Diabetic T1 & MS

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Diabetic T1 & MS

Postby Tiramisu » Sun May 28, 2006 2:18 pm

Hello,
I am a 31 yr old single mom and I have just been Diagnosed with MS. I have had Diabetes for 23 years. I am in search of all the available support and information on MS. I know a lot on Diabetes, but nothing on MS. Glad I found this site!
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welcome welcome!

Postby jimmylegs » Sun May 28, 2006 2:28 pm

hi there tira, YOU HAVE FOUND THE RIGHT PLACE! there are all kinds of vested interests in bloody well getting better here.

u poor thing. i'm 35 and just got the bad news in january, no kids though.

for an inspiring read about a single mom with two daughters and ms, look up black patent shoes - dancing with ms by eva marsh. she's not at all about vitamins like me, and she eats french fries thoughout the whole book (!) but her drive is wonderful. her story is of a much tougher battle with stigma than i think we have to suffer now. thank goodness.

there are some strong links between diabetes and ms in the research i've been reading. do you get into reading journal articles much?

ttfn!
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Postby Arron » Tue May 30, 2006 12:32 am

hi tiramisu-- delicious name :) welcome to the community!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Im here

Postby Tiramisu » Fri Jun 02, 2006 12:48 pm

Hey everyone..
I have been away and not communicating w/ this wonderful group> I am going thru MAJOR denial due to reading up on copies of my results and finding a lot of negative result son my Spine tap. I have received Avonex and know no one with MS and I am VERY scared to start this. I know I have to. What I was told at the time of Dx was "relatively benign" at a very early stage.
i AM ALSO SCARED OF THE SIDE EFFECTS OF AvONEX, being Diabetic really does not help. Diabetes used to worry me incredibly, and now it seems so simple. I only worry constintly about death and not walking, due to MS. I need all your help and advise, please

Also seeing the story of Jaques Du Pre, didnt make feel too shiny :cry:
Mars
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Postby Arron » Fri Jun 02, 2006 1:59 pm

Hi Tiramisu, it's normal to feel this way right now... I suggest you turn to the Avonex forum for specific help on that therapy. You have lots of options available to you.

my best,
-arron
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby bromley » Fri Jun 02, 2006 2:01 pm

Tiramisu

Look on the plus side - you live in Florida. Lots of free Vit D.

I don't know much about diabetes, but read that stem cell treatments are likely by the end of the decade.

On the MS front - the genes should be identified soon, which in turn should lead to better treatments. Much work is going on into protecting nerves which should prevent disability. Also work on repair of damage done. I bet you $1 that by 2010 this will be a manageable disease - like Type 2 Diabetes is now.

I often think of the Jacqueline du Pres and the Richard Pryors who suffered so dreadfully from this disease. But they were dx 25-30 years ago before any treatment was available. A number of much better treatments are in the pipeline to keep us going until they can shut this disease down for good.

Get out in the sun tomorrow.

Ian
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pep talk for tiramisu!

Postby jimmylegs » Fri Jun 02, 2006 2:21 pm

hi there, i'm pretty new at this too but here goes :)

being newly diagnosed is certainly a freaking scary time. i remember feeling suddenly so insecure, like somebody had cut invisible strings that held me together. as i got worse, i kept saying 'well, at least i can still (insert function here)" and then by the next day, that would be gone too. i wanted comfort from my parents but they were just as scared, and i wanted to monopolize my neurologist. once i was off the couch and back on the computer, the fear receded as i learned and started planning.

i arranged appointments with a naturopath (who has MS and was recommended to me by my family doctor and others) and dietitian through my school coverage and services (i'm a university student); i got a referral to a physiotherapist from my family doctor, i had the peripheral neurologist and the MS clinic doctor and staff, and i arranged appointments with a counsellor through my work's employee assistance plan. and i called the local chapter of the MS society. it has been GREAT to get all the different viewpoints.

but even with all these professionals advising me (and contradicting each other sometimes, of course), i find the greatest comfort from gaining my own level of understanding of past and current research, by reading medical journal articles (which also contradict each other of course). i'm lucky to have access to the full text of many because i'm a student. but even just the abstracts are great to read. you start to understand the language after a while (and a LOT of wikipedia time). so all i can say, tira, is READ READ READ! educate yourself and find the path that is right for you. scholar.google.com is a great search engine for peer reviewed literature. since you already know about diabetes, you probably have a headstart!

you have found a great community here and everyone is looking for answers too. there are lots of great ideas here and in the medical world - just don't get caught up in one right away. read everything! take your time!

the main thing is to find your own way to fight. eva marsh did that in her book. her way is very different from mine, but that's great! diversity and all that :) don't despair. i'll tell you one thing, i might still be in denial about my spinal tap results too, but i don't think having stupid oligoclonal bands is a death sentence. i'm going to get healthy and they're going to go away, dammit! i was scared of the drugs too, and decided against medical advice to defer starting them. but i am NOT doing nothing.

i think the best thing going for you is **relatively benign, very early stage**. even though my attack was kind of a kicker, i am SO GLAD it happened because i really needed this wakeup call with respect to taking care of myself.

anyway, tira, fear is for the unknown, so the quicker you know your battle, the sooner you will be empowered to fight!
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Postby Tiramisu » Fri Jun 02, 2006 8:04 pm

Wow.. Thank u so much for all the wonderful advise.. I really need this and some more. Its so funny how I used to worry so much about Diabetes and the complications, now its practically nothing to me. I just wonder when will my legs give out, or when will I sit in a wheel chair, these thoughts haunt me real bad.

I have a few questions that I would love to know with all of you...
Are there meds for mental alertness ?
what would be the AVERAGE time of "wheel chair" time (years from dx)
Mars
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fixate on health!

Postby jimmylegs » Sat Jun 03, 2006 6:29 am

tiramisu the most frustrating thing about this thing is that it is different for everyone. but that's also the best thing. it leaves you wiggle room. you could say, on average, x percent of people will end up in a wheelchair. or you could say, i'm bloody well going to be one of the percent that don't! or at least, i will put it off for 50 years. aim high!

i take ginkgo biloba for my brain. i really notice a difference if i don't take it for a while. i lose my train of thought far more easily without it.

benign and early stage means you have the best chance (other than pre-dx prevention) of stopping this in its tracks. but you have to take action. look it all in the face and scream: BRING! IT! ON! and then get to work! :D power to you!
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