Newly Diagnosed

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Newly Diagnosed

Postby TonyJ80 » Thu Mar 11, 2010 4:39 am

Hello all.

My name is Tony and I'm a 29yr old male living in the Midlands in the UK. I was diagnosed with RR MS in June last year (the day before my birthday!) and I've recently stumbled across this site so thought I would join. I hope to find plenty of useful info on here.

The first symptom of MS I experienced was Optic Neuritis, which I still suffer from now, more than 12 months later. That and short-term memory / Cognitive issues are the only major problems I have thus far. I have had balance and stability issues but these have gone now to leave me in fairly good condition, apart from the vision and memory.

Just wanted to post to say hello and I look forward to finding out as much as I can about the condition and sharing my experience with others.

Bye for now,

Tony.
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Me too

Postby Hockeydad » Thu Mar 11, 2010 8:10 pm

I too am newly diagnosed. RR. I'm a 46 yr old male. Fairly normal symptoms; fuzzy feet, left hand tingles, get tired at days end. Been told to go on Avonex or Copaxone. I don't like what I'm reading about the side effects for Avonex, but I travel a lot and will find daily injections with Copaxone cumbersome. Help!!
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Postby Bubba » Thu Mar 11, 2010 8:37 pm

HockeyDad: Be careful about putting alot of weight into what you read about the side effects. Remember, they are "possible" side effects. Personally I have been injecting Rebif for almost a year now without any side effects. Prior to injecting, I was horrified and convinced of the negative side effects, and as it turns out, for nothing.

Tony: Hello and Welcome. I believe you will find all the info you want right here...
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
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Postby LadyDoe » Tue Mar 16, 2010 7:52 am

I chose copaxone first off and i havent looked back. its been nearly 3 months and it doesnt seem to bother me anymore. I inject in the evening - right before bed. that way i dont forget to take it - think of it like implementation intention - and i sleep any mingling pain off. Although MS society did tell me to take it at the same time daily - i dont, but its still working - random spurts of numbnes have subsided.

My neurologist pushed interferons - avonex, rebif etc he assumed i did not do my research :P well.. surprise! i did. and i had to tell HIM that i am prone to depression therefore they are not suitable for me.. something about flaring up and amplifying depression.

Then the topic of liver and cardiac damage emerged.. ive read a lot of journal articles that have concluded that interferons may cause or exacerbate liver and cardiac damage when taken in the long term. Apart from MS and endometriosis, i dont want anything else to deal with in this lifetime.

In conclusion, I am extremely happy with copaxone. As long as my trusty icepack or 3 are frozen in the freezer, ready for use, i am happy as larry. It's now become a part of our lives.
... if it's going to be, it's up to me ... :)
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Postby Hockeydad » Tue Mar 16, 2010 7:55 pm

Thanks Bubba. Why did you choose Rebif over Avonex? I've read that the "potential" side effects , see I'm learning :wink: , are the same. Avonex is once a week, Rebif 3 times. Rebif is a much easier injection. Is that it?
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Postby stapes » Fri Mar 19, 2010 9:40 am

hi folks.. i was diagnosed with ms on monday. it started with cramps in my legs that i thought was bad circulation but i got optic neurites about 6 wks ago which is now completly gone i have to have a lumber puncture and go on the injections. im really scared..... do people live a normal life? my professor said i would but im wondering is she just trying ot make me think positive
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Postby gymbuff » Fri Mar 19, 2010 12:24 pm

Hi Stapes,
Sorry to hear of your diagnosis. MS is not good but there are a lot worse illnesses out there. I was diagnosed over 20 years ago and I am still soldiering on. I am not as active as I once was but then we all slow down with age. Maybe MS slows us down a bit faster than normal. Thankfully I never had problems with my eyes but my walking leaves a lot to be desired. I work in an office 5 days a week and do a bit of gardening when weather and energy levels permit. I am a member of a local gym (nothing strenuous)

No medication was available when I was diagnosed, in fact the diagnosis was a bit iffy in the absence of MRI, but I muddled through. I started on betaferon and then onto tysabri. Consider your treatment options carefully and get fully informed on the best one for you. I would suggest that you start some treatment sooner and it may slow the progression even more. The best advice I can give you is to STAY POSITIVE. Don't let MS control you.
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Postby stapes » Sun Mar 21, 2010 4:48 am

hey gymbuff thanks a mil for replying to me. welllll what a week. im so determined not to let this beat me. im doing a degree at night and after four years am sitting my finals next month and im determined to do them. im nervous about the lumbar puncture - not so much the pain but more so if it shows anything up that makes the diagnosis worse. so far i have given up smoking, started a gluten free diet, started yoga. i took a few days off work and went back on fri. it was like i was dieing. i had people crying over me! but it could have been a tumor so i feel lucky in a way. im only 34 so im still shocked that this could have happened to me but i think i will hopeuflly end up healthier in the long run.
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Postby gymbuff » Sun Mar 21, 2010 8:47 am

Hi Stapes, don't worry about the Lumbar Puncture, in fact stop worrying altogether. If you can get your head around the concept of not worrying life becomes a lot easier. it is not easy but it is well worth it in the long run. I've done a lot since my diagnosis and I was slightly younger than you when it was confirmed. I have tried all sorts of diets and read numerous books on the subject of MS and the one thing I, and everybody with MS knows, is that the signs & symptoms and progression rate are different for everybody. Ask all the questions and listen to the answers and you will find a path that works for you.

The best advice I got after my diagnosis was from an uncle of mine who also has MS. He said never stay in bed wondering 'what if' and 'why me' and generally feeling sorry for yourself. The first time makes the second time easier and the slippery slope begins. If you are absolutely knackered and don't feel able to do anything get out of bed and sit in a chair. Do anything but don't stay in bed.

Know your limitations but never stop testing the boundaries. Limits contrain us if we stop pushing. The slippery slope comes into play again - I can't (today) soon becomes I can't and then life becomes limited/restricted.

End of sermon. Hope everything works out for you. Stay in touch if you want another sermon or even a chat without a sermon. MS doesn't own you now and don't let it own you any time soon.
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Postby msgator » Sun Mar 21, 2010 6:15 pm

Hi Hockeydad,
I originally took avonex, but was really sick with flu like symptoms for 24 hours after my shot for the first six months (I took it for three years). Once I had my first child I knnew I could not be sick for 24 hours every week and switched to copaxone, which I have taken ever since, as long as I was not pregnant or nursing. Although you have to do the shot everyday, the autoject makes it really easy (I hated the intramuscular shot you have to do with avonex) and the only side effect is some injection site reaction. Much easier to deal with as a busy mom. Also, you don't have to worry about having your liver enzymes checked if you are not taking interferons.

good luck.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby stapes » Mon Mar 22, 2010 4:01 pm

hey msgater

so copoxone is the one you would recommend?
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Postby msgator » Mon Mar 22, 2010 6:20 pm

Stapes,
I would not feel comfortable "recommending" since everyone's MS experience is so different. But it certainly is what works best for me and my situation. Don't eliminate it as an option, just because it involves shots everyday.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby stapes » Tue Mar 23, 2010 1:39 pm

hi all you are not going to believe this. i rang the hospital today to see if there was any sign of the lumbar puncture appointment and they had lost my file. im so angry. do they not realise how important these things are. sorry i had to rant.
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