a year, if I can get the payment together for the first month as a one off fee - which will be about $1,500. Everyone's kindness has totally amazed me. Maryann and Heather in work have told me they will give me 250 each and I was like no way etc, but they both said we want to help, please let us basically. Ron & Cathy have cut my hours to 40 a week and are looking at my wages - they really want me to stay. If Avonex say no - and it would only be because I am not a US citizen - which I understand, they have to take care of their own first - there are other avenues. My boss' close friend has it and is very well off and went to a world renowned place for MS research apparently, well 2 actually, the Mayo Clinic for MS in Minnesota and the Vanderbilt University Hospital in Nashville. I am getting copies of my MRIs and stuff and we are going to see this professor guy on August 23rd - he conducts research studies and there is a possibility he can get me on one starting this year, retrialing a drug that is so far halting it totally at the stage it is at now, but they are looking at bout 5 yeras till the FDA approve it, and that's only here for now. But I would get it free - and there is no placebo - and this guy is going to see me for free in Nashville! Its all ifs and buts of course, but I've decided I'm not going home until I have exhausted every avenue - if there is anything I can do to slow this thing I am doing it. The only bad news is the fact that I have so many lesions - and none of them are active at the moment - meaning that I am not currently having an attack and therefore the numbness, tingling etc is going to be there for good, its just a by product of the last episode basically and the build up of all this shit in my brain and spine lol. But I will just have to learn to live with that. The guy at the gym in my apt is devising something for me and I am trying to go swimming with Jen a couple of nights a week. It's just so damn hot right now that you dont want to go outside at all even at night.

Avonex are also sending a counsellor out to talk to me about things and what to expect etc and someone is going to come if I am approved to show me how to inject myself and what side effects to expect etc. The nurse said to me today, you need to start living for now, and appreciate everything, which I suppose we should all do anyway

Anyway I am rambling so I'll shut up now - I just wanted to share somewhat positive news for a change. My boss is continuing to work with the insurance company to not much success but I am coming to an arrangement meantime with the hospital to pay $100 per month.

It all still seems kind of surreal but it has really been a relief too to finally know what it is, I can face pretty much whatever comes, the one thing that saddens me is that I suppose I have to acknowledge I probabl y wont have kids now, it would be a lot of put on any child (not to mention you need a man first hee hee) and with these drugs you cant get pregnant while you are on them etc.

Anyways, once again I have really been overwhelmed at how amazing pretty much total strangers have all been. When I got to work from the hospital today I was a bit upset and Cathy just put her arms around me and hugged me and said we'll do whatever it takes to help you :-) Just amazing.

Oh, and the Elvis weirdness has started already and its not even August yet, people are arriving in their droves LOL - I saw 6 lookalikes today alone - 4 of them being in Walmart

Silverdragon102

Hi Lesley

Well atleast you have had some good news and I hope it continues for you. It is always amazing when people come out of the woodwork to help someone else especially someone they don't know for long or at all. I will keep my fingers crossed.

Anna

ElsieTheMaid

Leslie, what a year you have had!!! I hope that everything continues to go well. Keep us updated.

AmerLisa

Fantastic!!!

I haven't followed your story (I'm not always on here) but it seems things have been a bit hard for you - I know, probably to say the least. Its so nice to hear that you've got people standing along side of you, willing to help. I bet that's better than any medicine at these times. The best of luck and wishes!

Lisa

Taffyles

Good news and great that people are rallying round, BUT Lesley, $100 a month to pay off your medical bills! They must be jumping for joy....tell them you can't afford any more than $25 a month- they'll take it. I kid you not, I've worked with people who are paying off $30,000 + bills at $5 a month.

LadyTyger

It seems to me that you are meant to be there Lesley. Look at all the caring and sharing people that you have all around you. It awesome to read and hear when you share of your experiences whether good or bad.

Keep your chin up and keep smiling!

God bless.

Vanessa