hi. I'm new

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hi. I'm new

Postby TwinsMom » Thu Aug 31, 2006 7:33 pm

Hi. newly diagnosed today. Not sure how to feel. Part of me just wants to get on with treatment and get rid of the tiredness and pain. Another part is afraid of the future. I have twin 8 year old daughters, a wonderful husband with a brand new business and a demanding career at one of Fortune's top companies.

During the diagnosis (which all started with Lhermitte's Sign that I mentioned to my doctor in May), I had several "aha" moments: numbness, forgetfulness, muscle spasms, fatigue, moments when my arms were so weak I thought they would fall off. I had a C-spine MRI and a brain MRI--nothing shows on the brain one...but the C-spine has lesions all over the place. I had a lumbar puncture and ruled out things like Lymes. The lumbar puncture sucked. I had the headache for 4 days, then finally a blood patch.
I will start Solumednol IV treatments on Tuesday next week for 5 days, then prednisone for the next 9 (tapering off of the steriods). After that, I need to decide what long term treatment I want to go with of the ABCR. My doc gave me an excuse to take the week off while on the Solumednol. Said it would be best if I don't work and get stressed.
So...any advice out there? Anyone do the Solumednol IV treatments? Which of the ABCR's is the best?

Thanks!
Twinsmom
8O
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welcome

Postby jimmylegs » Thu Aug 31, 2006 8:52 pm

eek early days, did you ever find the site fast.

you sound way more calm than i was... i had the LP headache too. after days of pain and trying to function, in the end when they said blood patch, i said no thanks! and stayed lying down for 3 days. it healed up - PHEW! but i had ppl to look after me, not ppl to look after.

sorry i can't advise on the choice of drugs - i am in the alternative camp. there are lots and lots of people here that can tell you about their experiences with the drugs though. if you don't get enough replies here, maybe post your question in the forums for each of the meds you are curious about? from what i gather, "best" is a really personal thing with the ms meds. anyway there are lots of folks here to help.

welcome!
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Postby Highway » Sat Sep 02, 2006 8:27 am

Welcome TwnsMom,

I myself am also new to this site. Come November this year it will be 2 years for me knowing of this lovely disease. I credit you to have gone through THE TREATMENT, I opped out of going through it. But then again I is a MAN, ~lol~

I decided to go with The BIG C for a daily shot, less side effects and being a former piercer I decided to allow my former customers to laugh at me daily having to stick myself, ~smiles~.

Whatever you decide I myself and I am sure of others will be by your side, or in back of you or maybe even in front of you, especially if there is a good movie showing.

Big Lee signing off, for now.
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Postby Arron » Sat Sep 02, 2006 9:17 am

hi twinsmom, 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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Postby REDHAIRANDTEMPER » Tue Sep 05, 2006 8:54 am

welcome to the group there twinmom.....hope you find the right treatment for you..am sure someone here iwll give you great insite for that stuff..i am still waiting for them to tell me that i defently have ms..they are 99 percent sure but cant seem to commit to the diagnostis just yet..soon i hope they will tell me for sure....

chris
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Postby gibbledygook » Tue Sep 05, 2006 11:39 am

Hi!

I too have few brain lesions but a "large" lesion in the cervical spinal cord. I also had symptoms just like yours at the start although I also had swallowing difficulties, then dead arm, then numb right hand, then l'hermitte, then mild right foot malcoordination, then major whole right leg malcoordination, then nasty left foot burn, then night spasms, then optical problems. This all occurred within 3 years. I started beta interferon 1a after the major leg malcoordination (2 years in) and I have to say it did nada to stop the foot burn, or night spasms or optical problems so I would recommend either copaxone or the strongest interferons. Also steroids to start with would probably definitely be helpful.
There's also loads of alternative treatments on this site which are worth a look including low dose naltrexone, statins, diets, vitamins and antibiotics.
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