Hi all newly diagnosed here. 4 lesions in brain and they say it's ms. I'm not ready to start any medication yet it's what my guts says. I've seen 2 neurologists and haven't felt comfortable and they're pushing the medicine. I'm 41 and suffered worh vestibular migraine for 10 years. I was vertigo free for 10 years fGot an episode it felt different so i pushed for an mri showed the lesions and the journey began. If I hadn't had the episode I wouldn't have known. I don't know what to do with my diagnosis going forward. Last night my thighs woke me burning and aching punching them give me relief and i think oh no are my lesions growing? What to eat I fear, is this pain in my leg a symptom? 9 don't know what to do woth my diagnosis, I've read so much I've over wheeled myself and I feel so scared. I've had a lifetime of abuse and stress.forst removal of thyroid, then gallbladder last year now this. I wish my life was different but believe my family abuse gave me all these problems. I just feel my life is over and scared now. Scared to live. Don't know how to move forward with getting and feeling better. Pls help a gal out. Love from Australia 🇦🇺 ❤️
I feel so lost.: Hi all newly diagnosed... - My MSAA Community
I feel so lost.
Welcome! Hearing the diagnosis and then about medications is a lot to process, you're not alone! What you described about your family sounds like a mess and throwing a MS diagnosis in the mix can't be healthy for your mind. I would see if there is a therapist to talk to, maybe someone experienced in both MS and trauma. I would definitely take a break from learning about MS and do something fun or normal!
I'm really sorry about your diagnosis. As far as MS goes, now that you're diagnosed you can be treated. There are many good therapies to help slow progression and decrease the number of relapses you have. Sometimes learning about that makes people feel empowered, but it's really normal to be scared. This site is a really good source of support to help you cope. I'm also really sorry that you've had to deal with abuse. It's very common for people who are under stress all the time to struggle with depression and/or anxiety. I think that Kdali's suggestion of seeing a trauma counselor is a good idea. I have seen therapists and psychiatrists for anxiety and depression, and I don't think there's anything wrong with asking for help when you need it. We all need help at one time or another.
Please come back often to let us know how you're doing, ask questions, or just have a laugh. Take care of yourself. 😊
I am saddened to hear of all the things going on with your health, Contra21 . May I suggest that you visit mymsaa.org for information on all the therapies currently available. I look forward to hearing more from you. 🤗
I'm scared to start medicine... what if it didn't work.. I don't want to keep changing , hate taking medicine
I hate taking medicine as well, Contra21 , and what if it doesn’t work? I have been on 3 different ‘ms’ medications and I don’t want to use any more but it sometimes is necessary. I trust my neurologist on these matters. A good working relationship with your medical professional is far more valuable than being on the ‘best’ meds. 🤗
Sadly I don't have one. Do you mind me asking why you don't want to use anymore?
I am just wondering if I can get by without any more medication, Contra21 , that’s all. My neurologist will let me know when it’s time.
There is a saying among neurologists, which is "Time is brain". To protect your brain and limit disability, it helps a great deal to get on a disease modifying therapy, or DMT, promptly. I'm pretty sure most people here don't enjoy taking medication, I know I don't. But it sure beats the alternative. Also, the only way to find out if a medication works is to try it. Twenty years ago, there were hardly any medications for MS, and they all had to be injected at home and had unpleasant side effects. Now there are many MS meds available that work better and are easier to tolerate.
If I was you, I'd go with the medication. It might be scary at first, but once you've been on it a month or so, it'll be like 2nd nature 🫂My mum had a parathyroidectomy, and also a procedure to remove part if the muscles behind her eyes because she had Graves Disease (over-active thyroid).
I was doing my nursing degree when I got my clinically definite diagnosis of RRMS, so injecting myself was no bother for me. When I was in hospital back in '21, I did my injections and student doctors/nurses would watch, asking questions because they hadn't come across that medication before! It felt extremely good to hopefully inspire them to become MS specialists.
Please don't give up 🫂 they're looking out for you and your wellbeing, no matter if it's physical or mental.
Was that copaxone? Do you ask take it? What diet to eat, I'm being scared to eat
It was copaxone. I didn't ask to take it, I just had it all delivered, automatically, just after I got my letter telling me that it was confirmed.I haven't changed my diet, but to be fair I never really had breakfast or lunch, and because I worked for a KFC I'd get free a meal per shift. Still don't really eat breakfast or lunch, unless I'm taking steroid meds with my morning meds.
