diagnosed today: Yesterday I has an MRI of... - My MSAA Community

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diagnosed today

Ihatethispart profile image
29 Replies

Yesterday I has an MRI of my brain as they've been trying to find a reason why my left leg doesn't function properly. Today I had a consultation with a neurologist where I was told I have primary progressive ms. This is still new to me so I'm honestly still a bit overwhelmed I suppose. Sometimes an answer only leads to questions, this would be one of those times. The biggest question I have at the moment is what's next?

29 Replies
kycmary profile image

That is the biggest question we all have. Sorry you have had to join our club but this is the best place you can ask all types of questions vent when necessary we all care about each other & we understand that nobody else does I have been dealing with MS for almost 29 years, I have Remitting relapsing MS, welcome & we love you believe it or not! Mary

Helpmeup profile image

Being overwhelmed is totally understandable. As far as what's next, I would say do some research. This site is a good start, as we are all in the same boat and you can ask us anything. There is a lot of M.S. first hand experience here. I would also suggest reading as much as you can, from reputable sources. There are plenty of great M.S. organizations, lots of informative videos on various sites, and you can check the information from many M.S. treatment centers' web sites. Knowledge is power, the more you know, the better prepared you'll be when you follow up with your doctor. You are not alone on this journey.

Diva1976 profile image

Continue to try and keep moving. My left leg with having primary progressive MS has hindered my movement a lot. I still try to keep moving! What’s next is deciding rather you want to be on Ocrevus or if you choose not to. Whatever you decide, it’s totally up to you! Advocate for your health! Don’t assume everything is MS, now that you know you have it.

DM0329 profile image

Welcome to MSAA's Chat at HealthUnlocked! I'm sorry that you're part of our group now too, but, it's a wonderful, supportive community, which I stumbled upon a few years ago.

Getting an MS diagnosis is extremely overwhelming. Multiple Sclerosis: what is it, what can I do, what medications, etc. Knowledge is power: seek out information everwhere you can. MSAA is a great starting point. Reach out to the National Multiple Sclerosis Society too.

FWIW, I was dx way back in 1994 (at the age of 25). I had no idea of what MS was or what it all meant. But, I do know that back then there weren't any treatments available, and Betaseron (the very first MS tx) was dispensed via a lottery in the USA.

My diagnosing neurologist told me that "young women tend to do very well with MS" and for me "to live my life" and "stay positive." He did recommend a book for me to read, as I asked him if he could point me in "the right direction" as I was floored.

Well, three years later, I had vision problems, so I went back to the neurologist. He did a follow-up MRI three years later and compared it to the original scan from 1994. There was "substantial silent progression" and he told me "I was LUCKY THREE TIMES." Also, he told me to start Avonex therapy as soon as possible.

What? Well, my head was spinning again, I hate needles and how in the world am I going to give myself weekly intra-muscular injections? Yeah, well, you do what you have to do. Somehow, I had managed to give myself weekly pokes for twenty five years.

MS was a wake up call for me. I finished my BS and went on to earn my MEd. But, fatigue and cognitive dysfunction eventually led me to early retirement at the age of 45. But, I still look so good. LOL As you know, MS can be an invisible disability.

Well, just last year, I swiched to Aubagio (a once a day pill) as I was done with the injections. I just started menopause, and at the age of 55 I wanted an easier treatment. And with Covid, I felt this was my best option as Avonex had slowed my progression for twenty five years.

I hope my story gives you some inspiration. No one has a crystal ball. Do your research, find a treatment, a second treatment, if necessary, etc. Today there are options!

And, come and vent and chat and join our little group. It's a great place. MSAA has helped me greatly, too.

Stay Strong and Be Well! 🙂🙏👍

Hest19 profile image

Already so many good replies here; but your feelings are absolutely normal. And as has been said the more you can learn about your options with meds the better prepared you will be to make those decisions. For me, finding the BEST neurologist is KEY. Find one that looks at you individually and takes time to listen to you. This site is an awesome place to learn experience from others in similar situation, and all will do what they can to help you make your best decisions. Life never stays the same for anyone in this world, we reach out and help each other…. Hugs and prayers to you; hang in there. Keep sharing; there are many support groups available.



ms23 profile image

Hello and welcome, You’ve received wonderful advice, so I will just add to be sure your neurologist specializes in MS. You want someone on your side that sees many patients and is focused on MS. All the very best to you!

