I'm new here..Newly diagnosed with MS - My MSAA Community

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I'm new here..Newly diagnosed with MS

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Hidden

This is my first post..I don't usually do these kinds of things but I thought that I'd give it a try.

Looking back, I had SEVERAL MS symptoms at the age of 16. We thought it was stress. I didn't have an MRI done. 6 years later (now) I relapsed and had optic neuritis. I saw my primary care provider, then the ophthalmologist, then neurologist. Had an MRI done. They found multiple lesions on my brain. I received 1 GRAM (1000mg) of steroids via IV every morning for 3 days and I absolutely hated how I felt afterwards but it greatly reduced the inflammation of the optic nerve. They ordered a spinal tap for cerebral spinal fluid, and blood work as well in which it came back abnormal.

I was diagnosed with MS 16 days ago at the age of 21 after all those tests.

I don't know what to expect...I have so many questions..one being if the medications are worth taking. I really don't like taking medications because of all the side-effects and the damage it can do to the body. I'd love your help and feedback about the medications. I'll be taking Aubagio soon.

29 Replies
oldestnewest

Welcome to our crazy 😜 group of MSers. This is a great place to vent and find out lots of information about MS from people who care 👍. I am currently on Aubagio for the last fifteen months and doing great 👍. Last two MRI’s were stable and no relapses 👍🙏. I was diagnosed twenty three years ago and have been on seven different DMT’s thru the years. Started on Copaxone and after seven years it quit working and on to the next. As better DMT’s came out and others quit working I moved on to the next 👍. For me I think they have slowed down the process of MS and allowed me to stay active 👍. I have a brace on my right foot for drop foot and if really tired or on uneven ground I will use a walking stick. I was diagnosed when I was 39 years young. I am now 62 years young and still upright and driving 🙏. This monster effects everyone differently as you will find out. For me I truly believe in DMT’s. Get a great neurologist that specializes in MS and a regular doctor both on the same page makes it easier 👍. Stay positive and don’t let it control you, you take charge and control it 👍🙏🐾 Ken

Hidden
Hidden in reply to Kenu

Thank you kenu for responding! I appreciate your feedback. I dont know what to expect from the DMTs but I hope for the best! If the meds don't work or something and I have to try another one or dont like it, it's great to know that another person (yourself) and possibly more individuals are strong enough to keep fighting and try new medications!😁 It definitely helps me.

Hi Hidden and hello from the wet uk. Kenu has given you great advice. If I was 21, I would certainly give Aubagio or Ocrevus a try. I am also 62, dx 2010, PPMS, have never been offered a dmt, but you have your whole life ahead of you. Listen to your doctors and listen to your body. We all react to medication differently, so until you give it a go, you won’t know. Keep us posted as to what you do, blessings Jimeka 🦋 🍫

Hidden
Hidden in reply to jimeka

Thank you jimeka for your feedback!😊 I'll keep that in mind. 👍

Lovely to meet u from the UK xxxxx 😊😊😊😊😊 I have started Tysabri was diagnosed last December but I think I've had MS a lot longer 🤔🤔🤔🤔

Welcome! Yes, eventhough each of the DMTs have side effects, we are very fortunate to be living in an era when they are available. The DMTs give us our best hope for a normal life.

Hidden
Hidden in reply to Iona60

Thank you Iona60 and yes I agree with you. Medication has come a long way. I guess the huge thing is accepting this diagnoses and having the HOPE that everything will be alright. I dont know how my body will react to the DMT's but like you said it gives us hope and I really appreciate you saying that. 😊👍

Iona60
Iona60 in reply to Hidden

It may take a while for your system to calm down after you start a DMT, and to adjust to any new meds for symptom control. It took me two years.

Jesmcd2
Jesmcd2CommunityAmbassador

Hi Hidden 🤗 welcome The 1st thing I can tell you to expect, is it WILL BE OK.

It might be a bit differen but you will be ok.😊

As with taking any DMT it's a personal choice. One between you and your Dr.

But studies have shown that starting one, helps slow the process down. 😊

Plz feel free to ask away here. It's what we are for.😊

J🌠

Hidden
Hidden in reply to Jesmcd2

Thank you Jesmcd2! The diagnoses has slowly been hitting me and it seems to get harder and harder but I appreciate the support and the opportunity to talk to other individuals who are going through this as well. 😊🤗

greaterexp
greaterexpCommunityAmbassador

I’m sorry about the diagnosis. It took awhile for me to absorb all the information and the diagnosis itself. Finding this site, where everyone patiently answered my questions and offered encouragement and support, was incredibly helpful. I’m so glad you found us.

