I just received my diagnosis of MS over the phone today. I don't see my neurologist till the end of the month, though I'm on the cancelation list. I just had the lumbar puncture Monday,and am stuck in bed, laying down because I have a spinal headache. I have no idea what to expect. I feel lost and confused. What can I expect? Any tips for a newbie to the diagnosis?
Just Diagnosed. : I just received my... - My MSAA Community
Just Diagnosed.
Written by
MSFlea
To view profiles and participate in discussions please or .
71 Replies
•
I'm so sorry that you were given a major diagnosis like MS over the phone, without any conversation about what it means, or what happens now. You have a serious disease, but we won't talk to you about it for three weeks?! Welcome to the group. Having MS is NOT the end of the world. Everyone is different because the damage can be in different places, but there are a lot of commonalities.
You didn't mention what symptoms led to your diagnosis, but you've probably had some troubling symptoms and have been worried about what was going on. Sometimes, it's just good to know what's happening to you. What happens now is that your doctor will probably want to put you on a DMT, or disease modifying treatment. These are to help prevent further relapses and reduce future disability. There are so many effective treatments available now, from pills, to injections you do at home, to infusions you get in an outpatient setting while nice nurses wait on you. Hopefully your doctor will recommend a few and let you make the final choice.
We are here to answer your questions, let you vent, or commiserate if you're discouraged. Please come here often and ask questions and let us know how you're doing.
Thank you so much for the welcome to the community. I am still trying to process the diagnosis, though I've been dealing with the symptoms for quite a while.
I've had a lot of symptoms, from my hand going numb, to debilitating fatigue, headaches, brain fog, unintentional weight loss, and dizziness. The dizziness was what got the MRI initially done and led to the lumbar puncture. Well, that and a memory test the neurologist did, that I did not do so great at. Are these symptoms permanent now? Or will the DMT help?
My DMT at the beginning (Avonex, which is an older drug and isn't prescribed as a first line treatment as often anymore because there are more effective drugs now) did help with the tingling in my legs, but not much in the way of other symptoms. Sometimes MS symptoms will come and go on their own. Some symptoms you may be stuck with, but there are drugs that can help with fatigue, tingling, and some of the other symptoms you mentioned. Here are some links. The last one lists all the medications used for various symptoms. Please remember as you read and look around on health unlocked that there are many symptoms you will read about that will most likely never happen to you. Today's meds are better than ever before and many people never progress to the point where they are disabled. Some people, after a period of time, make a decision not to use a DMT, which is a personal choice. I personally chose meds, and I don't regret it.
mymsaa.org/ms-information/n...
nationalmssociety.org/Sympt...
nationalmssociety.org/Treat...
My other advice is to pace yourself, try not to overdo it, and get a neurologist you can really trust. An MS specialist is a plus.
Thank you for the resources, I have them up on tabs to explore. And for the info. I'm understanding that MS is a very personal disease, different for everyone. I'm having a lot of brain fog and headaches at the moment. I will definitely be talking to my neurologist about DMT's.
You're very welcome. I remember all to well what it felt like to be diagnosed. Please post again and let us know how you're doing!
Sweet friend you are now never alone we all are here for you !
If you're still dealing with a headache several days after having the lumbar puncture, I'd let your doctor know. It happens, but not all that often, and it could be a cause for concern.
CatsandCars posted some good stuff. As time goes by, you'll learn which of your symptoms are always there, which only occur during specific seasons, and which ones happen when you overdo it. If you're currently having a lot of issues, it's possible that you're in the middle of an exacerbation or relapse. With those, you get new problems and a worsening of old ones, but things do slowly improve. Unfortunately, none of it ever really goes away.
Keep posting here and asking questions. There are many of us who've been dealing with this for decades, and life will still be good. You just might need to make some adaptations to what you do and how you do it.
Hey, MSFlea. I was diagnosed by phone too. Two days before Christmas in 2020. Not a holly jolly Christmas! Shook up? You bet! Crying? Nonstop! 1. Give yourself time to mourn the old you. It's a life changing thing, but not life ending.