Hest19 profile image

Hi again. A woman I know recently diagnosed with primary progressive (2019) said although she knows little, her best advice is to try and remain as active as possible, keep as many social contacts as you can, avoid the news, and look for the positive! I know most of this was already covered by the other replies but please know that you are so not alone; and answers will come…. No 2 cases are exactly alike so we all move forward one step at time. Hugs

ahrogers profile image

I also have PPMS. There are some clinical trials available as well as a few Disease Modifying Treatments (DMTs). I would get on a DMT asap to help slow down accumulation of new lesions. More lesions can lead to more disability later. Exercise to the best of your ability. My neurologist told me why it is so important. They found it gets your body to try to repair the lost myelin. It lays down some myelin but it is not an organized perfect replacement. However, it does still help with nerve conduction somewhat. It may also reduce atrophy from scarring down in the areas of myelin loss later.I feel some of my current disability is from that scarring down leading to some atrophy in my spinal cord.

The other things to do are to keep your general health optimal. Don't smoke, drink alcohol in moderation and eat a healthy diet. They should be checking your vitamin D level too. Most neurologist recommend it being on the high side of normal so you may need a supplement.

Welcome to our group. You can search topics here too such as PPMS, names of DMTs such as Ocrevus, etc.

palomino27 profile image

Since your a male, copaxone is an option too. And yes, vitamin D3 level is super important MS especially this time of the year. If I'm under 40,it's an automatic MS flares....

mrsmike9 profile image

A ton of good stuff already written. All I will add is don't be upset if you have to try different meds until you find "the one". I had bad reactions to my 1st two and it was number three that has been for me.

hopeandgrace profile image

I have PPMS as well. Lots of good advice already here. Read reputable resources. Diet. DMT. Exercise!!! I would add on- create a journal, paper or digital or get an app to keep track of symptoms. Surprisingly, not every single thing will progressively “stay gone” once you lose it. If applicable, look into specific resources from your state about disability benefits and such. Ask for copies of your MRI results so you can take it with you if you need to switch providers. Advocate for yourself and refuse to have so-so care or doctors who don’t listen.

And most of all, stay hopeful! My faith keeps me going. I have cried out to Jesus and even though I am not yet healed I have peace. Hope you have folks in your life who can support you and help you through the rough times to come. You definitely have a family here online ready to listen and try to help as well. FWIW, lifting up a prayer for you.

RTR1 profile image

3 months ago, I was in the same situation except my issue is my right leg. I have been having issues with my right foot dragging when I get tired from physical activity (foot drop). I finally got an MRI and I have a lesion on the right side of my spine as well as spots on my brain so the diagnosis was MS. I am 55. My neurologist said that he can't call it PPMS quite yet, but I am positive that it is as I have never had any remittance of my symptoms, just a slow progression of my foot drop getting worse and worse.

I had a 5-day steroid infusion immediately and it did not help with any of my symptoms. I have finally received insurance approval and scheduled my first Ocrevus infusion in Feb. From all my research it appears to be the best and only option for me. Everything that I have read says to treat with DMT asap to slow the progression. I have been reading very positive reviews of Ocrevus.

I stopped drinking alcohol except for a one-day-a-week "date night" with my husband (2 glasses of red wine). I eat very healthily already but I really ramped it up to make sure that I am eating more than the recommended daily servings of fruits and veggies. I am a Pescatarian so I already don't eat any meat or chicken, just fish occasionally.

My vitamin D levels were low a few years ago and until I did my research, I didn't realize that it was tied to my MS. I take a vitamin D supplement, as well as a multivitamin, fish oil supplement, red yeast rice (for my cholesterol), and glucosamine supplement. I also started taking Zoloft as I have had past issues with some depression and I respond very well to Zoloft. When I was first diagnosed, I was afraid that my mental health would suffer so I am being proactive. So far so good as I have been staying very positive.

I lost 10 lbs and trying to lose 5 more to be at optimum weight for my height and bone structure. I also have started exercising 4 days a week, riding an exercise bike, doing yoga, and lifting weights. I am already getting stronger....it will help a lot. Don't stop moving!!