Don't be scared to eat 🫂 your body still needs all the stuff that you get from food, and it'd lead to deficiencies if you don't get them, and probably make your health A LOT worse 😟
I've read so much on diet, they say do wahls diet, do swank diet. No dairyz no sugar .. Some ppl say meds made them.worse
I've seen those too, but I don't follow them. I still have a cup of decaf tea with 2 sugars and milk every morning to wake me up, and more during the day. The only thing I've changed is not drinking stuff with caffeine or citrus fruits, but that's to help me with my bladder stuff. Meds don't make it worse, you just have to find one that works for you 🫂 I got switched onto ocrevus after that hospital stay, and it's definitely working! But I think their reasoning is that my relapse-remitting MS is aggressive, and so I've had to move onto it 🤔 makes a whole difference! With the pre-meds of steroids and then to the ocrevus, sitting down for a few hours with nurses and healthcare assistants being at your beck and call is like being royalty 😅 they did try me on tysabri, but because I've got a high titre of JCV antibodies, I'm a risk of developing PML when on it for a long period of time. I just had the 1 dose of tysabri back in '20. I tried kesimpta last year, but I didn't really like using it, so back on ocrevus I went.
Sorry to hear you have MS but it isn't the end of your world. It is a different world but not the end. Diet is important even if you don't have MS. You just need to eat a healthy diet rather than a lot of fast food, processed foods & junk food. As for the meds. The sooner you can get on one the better. You may have to try a couple different ones at first. MS is different for everyone, so what works for me may not work for you. I was diagnosed 19 years ago. I had to make some changes in how I do things but it hasn't stopped me from living life. I started out with the mental thought that each day is a new adventure. It can be hard to stay positive especially in the beginning but it is important. Stress can & will make MS worse not to mention all the other things stress dies to your body. So look in the mirror, take a deep breath & say "You can do this." Do it everyday & before you know it you will be living life with MS & a smile. ❤
Thankyou so much for replying. I think what of my lesions grow, did yours? How often do you have to get scans, I'm scared of my brain getting worse . What medicine are you on, are theside effects bad?
When I was diagnosed, I had 9 lesions & 4 active & 5 lesions on my spine. Yes they can get worse. Because i started on meds when i was first diagnosed, my lesions have not gotten worse.I started out with Copaxone then later changed to Techfedera then Over us & now I'm on Vumerity. Copaxone worked ok but I got tired of the injections. Techfedera didn't work for me, I kept having relapses. Ocrevus worked great fir 2 years but then it stopped working. Vumerity seems to be doing very well for me. My MS is in remission & has been for 2 years now. I never really had any side effects b from the meds. With Octavia I had a hard time sleeping the day of the infusion due to the steroids. With Techfedera I would get an upset stomach if I didn't take it with food & the same with Vumerity. Don't let the side effects listed stop you from taking the meds. If you read the side effects of aspirin you will find they are just as bad. But the drug company has to list them because one or more persons in the trials experienced them.
My neurologist didn't mention anything about active lesion, I don't know what s relapse is. He suggests tecfedera. What ms in remission? Only symptom I had was vertigo and at of last burning painful thighs inside of that's ms related. I've seen 2 neurologist and feel I'm just being handed the medicine. Hope so you know its stopped working? What's a relapse? How do you know it's active,?
An active lesion means that the myelin, the tissue that covers the nerves (like an electric wire) are actively being destroyed. On an MRI they glow bright. Non active lesions show as a scar on the image. A relapse is when you have been doing really well with no new symptoms & then all of a sudden you are having new symptoms. MS remission is when you don't have any MS symptoms. I haven't had any MS symptoms for 2 years so the MS is in remission. Techfedera is a good MS drug. At the time I was taking it I was having a lot of new symptoms. The Vumerity that I'm taking now is similar to Techfedera. You don't have to take any of the meds for MS. There are several people on this sight that don't. They try to manage with a good diet, little stress, & some exercise. MS is a progressive disease & the meds really do help to slow & sometimes stop the MS from progressing, (or more lesions developing). I hope this helps.
