Hi all, well here I am. 42 years old and diagnosed with ms. The neurologists are very "here take the brochures have a read and met me know what treatment you want to start". I feel so lost. My brain says ok you have lesions, will my life get worse?, will I eventually stop walking? Can i live a healthy normal life , od so what do i do to ensure that?. Itsall drowning me. What to eat , my symptoms were just dizziness. Last 5 months pains in thighs non stop , dizziness and feeling hot. Who knows where the symptoms are coming from. I have another mri Monday amd fear having more lesions is this a normal feeling ? A lifetime of trauma and well here I am. I wish I wasn't such an empath and looked after myself . Maybe I would be here. Please anyone , help me understand the steps pr what a future may look like I'm scared.. love to to you all UPDATE: had my mri and 5 lesions in 2 months I'm terrified. Now talking treatment. Kesempta or ocrevus. Anyone have 10 lesions?
Diagnosed in march. I can't believe its ... - My MSAA Community
Diagnosed in march. I can't believe its happened.
Of course you’re scared. I don’t know anyone who wouldn’t be scared given the symptoms and your experience with the neurologist. Is the neurologist that you’ve seen someone who specializes in MS? That’s important. I’m sure others here will provide good input. If you want to get some additional info, you might want to get in touch with the MSAA. There are good resources available. Please be kind to yourself and keep us updated. All the very best to you!
Have you been diagnosed with Relapsing Remitting or Primary Progressive? That's important to know if you want an idea of where this is all going. Having said that, MS is annoyingly different for each of us, so there's really no way of knowing.
If it's any consolation, I've had problems since 1980, and I'm still living alone and doing for myself. I worked full time until about 4 years ago. We have a lot of much-older members who are still actively farming and gardening. You will have to adjust some of your activities as time goes on, but once things settle down you should be able to see a pattern and figure out what works for you.
Whatever you do, stay away from miracle-cure websites! Learn all you can from legitimate MS sites. The diagnosis can be a shock, but just remind yourself that you're still the same person you were before. You just have a name now for the weird things that have been happening.
Didn't tell me what time of ms I have. I'll ask. Ps are you on medication? I'm scared to start
There were no drugs back in the day, although I did try Ocrevus briefly. It seems to be the best one out there right now, but they all have potential side effects. Just take your time and read up on all of them. Check the forum for personal experiences, and find out what your insurance will cover. Some are incredibly expensive. There are many of us who have muddled along without medications, primarily because we had no other option, but the current belief is that the drugs can help if you find the right one.
Is that the fear, did you get worse with no medication? That my fear..
I would have to say yes. The people who have successfully used the new meds seem to have a better time of it in the future.
How many lesions do you have, I'm fearful with my diet scared what I'm eating will make me worse. Dairy gluten etc
No clue. I don't pay attention to any of that. According to the "professionals", the bulk of my symptoms stem from spinal lesions, but I've never had any. Mine are all in my brain. I've also never worried about my diet, although I'm not big on meats in general and mostly avoid junk food. You do want to stay as healthy and active as possible, but how you do that is entirely up to you. I'm a fat chain smoker who's addicted to coffee, so I don't take that kind of stuff too seriously. 🤪 I do credit a physically-active childhood outdoors for much of my health up to this point.
I also get most of my fruit from things that start with "blueberry", like blueberry Pop-Tarts, blueberry-filled donuts, and blueberry pies. 😁
Mine in my brain too but worry I'll get a spinal one. You smoke ? I'm too scared to have a drink. Is what you wrote being serious or joking with me?
Been smoking for years, although I've quit a few times. I'm not a big drinker, but I'll occasionally fix some Irish coffee or add a shot of whiskey to a cup of tea. Honestly, just keep living your life. There's so little that's really known about MS, and as time goes on you'll discover what works for you.
If you want to try one of the diets, go for it, but don't feel that you have to. Some people have success with low-impact aerobics or swimming. If you're into that, you could try it, but don't push yourself to start doing things that don't come naturally to you.
For now, just learn everything you can. I'm a firm believer in education, but MS isn't really the scary, devastating illness that it was 50 years ago. I think we've all heard horror stories about someone with MS who went downhill instantly, but that's mostly because doctors didn't usually diagnose it when it was mild. There were no treatments for it, so it was assumed that people would just continue living their lives, oblivious to what was going on inside them. In a way, that's a good thing. I was undiagnosed for most of my life, so I just kept doing what needed to be done and made adjustments when necessary. I don't know if I'd still be this independent and able if someone had told me back then that I had a degenerative neurological disorder that would get progressively worse. Life may be a bit different from here on out, but it can still be good.
