Welcome. Sorry that you need to join us but we make the best of it.

I have been on DMD's for almost 20 years and have not been hospitalized or needed steroids in that time so I am sticking w them.

I've been on Avonex, Rebif and half- dose Rebif before switching to Copaxone which is my favorite- no depression, no interferon flu.

My best to you,
ANN

hi and welcome to NT. sorry for your dx (diagnosis).
what were the results of your LP (spinal tap). what were the O-bands?

i would start by doing lots of research on MS and the approved meds.
i've been on Copaxone for 9 yrs and have been stable. i didn't want to take the interferons because of a hx of depression (which can be made worse). so, i decided on the C. i have to take it daily but it becomes routine after a while.

my personal opinion is that meds help to decrease the progression of MS. they won't cure but only lessen. i don't believe that MS goes away but only lurks.
many people don't take meds and many do well without them.

this is a big dx to get and meds are a big choice to make.
can you get a 2nd opinion? see an MS specialist?

start to keep records on yourself. get copies of your test results and your mri's. believe me, it will come in handy down the road.

good luck. let us know how you are.

thanx everyone!!
 

I just want to say that you guys on here are AWESOME! I think I have gotten more helpful info in the last 10min. than in the last 3 mo.!thanks so much for the help and warm wishes.*ust a quick question,the dmd LDN-what medication is that?have heard of a few,but not that one.I will be glad when I can talk to a specialist.There are only 2in the whole state(fl)and of course,neither are close to where I live.I have wanted to try holistic treatments,but have been told that was not a good idea by my neurologist,and primary dr.am still deciding though.Am more scared of needles and side effects.I know I need to make a decision and stick with it,but I am scared.Have stayed away from chat rooms and ms support groups because I thought it would only scare me more,but have found the opposite!I have found relief and comfot.Thanks so much!

to nurse nancy- I don't now about the o bands,but I know with the spinal tap I had 14 cells when I should have had 9.At first the dr thought I had guillian buirre(ooh,the spelling lol),but after the mri's it was pretty clear that it was ms.I am pretty lost at this point because I am just now seeing a dr at a volunteer program,they are supposed to hook me up with the right people(fingers crossed).so am staying optomistic ;) just want to get the right info and make a decision,am doing my research,and asking lots of questions.I do find that the more I research,the more scared I get.Thank god for my mom/boyfriend/family&friends!And this site has been such a godsend! Also what is LDN? thanks!

I will add my two cents worth here also. I have been on Avonex for umpteen years and have done OK. If one of your concerns about being on one of the meds is the money each one of them have an assist program.

Rebif assist program is good. I only had a $50 co-pay. Gilenya was too much paperwork and they needed tax returns and things directly from doc.s's office. With all this identity theft, I'm not comfortable releasing all my personal info. Just giving ins. info and getting doc to write script on Gilenya go program my monthyly co pay was $250. That's a car payment to me. LDN is less then $40 a month and I think MS is an off label use. From what I read, its effect on some of the symptoms are within days. Besides it's a pill with few side effects. It is not biological like the interferons.

Rebif even sent a nurse to train me on how to use. If I had to go back to a needle, I'd go back to rebif. I have a friend who uses copaxane and he swears by it. He likes it so much that he tried to get me to switch. Get a second opinion if you can.

Welcome to NT...

Lots of good info on these posts...make sure you keep a symptom journal with dates of onset and dissipation...

I've been on Copaxone for over 3 years now, no new lesions. I am on lots of meds for symptoms, though...each day is full of surprises with this disease:rolleyes:

As my late sister always told me, never give up...fight it, and get as much info as you can. An informed patient is an empowered patient.

Hello and welcome Sessa

I was Dx'd in 2001, my lesion load very very high and the question of should I go on a DMD never came up - my neuro just told me to choose one. It never even occurred to me that I had a choice.

Glad I did though, because I am still mobile, not progressing much and feeling better (MS-wise) than I have in a decade. I did Betaferon for nearly eight years, but I went off that because I was getting hammered by the side-effects. So then I switched to Tysabri, and that has done me wonders. I have done that for just over three years - I am yet to have the JC test yet, but if that is OK, I think I will just stick with it.

I would think carefully if I were you, when you make your decision. Statistically (correct me if I am wrong someone), your outcome is better if you start with 'sensory' symptoms only (tingling, numbness, vision etc), but it is a much bigger deal if you start with 'gross motor' symptoms. Not quite sure where your symptoms fit in, if it compromised your ability to walk.

Good luck with your choice. Keep us posted.

Regards

Lyn

To Lynn;
my onset was in oct.of last year(11),so it's only been 4mo. since dx and original symptoms that led to dx.I was numb and had muscle tightness from the bellybutton down.It started with just the toes,but by the time it was realized that I had ms,and they started the steroids,it had moved up to my waist and gotten really bad(5days),I couldn't feel my lady areas and that was the scariest part of it all.

I didn't think it would ever go away,and was a nervous wreck.once I started the steroids it got better,and in about 10 days it had gone almost completely away.Now I just get waves of tingling in the legs,and a little across my middle back maybe a couple times a day.It almost feels like when you get a chill. Thats the best way I can describe it.I was able to walk fine,even when it was at it's worst,but it did feel really strange.And sometimes my legs feel weak,but still with that I can walk just fine.Thankfully! I see my doctor in 2 days and am gonna go see a neurologist that knows a little more about ms than my primary does.
I think I would prefer not to take the dmd's but if I absoluutely have to,I will.Have heard about the LDN,but am on pain medicine,so I don't think I will be able to take it.Am not sure if I can stop the pain meds yet,but if I have to take any type of med for the ms I would prefer the LDNand would then quit the pain meds.any thoughts anyone has would be welcomed.Thanks!

I've been injecting Betaseron 1b since 2002 and my disease has remained stable. I too started off with a numbish sensation down one side of my body. The docs say that these "sensory disturbances" with M.S. tend to have a better long term outcome so don't despair!
Wait and have a serious talk with a Neuro before you throw any baby out with the bath water as far as choosing a Disease Modifying Drug is concerned.
They only work in the beginning phases of M.S. so keep that in mind! The idea is to keep the disease in an early stage which is what these drugs try to do.
I have tolerated the shots well and so has my brother in law who has taken them for 16 years. I don't like taking shots, and my skin looks like a bruised mine field! But I feel well and have only incurred one new lesion on my brain since I began the shots.
You can also talk to the doc about the new pill for M.S., but it has far more possible side effects than the shots.
When I was diagnosed in 2002, my Neuro sugguested Betaseron (the first M.S. drug) and I trusted her judgement.