It looks like you and your doctor have chosen a DMT (disease modifying treatment), and I hope it works well for you. I understand the reluctance to use medications, but I feel it’s so important to slow any progression and prevent relapses as much as we can. Sometimes medications for treating symptoms can can be life changers, too.

I’m sure you already found MSAA and all their very useful resources. Our little family here can understand so well what you experience, so come and share as often as you like.

Hidden
Hidden in reply to greaterexp

Thank you greaterexp. I'm glad my neurologist provided me with some resources (including this site) to help me cope with this new trial. It's good to know that other people have been through the same thing and TRULY know how one feels. 🙂😌

I’m sorry for your diagnosis but now that you know what you have, you can fight back! There are so many options now for meds, if Aubagio doesn’t work out for whatever reason.

I hope you have a great support system in place but we are always here for you too. Welcome!

Welcome! This site has been one of the most useful sites I have found for information and support.

Welcome to the site Hidden sorry for the diagnosis. Like others have said, you will want to start on a med, and if that doesn't work there are plenty out there to try. We are at a time now that there is so much happening in the study of MS, new drugs have been coming out to help us manage our disease better! Hopefully, a cure is not too far away ;)

Nice to meet you, look forward to getting to know you!

Jessie

Sorry about the diagnosis but know that it isn't a death sentence. Your life will change, some of your dreams may not be met. But you are still young and have a chance to slow it down to a crawl or even put it in remission. There are a lot of new drugs out there. They don't all work the same on everyone just as this disease isn't the same for everyone. The best thing you can do is keep your chin up and stay positive. MS will not stop you from living your life if you don't let it. I was diagnosed in 2005 when I turned 50. I've probably had it since 1970 as the first symptoms started showing up then, mostly fatigue. The doctors just thought I had low thyroid. I never had more than one symptom at a time & it was mostly fatigue. It took my face going numb to get an MRI. Then my life changed, for the better as it was a blessing to have the diagnosis. I finally had an answer as to what was happening to me & I was able to start treating it. I have taken 3 different DMTs, so far the Copaxone has worked the best for me. I tried Tecfidera & it didn't work very well for me at all. As Kenu stated it is important to have a neurologist that specializes in MS as they are more up to date on the latest treatments and a regular doctor that will work with the neuro. Keep positive as stress will only make things worse and remember that every day is a new adventure! God Bless.

Kflo welcome to the group.Also diagnosed in January with MS although I am 47 years old.Big shock to system to be told as was always active with sports.Brilliant people on this forum who are willing to share their knowledge & experiences.Very helpful in the early stages when you need good advice.Try to stay positive if possible & hope you get a treatment that suits you.All the best😀🍀

Hidden, I am sorry you’ve been diagnosed with MS. It saddens me that you are so young to be burdened with this. But all that said, no two people share the same MS experience. I pray yours is a ‘milder’ form as mine has been, and that you have an excellent MS specialist/neuro working hard to provide you with the best info and meds available. Welcome! We wish you had no reason to join us here, but if you have MS, this is the best place to be. 💕

Kilo, welcome 👋. I started with Avonex but it had so many side effects, I couldn’t stand it anymore. I’m on Copaxone, I have been on it for a while and no dramatic side effects. I have a good Neurologic and that and friends and family really make it easier to keep your attitude on the positive road. 😊

Hidden
Hidden in reply to Babslover

Is that the injection? I know every body is different and may react differently to a medication but I was considering copaxone. Does that give you the risk of liver damage? Are all medications like that?

Hi there! Welcome to the best forum for positive and helpful support!

Aubagio was a good drug for me. I have been on 3 but am not on any now because of issues with pneumonia. Its like rolling the dice, not being on an DMT, but i trust my neuro.

Another thing u may want to ask ur doc abot and look into is nutrition. If u r an athlete i am sure ur diet is already good but u can always see what is out there for autoimmune diseases. Dr Terry Wahls story is very inspirational. She has a cook book out also

It doesnt hurt to have 2 ways to slow the progression on ur side!

Again, ur health team of docs is the best source to help make the plan that is rite for u. Just keep asking questions and be proactive. Ur life isnt over, u r just getting started and ur journey is ur own to make.

