new M.S. diagnosis
 

I am new to this site,and have a question.I am 33 and was dx with ms 3mo ago after going numb from the waist down(it started in my toes)after going to the e.r. and being admitted,they did the painful spinal tap,and 5MRI's.They then said it was ms,gave me I.V.steroids,and sent me home with a referal to a specialist(that I cannot afford) I am now in a volunteer medical program that will get me in touch with the dr.'s I need,and was told I need to be on treatments.I have 1lesion in my brain,and 1 on my spine.I am absolutely terrified to go on the DMD,and want to know what anyone might think.Am taking vitamins,and have changed my diet significantly.I have been feeling great except for the occasional tingle in my back and legs,and some fatigue.Any help/suggestions would be great.what do you all think about the pro's and cons of treatments or not taking them at all?

Hello sessa and Welcome to NeuroTalk :)

Using one of the DMDs is usually recommended. What you choose to do is your decision. There are those who use DMDs and those who do not. I have never used a DMD.

Best wishes in your decision :)

Welcome sessa, to NeuroTalk..:hug:

I did a couple of DMDs to no avail and felt awful. I have only been using LDN for the last 9 years and feeling pretty good, considering.:D

Like Snoopy said, the choice is yours and for a few, the DMDs seem to work. I hope one of them works for you..:)

I was using Rebif for the first year after diagnosis. It is expensive. Perfect hindsight is that I would not use a DMD.

But there are LOTS of people who differ from my own decisions.

I don't recommend using a DMD but the key word is "I." Everyone has a different take on them.

I am not opposed to people using a DMD.:) Some of the nicest people on NT will swear by its positive effects.

My suggestion/caution would be to talk to LOTS of people and do LOTS of research before you make up your mind. I was on Copaxone for about 5 years, and have been on "break" from it for almost 2 years. I'm still trying to decide whether or not to go back on it.

I'm almost 62. I honestly think if I were your age, I'd do whatever was possible to lessen the likelihood of disability. Note I say "lessen", as it's a calculated risk either way.

Again, you will meet people who are terrified of the DMD's, and those who are terrified not to take them.

no one can walk your path for you. MS is like a finger print. its so individual. What cripples you, may blind me. Some folks do great and last a long time with big gun treatments and others fail off each and every one of them. You wont know how each affects you till you try.

My story is that I went on Betaseron. carefully chosen after much research. A few months in, I set a clinic record for liver enzymes and was removed from interferon drugs. I was switched to copaxone which was very easy to take. Took about a full year before I noticed it was really working, where as the interferon stuff works quick. After about 3 years I noticed after each shot I felt horrible. I got sicker and sicker. Then each shot would leave a dent. My psoriasis went crazy! I couldn't think, I didn't want to eat, I was losing my hair, and felt just horrible. I begged for about a year to be released. After one year of begging and 4 years of being on it, I released myself. it took a couple of months, but I knew after how much better I was feeling it was the right choice.

I eat clean (the makers diet) I exercise (walk 3 to 5 miles a day) and I make sure to keep every MD appointment. I only take steroids for the optic nerve stuff, and yet this past December I had a HUGE attack that landed me in the big girl hospital. IVSM for 5 days, and yet my optic nerves still atrophied and curled. I left with 20/400 vision. Would this has happened if I was still on the DMD? Who knows?! and I cant beat myself up over it. I was truly miserable on it, and was willing to take this risk.

Please do your home work. If YOU choose to go DMD free, please know there are many that do. DMDs have a huge rate of folks walking away because they hate it, but others stick with it, terrified of having attack after attack. It is supposed to make you have LESS attacks, and if you get an attack, its suppose to make it less severe. The disease will still march forward, but if that drug works for you, its at a slower rate.

its a hard decision. Read everything you can read. Gluten free, makers diet, Swank diet and vegan diets seem to be popular choices. Some folks choose Avonex cause its only once a week instead of everyday. its YOUR body, and in the end only YOU can make choices for it. Please expect others to slather you with their opinion about it, and be prepared to stand up and say "this is what I choose"

Good luck no matter what you choose, but dont choose out of fear, please choose out of education, research and digging into what is best for your life. ((hugs)):hug:

Hi and welcome to NeuroTalk!

Whether or not to take a DMD.......that's the $64,000 question! :rolleyes: For some folks it makes a huge positive difference. Others it doesn't. The only way to know how you will respond is to try one....or three! I tried Copaxone and Betaseron and could not tolerate either. I'm taking LDN now and tolerate it well. Not too many folks cannot tolerate LDN.

For me, personally, the side effects from the DMD's were just not worth the small percentage they offer in reduction of progression. It might be more worth the side effects if they had a better track record. But, just like MS, it's an entirely individual thing.

Do lots of research and ask lots of questions. You'll find some great support here and lots of experience. :)

Welcome and sorry it had to be under these circumstances. You'll have to try and see what works for you. I have tried rebif and Gilenya. I hate needles and rebif left stains on my legs from the med along with prick marks. Gilenya wasn't bad but unaffordable with even health ins. Now I'm natural. Fatigue and balance are my biggest issues. Tried nuvigil and lost 5 pounds in a week. Still losing but at a slower rate, now on amatadine but wanna try LDN but having hard time finding doc to prescribe.

Good luck and try to stay positive. You can do it, you just have to make adjustments.:)

Hello sessa
 

Welcome to Neuro Talk. You have found a really great place to go for information and compassion. I hope alot of people will respond to you and the question you have over your treatments. I am so sorry you had this diagnosis. This illness can be very scarry. There will be the support you need here to deal with this and help you emotionally. I found this site while I was a real basket case. I was calmed, and informed, and got the gift of friendship. You will too. I do wish you all the best. ginnie

Hi Kitty
 

Hi Kitty, I still have so much to learn about these conditions you and others have. Can you please tell me what DMD is, and about the other forms of treatment there are. My cousin has MS and she has never wanted to tell me about the meds. she takes or what they are. The more I know the better. Thanks Kitty. ginnie

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.