2. Cling to Isaiah 41:10. It was written by God for you! (well, for the world, but claim it as yours).
3. Find Dr. Aaron Boster on YouTube and watch his videos for the newly diagnosed. He has taught me far more about how to live with MS than my rural neuro even "knows."
4. Don't smoke stuff. Practice healthy living - diet, exercise, plenty of rest. Start a disease modifying therapy (pills, injections, infusions). My neuro said, "I get to choose your medication." I was too weepy & ignorant to know I had choices! There are choices!
5. Check in here regularly! I am only 3 years in, but there are folks here who have dealt with M. S. for decades.
6. Dig deep & find your perseverance and faith. You and God can do this.
Prayers for you from rural Mississippi! ❤️
Thank you for the Bible verse! I’m gonna look it up now! ❤️🙏
Another "diagnosis dump" by phone? Geez, that is unconscionable. I'm so sorry that happened to you, Mollyabigail. I had a very nice neuro ophthalmologist break the news gently, in person, and a neurologist brother-in-law to take care of me at the time. I realize now how blessed I was. I hope you have a good doctor now, anyway, or that he's stopped dropping bad news on you like that.
I agree, I looked it up and found it to be very comforting. Thanks!
carolek572CommunityAmbassador
Welcome to this forum, MSFlea . You can go to mymsaa.org for a lot of information on ms. There is a plethora of information on this forum and many members who can help you. I would get a list of questions to ask the neurologist when I see them. I look forward to hearing more from you. That spinal headache will subside, just keep still, and stay in bed. 
Welcome to the chaos of our lives 🫂 would you be comfortable with sharing your symptoms on here, to probably get insights into how others have managed the symptoms? It's ok if you're not, but know you can always drop me a private message to help you cope. I don't have any links to information in how to manage it, but you can always Google your symptoms and DMTs 🤷♀️
My 1st symptom, that got me to see a neuro who told me he suspected a baby version of MS (clinically isolated syndrome), and then, when I reported other symptoms a year later, he had me go see him for a pinprick test and then an MRI, and he sent copaxone and a letter saying I have clinically definite RRMS 🙃 at least you got to speak to him, rather than being told through a letter 😅
I was on copaxone for 5ish years, to then become worse and needed to swap to an infused DMT. Was tried on tysabri, but because I'm JCV positive, they didn't feel safe having me go for another infusion of it. So, back on copaxone I went, until my neuro had enough evidence to get me on ocrevus! Imagine having to be in hospital, doing your copaxone with nurses and students watching and asking questions, then to get a call off your MS nurse telling you to stop your copaxone because you'll be needing to go on ocrevus, because you've got an aggressive form of RRMS 🤷♀️ I've tried kesimpta, but I'm not a fan of it, so I'm soon going back on ocrevus 😁 just got 1 more kesimpta to do, and I'll be starting ocrevus again in March 🙌🫶
For our new friend, JCV is a very common virus that most people have, but doesn't cause problems unless your immune system isn't working at full steam, such as when you are on a DMT. I believe this concern is unique to the drug Tysabri, though.
Edit: PML can be a concern with multiple drugs, not just Tysabri.
It is! 🤦♀️ I should have mentioned about that!
We can't remember everything! 😊
I don't suppose the letter was even on nice stationery, or anything?
No, it was typed up 🤷♀️ I get why, but getting a letter from him to tell me in clinically definite and starting copaxone, to then have an MS nurse call me up and tell me that I'm JCV positive and I've got an appointment with her to teach me how to do my injections. To be fair, I did get an appointment with my 1st lot, but because I didn't have the time and was trying to do my student nurse degree, I just injected myself without using the autoinjector. Thankfully, the housemates weren't bothered about my injections being in the student fridge, because they were student nurses themselves and knew I needed the medicine. But to have them delivered with no warning, and a housemate take the delivery because I was on placement that day, was a bit strange 🤷♀️ however, I had to drop out and go back home to my mum's, where she'd watch me and get worried if I had a post injection reaction (had one where I couldn't breathe properly and so I stripped off before going to the bathroom to throw up. Not to scare OP, but to make her aware of watching for changes in your normal behaviour.) 🫂 I've not had another reaction after I got taught how to properly inject myself.