How do you keep an eye on it? Do you get any bad symptoms, how the treatment working have you had a follow up?
At the time I was diagnosed, they sent me for MRI's every 6 months. Once those began showing no new lesions, it was extended to yearly and then longer than that. The MRI's will show new lesions when the MS is active. If there are only old lesions, then you just have to adapt to your symptoms.
I generally only get exacerbations about every 4 years, and I can call my neuro and get a course of super-steroids to help stop it in its tracks. It's not an instant cure, and it comes with its own issues, but it does help reduce some of the new symptoms.
Mostly, I just treat my current symptoms the same way I would any other ache or pain. Sometimes I can only sleep by smearing my legs or arms with Icy-Hot. Other times, I can go weeks without even popping an aspirin. I've used hot water bottles or an electric heating pad for years, though. I discovered that when I didn't put one on my lower back, I'd have more pain and trouble walking the next day. I've been lucky enough to not need prescription drugs for my issues, but they can be helpful if you're dealing with a lot of pain or muscle spasms. Herbal tea, a decent mattress, and a fun hobby can also help enormously! Stress and illness will make your symptoms worse.
Mysymptoms were just vertigo or dizziness every now and then but as of the last week pain in thighs heavy legs amd burning in thighs. Think its ms? I worry it's gotten worse as I'm experiencing this new symptom..
Quite likely. It's probable that you're having an exacerbation. Any time you develop new symptoms that last for more than 24 hours and can't be attributed to illness or unusual activity, call your neurologist. Heavy legs have long been an issue of mine, but they range from barely noticeable to I just want to cut them off. Mine get worse if I'm more active than usual or if it's really hot.
Having an mri next Monday from the lasy one 2 months ago. I'm terrified. I whale the neurologist and he says wasn't likely it was ms. What to think!
Well, be patient and see what the MRI shows. Is your neuro an MS specialist? If not, you might want to try finding one.
His special interest areas include Neurophysiology, headache/migraine, multiple sclerosis, Neuromuscular disorders and Epilepsy. All it says
HyHi, anetap4545. Welcome to the community! MS causes uncertainty that can be hard to deal with at times, but we are all here to help and support each other.
Getting on a disease modifying therapy, or DMT, is really important. Newer ones are very effective at preventing relapses and new brain leasions. It can really slow down progression. Everyone is different, but people with MS can still have good lives, and many of them continue to work. It does help to listen to your body and pace yourself to be sure you get enough rest.
There is a neurologist named Aaron Boster who makes excellent videos for MS patients. I've learned so much from him. He's very caring and compassionate. I think the following video might be helpful to you.
anetap4545 welcome to the group, sorry for the reason. You will find this a very caring group with info to share. When I was diagnosed, my Neuro never told me that MS was a possiblity. He gave me brochures on treatments available at the time in 2006 and told me to read them over and let me know in a couple of weeks what treatment I would like to start. Now there are so many treatments out there. Did you narrow down the treatments for you to chose from that he thought would work best? Keep us updated when you can.
He offered me tecfedera or copaxone what do you think?
Forgive me for chiming in. While there are many people who do well on Tecfidera or Copaxone, studies have shown that newly diagnosed patients do better over time if they are started on a newer, higher efficacy drug like Ocrevus or Kesimpta at the beginning. You might want to look for a neurologist who is an MS specialist. It can really make a difference, particularly starting from the very beginning. At the very least, try to get your doctor to put you on something more effective.
This video explains the potential difference.
I started with copaxone after I chose it because it had the least side effects… I don’t think it worked for me. The current option seems to be to go with stronger meds in the beginning to prevent the most progression. I was diagnosed in 2008 and doing ok. I eat a good diet, do not smoke (never did), still enjoy wine and exercise… nothing crazy… balance exercises, stationary bike and very light weight lifting (10-15 minutes)… sounds like a lot but only 20-25 minutes daily. Good luck 🍀
You can’t control what happens to you… only how you react to it. Stay strong… you got this!
This leg pain is frightened me. 2 weeks of it and only has 3 days of relief. I'm so scared.
I know it’s scary… we’ve all been there. Be kind to yourself… relax, don’t push it, binge a fun show… you will feel better… the intensity should pass. The first few years are unsettling as you mentally adjust (mourn even) and try a few meds to see what works for you. It will settle down but unfortunately it takes time. You have a diagnosis now and you can start to manage it.
Everyone's MS is different so their problems and horror stories might not ever apply to you.