Since you are in Australia, check out MS information from the University of Tasmania. Every bit of information you find there is accurate. Most of us understand your wariness of starting meds, but the most recent advice is to find one that fits your needs and preferences. There are charts that list all those that are available; there's no need to rush a decision, so take time to read them when you are calm. Ask questions here because forum participants are familiar or have personal experience with many of them. For many of us, this forum has become a family, supportive, empathetic, helpful. Come back often. Someone will always be here to listen to your progress. Keep us posted!
I agree with goatgal 100%. This is a very welcoming and knowledgeable community. In addition to the site she mentioned, you can also check out Dr. Aaron Boster on youtube for a series of well regarded videos on every aspect of MS. Included are videos discussing the various treatments and his recommendations. I suspect with your burden of lesions you might want to consider one of his top 3, but of course you should discuss with your MS specialist. As far as diet, just make healthy choices and get all your nutrients. No diet has been proven to help MS so just listen to your body. Excess salt and sugar isn’t good for anyone. Do you have a MS center near you? Most offer not only neurologists that specialize in MS, but also physical therapy (one of the best things you can do) and counseling. Please come back often and let us know how you are doing. A diagnosis of MS is a lot to deal with, but you are in control now and you will adjust!
The neurologist is so vague. I see ppl say active lesions I don't know that terminology All he said was the 1st time 2 lesions, 3 months later there 5 but they could have neem there before. But take medicine. This was in march amd I have another scan in June but waiting until then to start meds as he makes me doubtful. I got a positive jcv I saod what's that he said not important just take the meds as I read it is important. He called and saod all ot means is you can't take certain meds. I just feel so lost, confused.
what you’re experiencing is normal for any diagnosis of a life-long disease. Take a deep breath.
As others have said, no diet has been proven to be the perfect one for MS. Eat healthy. It’s ok to experiment a bit, too. If you find you feel better eating less of something, go for it. But don’t make eating an additional stress in your life.
As far as meds go, do your research. I just reached my 24 year mark of my diagnosis. I’m 45. I give a lot of credit to where I am with my MS to starting meds early. I did one year if avonex and I’ve been on Rebif ever since. It’s not a newer drug, but it has worked for me.
Good luck in your journey!! Keep trying!! And exercise. That has made the biggest difference in my journey.
Hang in there I have been dealing with MS for 30 years now. Find the right medication and start asap that’s what I did. I haven’t done any specific diet changes but I do watch fried food and processed foods, other than that I keep going. I’m still driving and have a drop foot brace and deal with effects of MS but have learned how to manage it👍🏼 Fear and anxiety will increase symptoms so stay positive and move forward. Take care 👍🏼🙏😉
First of all, relax and take a deep breath. Do you have access to a library? Empower yourself with knowledge. Who made the diagnose? What tests did they run?
I saw 2 neurologist. Not a fan of either. Both handed me brochures and did pick a drug. They did evoke eye test, and mri and jcv blood test which came back high. He responded that means you can't take certain medications. All vague
Contra21 welcome to the group, sorry for the reason. Starting a medication is key to keeping your MS in remission so that it doesn't progress. There are so many medications out there now compared to when I was diagnosed in 2006. I started on Copaxone injections daily, then to the 3xs a week injections. I was tired of injections so I asked my Neuro to switch to a pill. I have been on Tecfidera for 5 years now and doing well.
Your Neuro may suggest a med for you to start on or give you options of the ones they think would work best for you. Here is a link to the different Disease Modifying Therapies on the National MS Society site: nationalmssociety.org/manag...
Keep us updated on how you are doing and which medication you chose if you decide to go on a med.
It can be really scary to hear you have MS. For many here, including me, it was a relief because we just wanted to know what was wrong.
My own belief is to get on a med as soon as possible. It will help stop the progression. Just know that you may have to try several before you find the one that works for you, so don't give up! I had reactions with the first two I tried my number three has been just fine for years.
Which ones gave you reactions?
Techfidera and Copaxone. I was glad about Copaxone as it was hard to give myself shots!
Sorry about all you're going through you should listen to your neurologist and start a dmt as soon as possible
From all that I'm seeing above, you need to shop around for a new neurologist. I went through several before I found one who was actually willing to help me. In the meantime, read and learn everything you can about MS from legitimate websites and forums. Stay away from Dr. Google and miracle cures. Look at the sites published by actual MS organizations.
