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