I'm sorry that you found out that way. A lot of people (myself included) would have freaked out about having to give themselves injections without anyone breaking it to them beforehand.
I know that many people would have refused to give themselves injections, but I've always been an oddball 😅 I remember, back when I was YOUNG young, I watched a nurse give me a childhood vaccine in my left arm, under a mole that I've got on there. I've watched my mum getting her depo provera injections when I was with her when she had them. I've tried going and getting my nursing degree, but couldn't finish it because of MS and a mental breakdown. And now I love watching nurses take blood from me! 😅 I don't know why though. My husband regularly goes donating blood/plasma, but he doesn't like needles. I love discussing getting cannulas in me with nurses, telling them which veins are best at that time and doing the whole "tapping" to encourage a vien to pop up! I am so odd that I comment on husband's veins when I see them swell and be more accessible if he were to need to go and get cannulated for some reason 🤷♀️
Too funny! 😁
That’s called vein porn!! It is an actual thing.. 39+ years in healthcare 😝
Makes sense 😅 obviously couldn't complete my degree, but got to 2nd year, and I've still got the knowledge 👌
That knowledge will serve you well in life.. no one can ever take it away.. maybe at some point there would be a way for you to do some online classes to add to your knowledge… if that is something that would make you feel even more fulfilled.
😅 I wish my brain got that memo! My (f)ucked immune system caused me to have generalised seizures, and I liken them to a Blue Screen of Death 😬 it's like my brain needs to clear history, and when I have them, I can barely remember the day before, or what I was doing just before 😢 before I had generalised, I had just simple partials, courtesy of MS, and I remember having one at work at a KFC, doing the burger station, with the fry fryers at my back. I couldn't speak, I had a sense of dread, but I could still move my body and remember how to make the burgers. It's a good thing I didn't have generalised ones back then, otherwise I would have had a concussion and probably a bad burn 😬 so instead, I'm keeping our house clean, making t'other half brews in the morning when he wakes up and a few when he gets home from work, and sometimes cooking tea (evening meal) 🤷♀️ otherwise, I'm keeping myself busy with physio and medications. I want to be able to walk by myself again 😩
That sounds pretty rough, my friend! I pray that someday you will get past this seizures and walk independently, all that you want 😊🙏🏼😇
I don't mind sharing. I've had my hands and foot go numb, unintended weight loss, dizziness (this has been very debilitating, it's better than it was though), severe headaches, fatigue (doc already put me on something for the fatigue, but I'm not sure if it is helping or not. I'm crushed that I get overly fatigued and 'overdo it' so easily now), and brain fog, to name a few. How do I message you? I'm so new to this site, I don't know how to do much. But I would love to talk more.
I sent an email to Health Unlocked to see if I can figure out how to message someone. I saw a chat option in my profile section that looked like a paper airplane, but I don't want to steer you wrong. 😊
For a private chat, click on the person's name. It'll take you to their profile page, and there's a nice blue box that says "chat". Just click on it, and you'll be taken straight to a window where you can type your message.
Thanks, NorasMom! Awesome.😊
hi!
I noticed that dmts improved my symptoms a lot (not completely though) as compared to when i was not on something.
I'm definitely going to try DMTs. I want to see what we can do to get me feeling at least a little better. My hope is that I am in a flair? Is that what you call it? And that medicine will help me to feel better. 🙂
It could be a flair (flare?) but if you’ve never taken/done any disease modifying therapy then it could just be you needing something to get you started before establishing your baseline of function and how you feel. (My thoughts, not medical suggestions)
YOU will have fears and worries but your heart ❤️ will find healing soon-each day. Stay open and aware youhave support and resources to find your way. Be good 😊 to yourself. Trust and let yourself understand with questions and keep all results. The healthcare system can be complex. Try to stay calm, meditating if you can and pay attention to your body. Daily try to be honest as this process can take time. I record each day. Body-Mind-Spirit! You just Do Your Best! 🎶 A little.
Great advice!