Fear is definitely normal. Learn as much as you can. That way, you'll feel more confident with your decisions.
I get the trauma too.
Empaths are some big hearted people 
Good luck on your journey.
Welcome to the forum, anetap4545 Figuring all this is tough and hard when you are given a bunch of brochures and told to choose! That’s pretty much what my then neurologist told me, and in 2006, there were only 3 DMTs available! If you need more information, look at mymsaa.org . I look forward to hearing more from you. Keep Smiling 
I was diagnosed 19 years ago on my 50th birthday. Everything you are feeling is normal. We've all been there. It is important that you don't stress out over it. Read as much as you can just for the information. You probably won't experience everything that they talk about because everyone is different. I would suggest you talk with your Dr about the best treatment for you. You may have to try a couple different ones til you find the best one for you. Take life one day at a time. I look at each day as a new adventure cuz I never know what to expect, a good day of a bad day. My MS has been in remission for 2 years now, so there is hope.
How did you get to remission and how do you know you got there? How often did you have an mri and what med are toy on?
I'm not having any of the MS symptoms that I used to have like fatigue, numbness in my arms & legs, muscle spasms in my legs & the left side of my face & mouth would go numb grim time to time & I always had pain in my muscles. I have taken Copaxone injections, Techfedera, Ocrevus & now I'm taking Vumerity & have been on it for almost 3 years. I get an MRI every 2 years. I haven't had any new lesions for about 15 years. I used to get an MRI once a year unless I had something major going on but that only happened once after I was diagnosed. I do have memory recall problems but I'm also 69 so who knows what that is from. So many things can mimic MS so sometimes its hard to tell. Keep a journal of what you are experiencing & take it with you to your Neuro visits. Also write down any questions that come to mind so you will remember to ask the Dr about it. And last but not least... You have MS.. MS doesn't have you! Be positive & stop to enjoy the flowers & natures beauty. You'll be surprised how much more relaxed it can make you. And being relaxed doesn't let MS step in & make you miserable. I hope this helps you.🤗
Thankyou so much for replying .. Do you think no nee lesions were from the medicine and symptoms stopped from it? How did you get no relapses and stay that way that what I want to achieve.. I've been offered tecfedera..
hi and welcome. This is a horrible disease and so different for everyone. It is scary. I understand but we just have to do our best and keep trying, even in an odd way. Sorta lol. I do things now in an unconventional way. It’s weird. It’s painful. But this med I’m on helps with the pain. I’m on kesimpta. I don’t like taking meds but I need to I suggest Dr. Aaron Boster on you tube. Excellent information! The people here help a lot!as far as what to eat: anything without preservatives. Fresh fruit and vegetables are good. I found that I can’t eat things with regular flour so instead i use wheat flour and it helps. You’ll get it. It’s mostly trial and error It sucks but you can do it and we will help!
So sorry to hear about being diagnosed with MS - Culd you pls tell me what ure symptons are.
Sore thighs unsure if related sometimes pins and needles
Take a deep breath. It's understandable that you're overwhelmed. There's so much info to digest. Many questions, no answers or confusing one.
Be reassured that you'll find your path through this initial shock. You can live with MS. There are a lot of good resources. You can grab a recent book on MS that will take you through the detail instead of reading multiple sources online that might appear to provide contradicting info. For everything else, this forum is a great resource.
Get on the most potent DMT you can get on, as recommended by your neuro with the goal to stop disease activity right away. Then you'll most likely live a normal life for years to come.
I'm in year 6 after diagnosis, under Ocrevus and I'm still feeling lucky to finally have a diagnosis, be treated because many of the symptoms have disappeared - brain fog, fatigue...
Sending you a big hug of support.
Thank you so much m did you ever get sore thighs , burning legs , vertigo or dizziness? I was recommended 5ec tecfedera should I ask about ocrevus? Does it give you any side effects? No medicine for the ms in 6 months.. I'm scared I've done more.damage
Yes, those are MS symptoms, and yes ask about Ocrevus, which is an infusion every six months which is pretty relaxing as the nurses take very good care of you. I have been on it for over two years and no real side effects.
Kesimpta is very similar, but is injected at home once a month using an auto injector where you don't ever see the needle.
Please try not to worry about going six months without treatment. Just take a deep breath, and focus on getting on a good treatment as soon as you can. You can also ask about mental health resources, because it is hard to live with the uncertainty, especially at the beginning.
Try calling the National MS Society to find an MS specialist.
nationalmssociety.org/conta...
Or MSAA
mymsaa.org/msaa-help/helpli...