Modern science has created some wonderful drugs for the treatment of MS, but they all do come with potentially-dangerous side effects. They also have different levels of efficacy. Do your research and see which one sounds the best for your situation, check with your insurance company, and then discuss it with a doctor. Since it doesn't sound like your neuro is doing much for you, could you see if your family doctor can help?
Most of all, slow down and breathe. You're the same person you were before the diagnosis. It's just that now you know why you've been having weird problems. When you have active lesions, that just means that your MS is acting up. It'll settle down after a while, and you'll develop a new normal. How often you get them and how many you get varies for each one of us, but those are called relapses. Each relapse leaves you a little worse than before, but once it passes you'll discover that many of your issues were temporary.
How do you know a lesion is active?
Just from the MRI. They can tell at that time whether the lesions are new (active) or old (inactive), and that's just a measurement of the progression of your MS. Six months in between MRI's is pretty normal, I think, when you're first diagnosed. As things stabilize, you'll go to once a year and then possibly once every couple years, depending on how you've progressed.
Don't stress about the lesions themselves. Generally speaking, if you develop new symptoms, you probably have new lesions. If you're just dealing with the "new normal", then you're considered stable.
New symptom I have is sching in my thighs, pain, heavy legs.
That's actually pretty normal. Treat them as best you can. I've found that Icy-Hot works well for me, and sometimes elevating my legs or using an electric heating pad helps a bit. It sounds like you're in the midst of a relapse right now. Let your neuro know if this is something that has shown up since you last saw him. High-dose steroids come with their own problems, but they can be used to halt the relapse. If he hasn't offered them, you might want to ask about a dose of Solu-Medrol.
I pray this isn't a relapse I'm yet to experience one. I'm newly diagnosed. How can I get worse in 3 months. I'm so scared
It's probably just part of the whole thing, an extension of what you've been dealing with. Stress can cause a worsening of problems, along with weather extremes. Try keeping a diary recording your symptoms and when they occur. Some things may be worse as soon as you roll out of bed, then disappear as the day goes on. Some may only show up when you're tired at the end of the day or have been physically active. For me, just being outside on a hot day will cause a lot of issues that go away once I cool down. The big problem with MS is that it's different for each of us, and you don't know yet what your "normal" will be.
Agree with NorasMom 100%: it really sounds like you need a new neurologist, a specialist in MS who will guide you, not just hand you brochures. I do think you need to start on medication since you have been getting more lesions. Your current doctor is correct in that being JCV positive means you cannot take certain drugs. I hope you can find a neuro that you can relate to and who will answer your questions. This is a long road and you need someone on your team. I know srna.org has a physician locator for MS specialists, and I would imagine the MS society does as well.
As an aside, it will help speed things up if you start gathering all your records to bring to a new doctor (lab reports, MRI disks, MRI reports, evoked potential results, etc.).
Lots of great advice here. You remind me of me 39 years ago. It is normal to be terrified and to notice every little twinge in your body. I went to a movie and when it was over I thought my neck had stopped working. Turns out it just felt weird from leaning back in the chair. Your symptoms are real. The ones that stick around will sort of become more in the background. I have one piece of advice. Write down all your questions. Organize them and take them to your neurologist and ask them all. A good neurologist, in my view, takes the time to answer all your questions. I really feel for you.
How did you overcome the fear, you on medicine?
Time took care of the fear. There wasn't much information in 1985 and no drugs. I eventually was on Avonex for about 15 years and stopped that 1 year ago. This is because of my age and my neurologist's belief that exercise was doing more than the drug at this point. You are too young to be concerned about that decision, which people my age wrestle with. I wish there had been a drug at the onset of my diagnosis. Best info says the sooner one is started, the better the long term outcome.
Hi Contra21. It is understandable that you are feeling very overwhelmed right now. There is so much information out there, it can be confusing. Like many others said, it is very important to find a good neurologist that you can count on and develop a good relationship with. Take your time researching the different therapies, and choose one that you feel ok with. These therapies all work differently, and will affect each person differently. Do not be discouraged if it takes a few different drugs before you find the right fit. All of them come with side effects, but the one you choose may have very tolerable side effects and work well for you. I took Tecfidera for 8 years and had no side effects. I only stopped it because of changes in insurance coverage. Like you, I was overwhelmed at first, but little by little, I made my adjustments and got on with it. I have been living with M.S. for close to 30 years now.