Thank you! I actually got a month sub to Headspace and am giving meditation a try 🙂
Welcome. Sorry for how you found out but I am guessing you are somewhat relieved to know what is causing your symptoms. Great advice on here to keep your general health as good as possible; don't smoke, alcohol in moderation, healthy diet and exercise, exercise, exercise. Many DMTs to choose from. Nowadays they recommend coming out punching with the highly effective DMTs from the start, rather than starting with less effective and moving up when you relapse. They all have different potential side effects so go for one you feel comfortable with. Preventing new lesions limits disability down the road.
Most neurologists like vitamin D levels to be on the high side of normal; 50-60. I just learned the gummies aren't absorbed well so go with capsules if you need supplementation.
Do things to stimulate cognitive function. Most of us here like to play Wordle on NY Times now. NY Times has a few other free games on their website, I enjoy connections and the mini crossword. I also like sudoku. Exercise helps cognition too.
You eventually get used to the new normal of altered sensation (at least for the most part). I have trouble remembering what normal sensation felt like, making it difficult to describe the alteration. The best I can say about it is decreased sensation to touch and temperature just about everywhere and pretty much numb bottoms of feet.
I hope you like your doctor and get started on treatment quickly. Ask for referrals to physical therapy or other therapies that might help with symptoms. You will probably get blood work done to check JC virus and vitamin D levels when you go so make sure you are hydrated to make the lab draw easier. Bring someone with you and take notes, you will likely get a lot of information.
Thank you so much for the info! I took some notes, so I can ask about the JC virus. I hope I can get a referral to Physical Therapy, I think that would really help. My husband has been going to all of my appointments with me, I tell them he is my memory, lol.
Would Lumosity, or apps like it help?
There are different symptoms of MS so it is difficult to predict what will happen - maybe alot or maybe not much. Get on a DMT for the best chances to help prevent MS progression.
I'm going on Kesimpta. The coordinator from the company already called me, so the ball is rolling. I just have to wait while they talk to my neuro and my insurance. Hoping it is not a battle with the insurance!
👍
Though both the MS diagnosis and the wait for an appointment are deeply distressing, you may find the delay to sit with your neurologist productive. First of all, it allows you to adjust to all those emotions the diagnosis brought up. It also provides you time to researh all the information available on this disease and the many treatments available.
Good accurate sources of information are both the MSSA (MS Society of America) and NMSS (the National MS Society). You will find charts that compare available drug treatments, how they are delivered (orally, injection, infusion) as well as the side effects of each. You can use this time to prepare questions for the neuro, to see which may be covered by your health insurance, and just as importantly, to take charge of your health care, to calm both the emotional flutter in your chest and the noise in your head.
Calm yourself, prepare carefully and you will be on your way to a better outcome than going in full of emotional angst and fear. We are all virtually at your side...we've been there too.
As far as your spinal headache.This is a severe issue and you need to contact your neurologist. The headache is being caused by leaking at the site of of the tap it hasn't scabed over and you may need a patch put in.
A hard way to learn about this in nursing school. Good luck.
I will just double down on ahrogers comment about exercise. My neurologist told me that the reason I have done so well after almost 40 years is because I kept up with exercising. And like goatgal said, use this time to learn and prepare for your appointment. I hope it goes well for you.
If you read stuff online, make sure it's a reputable company. The Mayo Clinic, for instance, is a pretty good, no nonsense place. Then remember, everyone's disease is different. When I was diagnosed (I'm "celebrating" 10 years this September) I knew one person with it. She is more affected than many - of course she was diagnosed before many, if any meds were out there. She uses a scooter. That really scared me. Now, nearly 10 years after I was diagnosed, I will, occasionally only, use a cane. I don't even think about it every day. So your story will be YOUR story. Maybe a harder road, but maybe an easier road. Be open to the different meds. I had reactions to the first two I was on. My third was the charm. So keep trying!
Good luck, and let us know how you are doing and if you have questions. We really care here!
Thank you so much! I have been reading here on MSAA's site and I did use Google and Pinterest for a while, but as you said, I learned to stay away from all that and am now sticking to more reputable websites. Reading the blogs of people with MS and what other people do to cope with certain things has also been helpful.