I use walking sticks when I know that I will be walking further than just a trip to the grocery store. I also ordered some canes but so far I really don't need them, the walking sticks help more to keep me from tripping with my foot drop when I become tired. I also purchased an AFO from Amazon (it hooks to my tennis shoe and around my calf to help keep my right foot more stable and stop the "drop").

Make sure that you have a good neurologist and that he or she specializes in MS. I am still searching for mine. If you need PT to have them refer you so that you can start doing exercises to help with your balance and strength.

I journal my symptoms daily. I also take my journal to my neurologist visits with my questions in writing. My husband attends those appointments with me so that I have a backup in case I miss something.

I am still a newbie to MS just like you. I am sharing all that I have learned so far. You will hear over and over again that everyone's journey is different, which is true, but we all should share our stories because there are also some similarities. If I share some info with you that helps then you can share it down the road with someone else. This group is great and a lifesaver for me. I was lost until I started posting questions here and getting real-world answers. Please reach out to me anytime. Good luck and please keep sharing!!

Cutefreckles72 profile image

Hi welcome to the group. I am sorry you are going through this. I have PPMS (Primary Progressive MS) and it can be overwhelming. You will have good and bad days. Do some research on PPMS and learn about the different meds and how MS affects your body. I was diagnosed four years ago, I started off using a cane to walk with now I am using an electric scooter to move around with. I know that MS is not curable yet and I have accepted that. I keep moving. Hang in there and you will be ok. 👍🙏🏾

leking1 profile image

Welcome! I had the same reaction over 42 years ago! My reaction was to learn everything I could about Multiple Sclerosis. I worked at a college, so my first call was to the head librarian, who was also a good friend. He knew I was an avid reader, so he loaded me down, and I began learning. Over the past 40 years, I have learned that nobody knew much about MS then, including the Neurologists. There were No meds, and my Dx was RRMS, so I spent the first year or so, relapsing, when they would put me in the hospital for 4 or 5 days, and when I started to improve, I would be sent back home until the next relapse. All these years later, I still don't know what is next, but I have learned that I can handle it, whatever it is. I have Secondary Progressive MS now, and I know a lot more about MS than I did when I began this journey. Stay strong. Stay positive. Stay moving. You will be OK!

Peruzzot profile image

Welcome to the group.

Xvettech profile image

we keep fighting!

I am sorry for everyone going through this - yes it more than sucks. But I have come to the realization that we were picked to have this terrible disease because we are strong! A weak person could never deal with this.

Tazmanian profile image

Welcome to the group, sorry you're here

Mollyabigail profile image

Hi, Ihatethispart, and welcome! A new diagnosis is overwhelming. We have all been there. Be kind to yourself. I was diagnosed 2 days before Christmas a few years ago. Not a holly jolly Christmas that year! I tell all new people - I learned a LOT from Dr. Aaron Boster's YouTube videos. If you are rural, as I am, and have NO ONE to turn to, check out some of his videos. He has answered many questions for me. Bless his heart! I would drink his bath water.

There's a lot of wisdom here too. I learn something every day from these guys. Also, check out Isaiah 41:10. God's got this. I'm going right now to pray for all the folks with a new diagnosis. It's a tough time, but it gets better.

And buy a shower chair before you bust your behind in the shower. Chances are - it already has a crack in it. 😎 Life goes on, friend - just differently.

jackiesj profile image

My heart goes out to you. you will find wonderful people here to help on your journey. Im in and out as health alows. one step at a time.....Each MS ex[erience is different but a good listening doc or friends here or there are priceless. welcome.

starlight5 profile image

Welcome. After diagnosis I found a neurologist that specializes in ms for a second opinion. Then lots of reading from reputable sites to educate myself about ms, treatments, etc before making any major decisions.

MarkUpnorth profile image

Welcome to M.S. Gifts Recipients Club! Everyone gets a different set of "gifts" from M.S., but we learn to go with it. I've had RRMS for 25+ really long years now. Been there, done that. Spent a few years in the cog fog so thick I call them my comatose years. Cut thru the fog be fasting and going on a juiced veggies with fruit diet to ward off the "fog". Since there moved through various progressions to what I do now, mostly veggies, with small portions of lean meat, fish, or seafood. And most importantly, avoid prepared foods with all the "chemicals, additives,..." Those things you can't even pronounce, more less understand, without lots of research, or you just happen to be a food engineer, as used by corporate xyz food companies. So unless you make it from scratch, yourself, good luck. But how hard is one of so many easy dinner plate sized salads with every meal?