I know this is a lot to deal with, and you're scared. But once you are in the hands of a good specialist and on an effective treatment, the anxiety eases a bit for many people.
Feel free to message me if you want to. ❤️
It's the leg pain of 2 weeks ota so painful. It's causing me so much anxiety. My legs are heavy and I pain daily and I'm scared something bad will happen to me. I have to work all weekend and it's 1am and I riddled with anxiety.. I'm trying but it's over powering
Heavy legs aren't fun, but it doesn't mean that your legs will stop working or anything, so don't worry. Heavy legs come and go. If they don't go away after you're treated and squared away, there are meds that can help some people.
Pain is a sign that you might be having a relapse and might need more meds. Sometimes burning pain can be from MS being bad for your nerves, or MS can make your muscles very tight, and that can burn. There are meds that can help both, so you don't have to suffer. Please know that symptoms during a relapse often get better or go away with time, so the symptoms you have today are not necessarily ones you'll be stuck with forever. Please read my (ridiculously long) post below.
I website him he said he doesn't think it's ms related. I feel so lost I've seen 3 neurologist and no plan
I really feel for you. It sounds like it's been kind of an emotional roller coaster for you. But as hard as it is not having answers, it really is better not to have it. You should really see if you could maybe find an MS Center at a university. I'm not saying you have MS, just that if they ruled it out completely, you could feel pretty confident that you don't have it. Your symptoms sound awful, though, and I know they're real. Maybe you could see a pain specialist for your leg pain. They can look for spinal issues, etc. I wish I could tell you more, as I know how scary and frustrating this all is. May people with MS struggle to get diagnosed, so find a good neurologist and if they want you to follow up with future MRI's or anything, definitely do that. Do things to help you relax, like exercise, spending time outside, etc. Don't eat a lot of processed food or fast food, try to avoid sugar and sweeteners. Eat a lot of fruits and veggies. This is helpful for anxiety, as well as neurological problems. It may be hard at first, as changes like that are an ongoing process. Yoga, in particular is really good at soothing your body and your mind and can help you cope. You don't have to be officially diagnosed to use this site, so please feel welcome to check in and let us know how you're doing, okay? I hope you get some answers.
Is pain and pins and needles in tongue ms feeling of right throat also? I'm really scared right now
Not that I'm aware of, but everyone is different.
Anaishunter is right about vitamin D. Neurologists usually tell you to take a supplement of 2000 to 5000 iu of vitamin D daily.
anetap4545 I had leg pains prior to diagnosis. Not sure whether it was MS per say or incredibly low Vitamin D. My neuro put me on vitamin D right away and it eased the pain immediately.
I'm on Ocrevus. Started 1 month after diagnosis and cleaned up my diet (no sugar, no dairy, "clean"/limited meat) and at the 6 months MRI check-up, there was no new lesion, and no active lesion. And it's been the same for 6 years.
I have free MRI yearly as part of an ms research program.
Any side effects from oc? . How do you maintain it 6 years of eating that way? . How many lesions did you have amd where?
No side effect from Ocrevus. My neuro requires a blood test prior to treatment to make sure I need it. I'm more on a 9 months cycle than 6 months.
I'm feeling so much better with no sugar, no dairy. I must have been allergic to milk. And once you get off non-natural sugar, it feels really good.
Lesions: i was diagnosed medium to high load of lesions in brain and spinal cord. but the neuro said " the good news is that they're in highly redundant part of your brain.
I have 4 on my last mri 2 months ago amd going for another scan Monday. Hope they haven't gotten worse.. would love to ask you your diet of that's OK. May I message you?
I had 20+ lesions.
I read about the Swank diet which to me explained a lot about good or bad fat, etc...amazon.com/Multiple-Scleros...
then I had found good info on msdiet for life where it was a simple cheat sheet about 1) what you can eat at will; 2) what you need to suppress and 3) what you need to be careful with. this worked for me because I've never been into measuring anything. The diet seemed healthy to me regardless of ms.
Be aware that you need to find what works for you.
Do you have that cheat sheet,?