My dear friend, what you are experiencing is shared by all of us at time our journey! You are not alone. There’s no one blueprint for this MS, but with a dedicated treatment team and the right medication that is most suitable for you ; you can start to feel better. Keeping a journal of symptoms and any noticeable changes in your health would be helpful. I pray you feel better soon 🙏. Blessings NeeC
Well said NeeC!! 💕
I am MSFlea's husband. Glad to know there are communities like this out there where she (and I) can find some answers and support. Will be interested to read what everyone wrote.
Welcome to the forum, MSCanisLupus ! I am happy to see that you are supporting MSFlea by joining this forum. There is so much information on this forum to assist in trying to understand this disease. Don’t get too overwhelmed. Look forward to hearing more from you.
Ugghh the spinal headache!! As Scout4x4 said, they can do a blood patch for that and the pain stops instantly. My neuro told me about that when I had mine. So sorry they didn’t prepare you for that. I asked him how I’d know if I was getting one. He said it would be the worst pain I’d ever felt.
I know I’m late to the game here…..hope things are looking better! Prayers for some clear direction and good information for you!
The spinal headache is mostly gone today, thank goodness! I'm still taking it easy today, just in case. Have to call my neuro today and hope that there is a cancellation so that I can get in earlier than the 23rd with him!
Thank you, and I appreciate it!
yes it’s a scary diagnosis especially if you did not expect it. I would say from my perspective is not to panic. It’s really too bad that you have to wait to see a doctor or to get your diagnosis over the phone. Seems that medicine is coming down to that these days.This is just my personal opinion, but I would ask around and see if you can get an MS specialist to follow you. Also, I don’t know how much you know about MS. I thought I did even though I had a nursing degree. It helps to get online and find out as much as you can about MS and all the different medication’s being offered and be knowledgeable when you get to their first appointment. I know this is unsolicited advice, but I saw your post and wanted to see if there was anything I could contribute to your situation. Best of wishes.
Thank you so much! I have been researching MS, but I don't even know where to begin with the medicines for it. If you have any advice/suggestions on that, I would greatly appreciate it!
I woke up this morning and it felt so... not real. My head still thinks I'll bounce back from all of this and be fine. I guess it will take a while to come to terms with it. 💔
I have one:
tldrpharmacy.com/content/an...
This is old, but most of the meds are here. The trend to start at the least effective and work up to the most effective is dying out, so I would look into the "better" ones since this is likely what you will be offered. My neuro always gives me 3 options to choose from (except when I was pregnant, you could only take copaxone back then).
Route (pill, shot, or infusion), family planning, and insurance coverage will impact your options also. Once you're at 3, then it's easier to scour the internet for real world user experiences and look at the drug trial results, if those interest you.
Welcome! It takes a year to get over that initial diagnosis shock, sometimes longer. I like some of the neuro's on YouTube for general MS information; Aaron Boster, Ben Thrower, and Gavin Giovanonni. Gavin is my favorite and has loads of information on his websites and newsletters, which is handy for when issues come up or before/during discussion of treatment options with your provider. This one has links to online resources other than MSAA:
multiple-sclerosis-research...
You can search this site for specific symptoms or treatments to learn how this crew gets on. My neuro's best advice was to stay off of the internet 🤣 She meant that because it's full of doom and trolls. This group is amazing though and I'm glad I found it when I was first diagnosed 🥰
I'm liking Aaron Boster, I binge watched a bunch of his videos yesterday, lol. I'll check the other ones out too. Thank you for the link, I'll check that out too.
I hear you on the diagnosis shock. I was okay with it yesterday, and this morning I feel like it can't be true. My tired body is telling me otherwise though.
You're welcome! There's days worth of information and many rabbit holes to drown in. I feel like for the amount of time spent in MS learning land, you should spend double that time doing normal or fun things that bring you peace and joy.
It's a rollercoaster, emotional and physical. The grief process takes its own time. This is what you're moving through. There's another round of it when you have your treatment chat, and again if you choose a med, and again the next time you have follow up scans and exams. After a while the MS shenanigans become mostly annoying.