I also went to a great psychologist early on in my journey, and she made a huge difference in how I saw things. She gave me a lot of great advice for living with a chronic illness. kdali made a good suggestion. Therapy can work wonders.
Wishing you the best on your journey. Please keep us posted on your progress. 😊
Hi Contra21, I’m sending you hugs and a shoulder to lean on. Take a deep breath and breathe, try to let your shoulders relax as you exhale and take a deep breath again, exhale.
Yes, this can be a very scary experience at first but you found the perfect place to vent and ask questions. In reading over the comments, I think you have all your questions answered, but if not or you have more, please let me know and we’ll see what we can do.
I was diagnosed in 2008 after many years of weird symptoms. My sister had been diagnosed with MS years before (when there were no DMT’s) and she kept telling me I had it too. I disagreed with her but she turned out to be right. There were only 3 drugs available then and I chose Copaxone because it had the shortest needle and my sister was on it.
At the time I was terrified of injections but it turned out to be no big deal. It took a couple of years to dial in the rest of my meds and I did have several relapses. However, since the only other DMTs had BIG needles I chose to stick with Copaxone. By the time other DMTs came out, I was stable on Copaxone and still am.
As you are learning, no one has the same MS but some things are universal. If you smoke, quit. Eat a balanced diet, try not to stress, you will probably get strange symptoms and heat and humidity might make you feel worse. I, personally, would get on a DMT as soon as you feel comfortable.
I agree with the suggestion that you find a neurologist that can take the time you need to feel comfortable. When you make the appointment let them know that you have a lot of questions and concerns. If it’s like here, they schedule a patient every 15 minutes so I ask for a long appointment so the doctor isn’t rushed.
Best wishes and let us know how you are doing. 🤗🙏😎
There is a wonderful MS doctor who does videos for MS patients on YouTube. He is very passionate about helping people with MS learn what they need to know to have a good life . He makes videos every chance he gets, so some of them are in odd places. This one appears to be on a construction site, but don't let that worry you. He's the real deal, and his YouTube videos are very helpful. This one is for those recently diagnosed.
The best thing for you to do at this time is to contact the MS organisation in your state. You have said you are in Australia and you can find the relevant MS body for your state on this webpage - just down a bit from the top.
msaustralia.org.au/about-us...
Your state MS organisation can help you with information and practical support, and connection to other people with MS via physical meet-ups and online support groups. They have MS nurses who can help you work through decisions about medications, and give you plenty of other information about things such as symptoms, what all the terminology means, how to tell if you are having a relapse or not, what sort of diet to eat/avoid (basically avoid all the special "MS diets" you find online).
Each of the state based organisations is separate from the others, but one thing I can tell you is that the one for the south-east of Australia (covering NSW, ACT, Vic & Tas) has excellent online resources such as on-demand webinars about all sorts of stuff to do with MS. Note that you do not have to be in any particular state to access any online resources with MS Australia or its member organisations, the same as you can access the resources on MS websites in other countries.
Do be aware that this forum is populated mostly by Americans, so some of what you read here won't necessarily apply to you in Australia, especially in relation to subjects such as costs of drugs, and other general health system topics - e.g. if you're in the public health system in Aus you can't just go and find another neurologist on a different street corner.
You will get through this, and pretty much everyone feels overwhelmed at the start, but MS today is a very different disease to what it was even just 10 or 15 years ago as there have been so many new medications become available even in just that "short" time.
It is a difficult time for you, and information overload is very common when first diagnosed, especially when people dive headfirst into Google but have absolutely no idea of how to judge the quality or truth of what they find online. This is especially the situation with special so-called "MS diets" - so to get you started on that topic and ease some of your concerns about not knowing what to eat - here's three of really good fact and science based webinars which explain why so much of what is online is rubbish - that should help take some of the worry off your shoulders on one topic.
msplus.org.au/resources/nut...
The webinar on the link above is from MS Plus in SE Australia..
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