Hi there, I am sorry to hear about your diagnosis regarding MS after having my second Moderna Injection for COVID - when I walked I felt like I was walking with Jelly in my knee caps also when I was walking through a door way I couldn't line it up I was always bumping my shoulder and arm against the right hand side of the timber in the door frame. It was so frustrating and I always would have bruises up and down my right arm. So I didn't have any more injections I don't like them at the best of times. I didn't tell the doctor as I knew he would put me on tablets for MS. I have never smoked but I worked with passive smokers and my mother always smoked when I was growing up. I purchased the Lost book of Herbal Remedies The Healing Power of Plant Medicine by Nicole Apelian, PH.D who apparently had MS herself and when I purchased the book at the time I didn't know that she had it. I started taking two Vitamen D3, Zinc, Selenium and Magnesium I didn't take them all together I took the first 2 in the morning and the latter early in the evening. I find Tumeric with black Pieperine excellent I take that before I go to bed with warm milk about an inch in the glass. It has been very helpful. so I only take them now when I feel that I need them. but then what it does for one person it may not work for another. Just thought I would let you know as I hated the thought of being on more tablets- as I have been on Thyroid tablets for over 40 years as I was overdosed with radio Active Iodine.
I wouldn't be placing much faith in her - she was warned off by your USA Federal Trade Commission for making false claims for her products in relation to COVID. Basically she was making unsubstantiated claims for her products and making money out of scared people - if she was happy to rip people off in a pandemic she wouldn't have any qualms about doing the same to people with other diseases.
The FTC told her "You are also advised to review all other claims for your products and immediately cease making claims that are not supported by competent and reliable scientific evidence. "
She was advised that "It is unlawful under the FTC Act, 15 U.S.C. § 41 et seq., to advertise that a product can prevent, treat, or cure human disease unless you possess competent and reliable scientific evidence, including, when appropriate, well-controlled human clinical studies, substantiating that the claims are true at the time they are made" and required to provide to the FTC information regarding action she took to address her unlawful false advertising claims.
Thank you.
Sorry to hear of your diagnosls. The future for people with MS varies widely so your future may be OK. You'll need to get on a MS med right away to stop having more lesions. I haven't had any issues with Tysabri or Lemtrada. There is a place that may answer some of your questions:
hi: it looks like you don t have the right neurologist. It is hard to find a good one but that s what I would recommend doing first. Call the ms society they can help. With ms usually comes anxiety and depression. Get an appointment with a psychologist to help you with that.
After you had your mri spinal tab etc you neurologist can intérprete where you stand and what your prognosis is. I hope you will be fine. Send updates🐝
I had a mri in Nov and will again on Monday.. no spinal tap was recommended
I'm sorry to hear that. I have felt confused and unbelieving myself since the diagnosis about three years ago. I only recently even looked at YouTube, thinking that I didn't want it to know that I had MS, and doubting that it had anything to offer. so it was with considerable relief that I found some videos by a neurologist named Aaron Boster that have been quite helpful. they have filled in a lot of gaps in my knowledge of this bizarre disease. good luck. and I totally agree with what Kitsy said. actually, all of the comments seem to be terrific.
You on treatment ?
Yes. I have been on Ocrevus for just under three years. I am lucky that the infusions are easy. I am dealing with the fact that it takes away all my B cells. I just wear a good quality mask when in crowded indoor areas.
Also, there was a great article on MS in the New Yorker last summer: newyorker.com/magazine/2023...
very informative.
Yes! Aaron Boster is amazing at explaining things you can't find anywhere else. I've learned so much from him. The one for the newly diagnosed and the one about treatment styles would be helpful here.
ok . Let s hope your mri on Monday will show no more new leasons
Can be ones happen in 2 months? I'm scared
Don y be scared. I am not a medical doctor but it s possible but not likely . Sounds like you have some fleur ups
Should I start medicine, is tecfedera good?
If you were diagnosed with ms yes you should take medication it needs to be a discussion between your neurologist and you to determine which medication works for you.. I could not tolerate tecfedera after years on rebif now I take Vummerity .you might have to try a few different ones as well. Anxiety can make your symptoms worse so try to relax a bit. There is a lot of good things out there now.
I’m probably the biggest nerd on the forum …. Here’s my take. Knowledge is king but be aware of good intending but wrong ‘experts.’ MSA Focus, anything from Drs Aaron Boster, Ben Fowler and Brandon Beaber on YouTube can be trusted. There are many others but those are 100% good in my book. The first year is sickening hard but you’ll make it through it, knowing what to expect should help you.
I had a three month waiting period between my initial working diagnosis and final diagnosis of SPMS from my MS Neuro. I called almost everyday to try to get in , hoping for a cancellation, many times crying as I was worsening daily and knew I’d soon be unable to walk. It was terrible but I made it in and started a DMT, disease modifying treatment. Now MS is a daily struggle BUT life goes on! I still work daily on my ranch. I can’t get in the saddle without help but, and this is a big BUT…I know I can beat it and will!