Hidden
Hidden in reply to Midgey_Midge06

Thank you Midgey-Midge06! I'm just a bit hesitant about the medication because I'm not a fan of taking meds (because of the side-effects haha) but it helps slow it down and like you said having 2 ways to slow the progression which may help! Thank you! 😊

Midgey_Midge06
Midgey_Midge06 in reply to Hidden

I know. U end up on a lot of meds with this disease. But its not really for side effects. Its for the things these stupid little lesions end up doing to ur nervous system. So if u can stall out that progression - maybe less meds?

Its a thot i dunno. Def read Dr Wahls protocol. She was in a wheelchair and a year later was walking with a cane and eventually back to her old life by changing her diet. My neuro says there is merit to what she did but its not been studied enuf to say “yes it can reverse damage” ya know?

The one side effect that bugged me on aubagio was the hair loss. Other than that it was great. Supposedly ur hair comes back after 6 months but i never gave it the chance cuz - well i am vain abot my hair 😁😁😁

Hidden
Hidden in reply to Midgey_Midge06

Well I already lose a lot of hair because I have naturally curly hair..so we'll see how much more I'll lose haha😏 oh well though.

But yeah I meant like I'm scared of the side effects the medication causes. But yeah..all for slowing the progression of the lesions.

Midgey_Midge06
Midgey_Midge06 in reply to Hidden

If u read all the warnings on these medications u will scare urself to death. I did in the beginning and got cross eyed. Instead ask ur doc what he knows r the side effects and go with that maybe just so ur not scared

Hidden
Hidden in reply to Midgey_Midge06

Thanks, will do!

And as far as having a diet to "reverse MS", I've heard many things about how diet helps. I've heard going gluten-free helps. But yeah like you said, they haven't done research or at least much of it.

Midgey_Midge06
Midgey_Midge06 in reply to Hidden

U so need to read doc wahls protocol. I cant sing its praises enuf. It walks u thru her personal trial and error with the diet she came up with. She actually came up with 3 stages of the diet.

It’s great to have support from people with different experiences, as MS usually effects people different and there are lots of new DMT now available. Great advise to work close with Your neurogist DR to chose best DMT to stop any progression of disease, and modifiy if needed. Unfortunately there has not been a cure, but prevention is important and there are many DMT that are very adaptable to your body. Hang in there, keep positive, eat healthy ( there are lots a great MS books, the Wahls Protocol is a great book for MS education) and stretch everyday 😊

I was diagnosed at age 60 but looking back symptoms began at age 35. (right leg numb and painful) MS was not something docs were familiar with. My internist said I should have another baby and take my mind off myself. I already had 3. the funny thing is I got up from chair and walked out of office without any pain. Made me think maybe it is all in my mind. The numbness would come and go. I had to go to bed for a day or two and just rest it and feeling came back. this only happened about 3x/year so I just lived w/it and went on w/activities. I was an avid tennis player (for fun) but other MS symptoms showed up re: eye site, balance, coordination and again, I would just rest in bed for a day or two and symptoms would improve. However, when right foot drop appeared I made a conscious effort to find out what was wrong. I tripped and fell many times resulting surgeries for broken ankle, broken leg/ACL tear/Knee replacement, and hip replacement all on the right side. A good friend suggested I go to Dr. Fred Lublin at the MT Sinai MS center. MRI, spinal tap, etc.confirmed MS (relapsing/remitting). I started on daily injection of Copoxone and stayed on for 5 years. Switched to Tysabri 1x/mo infusion. I get tested every 6 mos to be sure I do NOT have JC Virus. If I did have it, I would have to switch meds. so far so good but my MS doc thinks I am advancing to Progressive MS since my balance/coordination continue to advance. No new lesions appear on MRI and still cognitively ok but taking another MRI in May to see if any changes. He tells me there is a advanced formula of a present drug treating MS that hopefully will be approved by FDA in April. If so, he will switch me. I want to say I TRY not to let MS define me. I have a small dog (get up, get dressed, you'll feel better) so walking her 4 x/day is good therapy. I'm 79 and walking, talking and driving. my tag line: I don't live in Syria, no one is shooting at my family, etc. Staying positive in the midst of some difficulties is my answer. Matter of fact my doc says it's the reason I continue my independent living. Do I like it....Hell no.....but when I have 1x/mo infusion, I walk out saying "at least I don't have cancer". Gratitude in action.

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