I saw your husband's post here, MSCanisLupus You may giggle at this one. I had a flip out a few months in where I told my husband he was free to leave me. He was sweet and waited until the next morning to make fun of me about that 🤣🫣 We had our first kid a year later. He cannot understand what this is like, but he doesn't need to! He's a fixer, so I let him help. He can sniff out most struggles that I'm stubbornly trying to hide at this point, and if he tells me to go sit or go to bed, off I go. You'll find your own way, as a team 🥰
That is good advice, and after my neurology appointment (I got a cancellation spot for tomorrow!) I will take it. I do need to do more things that bring me joy, not just research MS stuff. Actually, I'll start today, I need the break. Thank you for the reminder!
I have a feeling it will be much the same way for me and my hubby, lol! He is also a fixer, and often notices my exhaustions before I'm willing to admit I'm feeling that way. I'm very fortunate to have him by my side. ❤️
Please let us know how your visit goes! I'm glad you got in early so you can get this next thing behind you 🎉
That's awesome that your hubby is so supportive. Good luck with your appointment!
listen to your neurologist write everything down and bring someone else to the appointment with you to listen to what the doctor says you won't remember everything yourself good luck
I'm almost wondering if the doc would let me record he appointment so I can remember everything, lol. I'm taking my husband MSCanisLupus with me to all my appointments. He drives me, because I'm too dizzy to drive most of the time. Or I get exhausted. I'm hoping that whatever DMT I end up on will help with that so I can drive again!
Hi and welcome! Lots of good advice already given, so to not overwhelm you, I just want to welcome you to the group 😊
Hi & welcome to our community 'mad house', sorry you were told in such an underhanded way. I was told in person by the Neuro, he said it so fast then dismissed me my head was swimming. Good thing I had my stepdaughter with me. That was 30 years ago & several DMTs. I have been reading through the answers lots of good advice. Just remember YOU decide what happens. Read & learn what you can about MS then you are better equipped to handle what comes next & don't forget to check in here ask questions, talk, vent whatever you NEED! we are here for each other & I'll be praying for you. Mary
Please don’t borrow any worry! MS is not a cookie cutter disease, your journey will be different. Most people have to deal with the inevitability of a lifetime disease which can be extremely difficult and depress the he-l out of you. Break plates scream do whatever you need to get through the denial or depressive stage but at some point it’s time to get busy! This does not have to be a bad thing. Just have a good neurologist get on the right DMT and strive for quality of life! My diagnosis was a relief because I had lived with it for Lord knows how many years before I finally went for help. I lost jobs, was belittled by EVERYONE and told I was a failure and I believed it. Had it not been for my son I would have taken my life! My life is better than it’s ever been and I’m 62. My relationship with Jesus Christ is why I’m at peace! My wife is severely bipolar 2 my only son left home and I got my diagnosis in the span of a year so I had some challenges. Getting up every day is fatigue and pain but I’m blessed. I have 75 lesions which have become 3 black holes but I don’t dwell on that. Having MS is like having a job. Do everything you can to maintain quality of life. God willing I’m going to skydive while I still can. You will always be in my prayers and I believe you will be better for this awful disease you’ve been diagnosed with. God bless you.’
Mark
I am so sorry to hear about the way you received your diagnosis, of course I understand how hard it is to hear those words and I can only imagine how much more difficult over the phone rather than in office face to face
Not what you're looking for?
You may also like...
Just diagnosed
Hi my name is Colleen and I was just diagnosed with ms on May 2, 2016. I just signed up to msaa...
Recently diagnosed
I was diagnosed with MS at the end of August. I care for my uncle who also has MS. He is in rough...
When we are newly diagnosed...
I've reflected at times about the way I was handed my diagnosis. I have read here about your...
Newly Diagnosed
After a year of testing, I have been diagnosed with MS. Not a shock since for the last six months...
Newly diagnosed
Hello MS peeps. I recently got my PPMS diagnosis in July. Think I've had the symptoms for a couple...
New Member Freshly Diagnosed (March 2018)
Crying fits And or mini breakdowns 
Newly Diagnosed
Newly Diagnosed