So hang in there! You can do it! We all have our different stories but we have one thing in common… never give up!
I’ve loved Christina Applegate gate ever since she played Kelly in Married With Children. Here statement on MS is perfect… “F.U. M.S.” is a bold and true statement!!!! Make sure you have a good Neurologist that specializes in MS. Good Luck!
Here's where my confusion is.mri in Nov was told I had new lesions but they could have been there before they were unsure now mri in Monday. I've had horrific burning pain in my thighs and been ongoing for 2 weeks. Can I have mew lesions in such a short time? I don't know what type of ms I have he just said I need to start treatment. I was Aaron's videos but am lost as I dont even feel confident in my diagnosis, just have lesions take meds.what do I eat , how do I stop new lesions , what if tecfedera doesn't work ,,
I am so sorry this is happening to you. I understand that lesions are terrifying, but focusing on them isn't going to help. Treatment will help, and help keep you from getting more lesions. If you are in the US, the way forward is to call the NMSS (nationalmssociety.org/conta... or MSAA (omymsaa.org/msaa-help/helpli... to find an MS specialist, or at least a better neurologist. FrancesB just posted a resource for those in Australia. Please tell them you are suffering great anxiety and ask if they can make suggestions about that.
Do you thigh muscles feel tight at all? Or is it just burning by itself? It sounds like you may be having a relapse and you might need treatment, maybe steroids. You can call the neurologist you've been seeing, just until you can find a new one, or...
What I am about to say is NOT meant to mean that your condition is an emergency. It's NOT a life or death situation. But if your doctor doesn't respond in a timely manner, or you feel like you really can't handle the anxiety, you have the option of going to the ER and telling them about your thighs and the possibility of a relapse, and that you're experiencing raging anxiety. This has a downside of waiting for hours and not knowing for sure what kind of care you're going to get. But if you are really panicking, seeing someone sooner may help you set your mind at ease.
I apologize for the long posts. I just want to help you, and be really clear about what I'm trying to say without making you more scared. 😊
You definitely need more and better information. Surely that will happen when all the tests are run. If not, seek out another neurologist.
What other tests do I need, I've had bloods, eye test , mri am I missing something?
Did you have a lumbar puncture (a spinal tap)? That would confirm everything. And get in touch with organizations that can supply you with all kinds of info. like nationalmssociety.org They helped so much.
No lumbar said it wasn't needed.
Now then, start your own research. Doctors just aren't that helpful. They are too busy. I never thought I was so on my own til I was diagnosed. I feel like a scientist!
I have done so much reading bit can't do much qorhoit a neurologist. What should I do after this mri, what should I ask should I start treatment asap?
Like irhunter said, the first year is very hard. The new diagnosis drove much fear and anxiety in me. But it all settled down and life just went on with all the normal day to day highs and lows. You are terrified, as was I. As others have said, try to find a neurologist whose sole focus is MS. Once you feel more confidence in your doctor and start the appropriate medicine, you will feel less out of control. To the best of your current ability, exercise. It makes a big difference in the long run.
A post you put up not long ago in the Thyroid UK forum on this HealthUnlocked website indicates that you are in Australia. I strongly recommend you contact the MS organisation in your state for support in dealing with your diagnosis, and getting accurate information about treatment options and costs in your own country. You can also connect with an MS nurse and get answers for many of the questions you have been asking in this thread, as well as access online resources (articles and webinars) on topics such as diet, medications, exercise etc etc.
You can find the contact details for the relevant MS organisation in your state on this webpage - if you click on the logo for your state it will take you to the state organisations' websites.
msaustralia.org.au/supports...
People in this forum almost always assume that others are Americans like they are and they are mostly unaware of the massive differences between the health systems in the USA and Australia, so some suggestions being made regarding seeing a different neuro may not be viable if you are being diagnosed and treated within the Australian public health system.
Hello 👋🏼! MS is different for everyone so your symptoms and what becomes of your illness cannot be told to you by one of us. Try your best to continue to move/exercise/move and stay stress-free.
When I had to pick a medicine, I did read through the various packets, I highlighted things such as various alms that I did not want and anything else that scared me. And then I put them in order from top to bottom of which medicines scared me the least and I accepted the delivery/taking of the medicine. I asked my male doctor which one would he choose if it was his wife, Sister or daughter needing to pick a medicine. And he said the same one I Chose so that’s the one I went with.
I know that it is overwhelming, but try to stay calm breathe and do what you have to do. I wish you well.
What did you chose, I'm scared if more lesions, scared of it getting worse..