Anyway, I've had so many relapses over the years, picking up lots of M.S. gifts that just won't go away. They're not so good keepers. BUT, all this healthy eating, and on no meds anymore after doing the whole DMT thing for many years, till my neurologists said I could no longer do them any more. Let's see, my last year and a half I spent every week going thru the fever with shades, aches, fatigue, and...3 times a week, with about a 4 hour break 3x a week. You get used to it.? BUT, no relapses in over 5 years now! And the Neuro tells me I've joined the Done That group, of I should no longer have anything, except maybe all those gifts that you can't give back. But I'm working on those too. And have returned a few. Not a lot, but a few.

Sandydemop profile image

All good advice so far. i can only add exercise like your life depends on it because it does. Keep coming back.

twooldcrows profile image

welcome to our group of all ages and levels of MS ....

BlanketTime1 profile image

just wanted to say welcome. glad you've got your diagnosis and hope the neuro (and the whizzes on here) will help you as you learn.🤗

cljones profile image

I was diagnosed in 2014 with MS. When I asked my doctor what kind I had he said oh it doesn't matter it's all MS. Later I learned that if they put down ppms the insurances will not pay for your dmts unless they are specifically for ppms. At that time there were no meds for that. But recently my doctor told me that I have a Progressive form of MS. Still not being specific. But she put me on mayzent. It covers relapsing as well as spms. So my insurance covers it and what it doesn't cover I get assistance through Novartis. I also have trouble with the left leg and drop foot. One thing my doctor prescribes for me is physical therapy. It helps tremendously. I go twice a week and my physical therapist are wonderful. They know how to turn in the paperwork to where I get to go all year long instead of just 26 visits that Medicare pays for. And I've not had to pay for any of them except my co-pay at the beginning of the year. Definitely have your doctor prescribe physical therapy. I agree with all of them you must keep moving once you stop you can't.

Fancy59 profile image

Ihatethispart, Hello and welcome to our family in this chat room from Fancy 59. The 1st thing I would like you to do is take a deep breath. I know your head has to be spinning round and round. Just remember you're surrounded by friends here who have walked a similar path to your own. I wish I could tell you what you would face next but I don't have a crystal ball that works very much lately or I would use it for everyone in this chat room. All I can tell you is that everyone's MS follows its own unique path. Although we are all on parallel paths we reach different milestones at different times. So never regret reaching out for help because we will be there walking someplace along side of you. When you fall down we will reach over to you and pick you up. We can help you through the rough spots and answer questions as you find you have needs for answers. We can cry with you, we can support you, and we can laugh with you whenever you need it just let us know! Remember knowledge is power and together we are stronger! Fancy59.

Graip76 profile image

I went through what you’re going through two years ago. The advice I would now give to you is please don’t go to the internet and read about PPMS. A lot of what’s there is outdated and negative. My doctor told me that some people progress rapidly, some don’t, and some get even better. I was advised to be careful what I read and to only read peer reviewed articles that are current. I did go through the grieving process for awhile but then finally realized that acceptance doesn’t mean giving up hope!! Blessings 🙏🙏

Sagesewer profile image

I do agree with Graip, a lot of info out there is outdated. Your Neuro is the better choice to get info from. Experiences and similar occurrences are great to be discussed with fellow MSers.

Don’t be overwhelmed. Easier said than done. I remember hearing song lyrics that said , “Your life is not falling apart, it is falling into place.”

Be strong. Prayers and blessings.😊

greaterexp profile image

I'm sorry for your diagnosis, but knowing what's going on is the most important first step in getting treatment.

I know it seems like you're drinking from a fire hose with so much information to take in. You and your doctor can decide the best treatment based on your needs. This chart can help you compare:


This course is very helpful:


Many of us have gone through this excellent course. There is one coming up in March.

I found this group to be so helpful when I finally got a diagnosis about 5 or 6 years ago. MyMSAA has numerous resources, too.


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