I've read through the comments so I don't repeat what others have said. You've asked about Techfidera a couple times. That was the first med I was put on. It worked but the side effect for me was it caused my white blood count to drop. Then I was put on Copaxone. HATED giving myself shots, but I did it. I was really glad when I had welts everywhere from the shots. Yay! Then I was put on Aubagio. One little pill, once a day. For me, that was the one. Now it's available in a generic so that's what I take.
My first clue that something was wrong was I kept falling. Then, once while riding a bike my legs stopped working completely and I fell over. One concussion and four breaks in my arm later and I'm having an MRI. That was ten years ago.
I'm walking still. I do keep a cane in my car for the days I'm a bit wiped out. I don't have to use it much. My biggest annoyance is my brain fog. I write everything down that I must remember in either my Notes or Calendar in my phone.
Please try to calm down and not be so stressed! Your diet, etc. won't affect you as much as stress. Soft music, deep breathe, even watching a movie to take your mind off it to give you a break would be helpful.
Try not to get overheated. The National MS Society has a program for free cooling vests. There are several styles that you can see which would work best for you.
I'm dizzy, but always have been don't know of is anxiety or ms. Dizziness gives me anxiety. As of late painful legs, painful tongue so scared I've gotten more lesions. How brave to keep changing meds.. did it get worse in between?
Nope! Some meds "carry over" so I was fine. Have you ever thought of an anti-anxiety med, even temporarily? It may help you calm down and relax. I got on meds as soon as I could and when one didn't work, went to another. Meds are our best way to hold this disease off. I firmly believe that.
I agree with Mrsmike9 however, my difference and medication was that I started off with Copaxone but I hated giving myself shots so I moved on to Tecfidera but my white blood cell count greatly dropped. Now I am on Ocrevus. I was doing fine working and everything, then I’d let a stressful event in my life take over me and my mind which led to affecting my MS.
How so
It's what I'm scared of changing medicines , with dealing with side effects I hate taking medicine
I was working on the assembly line in an automotive factory however, almost overnight I walk with a walker, if it’s a long distance I need a wheelchair. I can no longer cook or drive. I must use a shower chair (the one that slides from outside of the tub to inside of the tub) and I had to have grab bars put into my bathroom. I no longer sleep in the bed with my husband because now I have a medical bed. Foot drop and trigeminal neuralgia came from nowhere with other various symptoms. I was told by a Dr that the pattern of my MS does not make any sense. Another doctor told me that My MRI and my disability does not match. The various tests, etc. are coming back normal and how my MS is affecting my disability it’s not seen. I have had various doctors Tell me that it has to be stress.
This scared me
Sorry to hear about your diagnosis. It sounded like the beginning of my story. I was diagnosed at about the same age. A highly reputable MS doctor shoved a bunch of brochures and told me to pick my treatment. When I tried asking if I could take no medication at first, I was met with an emphatic no.So I started on Tecfidera first (close to no side effects but completely useless for me). Then, they invented Ocrevus. Ocrevus made my condition (and that of many people on this blog) much worse.
It did? What are you doing now to manage it?
Diet and exercise. I also had the stem cell therapy.
Is that the one in Mexico? I feel really lost friend I don't know how or where to start to get better.
Yes, the one in Mexico. Please do not despair. I will DM you.
Thank you so much
Actually, it wouldn't hurt to repeat it to everyone on this blog.
Get several doctors' opinions.
It is important to avoid the following inflammatory foods:
- Sugar
- Gluten
- Cow dairy
- Oranges/Grapefruit
- Peanuts/Peanut butter
Acupuncture has helped some people here, not me personally.
Make sure you get tested for heavy metals.
Also, get your vitamin D level up.
It is a long journey. This blog is very helpful.
when i was diagnosed , I didn’t believe it. My neurologist wanted me to try Tecfidera, I didn’t take it at first. She had told me she had never seen levels as high as I had, plus my mri lite up light a Christmas tree… she said start this and I’ll see you in a month.. So I got a second opinion from an ms specialist, because I didn’t think her decision was the best for me.
my ms was confirmed during second opinion and I was given the best advice from my ms doc, He told me to think of my ms on a spectrum. You can a bunch of lesions or just one, it’s more of where the lesions are as a pose to the amount.
I’ve had ms for 7yrs, diagnosed 6 yrs ago; on meds for 5yrs. I’m on ocrevus. It’s a scary disease and I hope you find a doc that can help you. Where ever you are at, research with your primary and hopefully you find an MS doctor to help guide you.
We r all here for you to help in any way we can.
Keep your head up, keep asking questions until you get answers that make sense.
I got a second opinion and she said it was ms. Handed me brochures and sent me on my way. Should I start tecfedera I'm scared. They won't tell me where on the brain they are and what it means so waiting for another neuro is November amd I'm scared waiting that long will affect me. I have a list of questions I'll take back to my 1st neurologist and getting another mri from 2 months ago. Having it for 7 years what's scary about it? Has your life been normal?
The neurologist that ran all the test on me did the same, brochures and a medication and I’ll see u n a month.. the thing that broke me when I asked how bad am I, she said I could go down hill at any moment. Not something you should be saying… I never took the medication she gave me, it was tecfidera.. so waiting for insurance and figuring out which ms specialist I wanted to see, I waited 9 month before seeing my new doc. 1 more month for treatment, which became ocrevus.
There are things that we can do to help ourselves with this ugly disease. I exercise more, eat less junk and drink more water. I don’t have a specific diet, I’ve just learn to eat less. I also make it a point to take care of my mental health. Most important thing I’ve done. Think positive thoughts and do my best to be appreciative of what I got and not focus on what I don’t.., it’s been hard having ms, not gonna lie about it, what I can say is it would be a whole lot worse if I didn’t have the mindset that I do.. this is your new life, you will have limitations, and knowing /accepting those limitations is key to enjoying your new life. I walk 5 miles everyday, whether I’m able to knock it out in 1 good walk around town or little by little. Wife works, I don’t, so I do what I can around home and I do errands as best as possible. My life isn’t normal like how it use to be, it’s my new normal. I have limitations And I do the best I can do with it.
Have you had any side effects from it? You ever try tecfedera?
I didn’t try tecfidera, almost started it, but decided against it. Didn’t feel like it was gonna work for me, given how bad the neurologist made me seem.
Now ocrevus I’ve been able to take it for 4 1/2 years now and the only problem I have had with it was a rash on my belly. It was only 1 infusion that that happened. Not being hydrated enough didn’t help, so make sure to drink your water.
No new lesions? No relapses?
Nope. “Knock on wood”
Nothing has shown up on MRI’s , no new lesions.. Now with the relapses, idk… I believe I haven’t, I haven’t developed any new symptoms that I know of.
I have noticed that I fumble with my words more, brain fog has been more noticeable, like when I’m talking it’s like the on switch gets flipped off 😅.. from time to time I stumble, my balance isn’t the greatest but it’s definitely not the worse. My appetite isn’t what it use to, which I’m not complaining; definitely not a bad thing. Somethings off the top of my head.
This males me feel.more comfortable trying this one. I had a call with a nurse yesterday and she said tecfedera is old medicine won't work. Try ocrevus. 2 infusions a year and you'll be ok. I just want no sode effects and for it to work be healthy and Live life and live happy be normal. Think it's possible?
It can be possible. It’s working for me. My advice, go with what makes you feel comfortable and allows you to feel safer mentally. Of the options given to me, ocrevus was the best choice. So it’s what I went with and been on ever since.
How did you know it was the best choice?
I only had to pick between 3 medications : Gilenya 0.5mg daily oral dose, Tysabri 300mg Infusion every month, and Ocrevus 600mg infusion every 6 months.
My Ms doctor gave me these choices, and I went with the least hassle of the 3. Take a pill everyday, I don’t like taking the pills that I’m taking right now 😂
And once a month infusions isn’t practical; so twice a year was the choice.
Today revealed 5 new lesions in 2 months. I'm devastated 💔
I’m sorry that there are new lesions, 😔
It’s a tough road we are on, especially for you at this moment… before I went on ocrevus my doctor prescribed steroids to help with any further damage, not sure if your doc brought this up at all… It’s like putting a band aide on, doesn’t fix Anything, but it helps. You’ll be on new meds soon, in the mean time try not to stress so much… I get it, easier said then done..
you’ll be ok, you might not believe it right this second, but you will be ok!
I've never been on meds
I understand, it’s a different world you’ll be stepping into.. it’s gonna be scary, buttttttt you’ll be ok.. you have to believe it though; one step at a time..
Sound advice you have spoken. Well done!
I am feeling your fear but also your faith and courage of the unknown. Lesions on brain can identify but take ONE step at a time and always know that MS SOCIETY can help with professional specialists that can verify what steps you are doing right now. PAUSE and get a path where ALL test are given and results are EXPLAINED. PATIENCE with yourself. ONE STEP AT A TIME. HEARTFELT WITH YOU. LOVE ❤️
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