New to group

[TMStein]

Hello all! I am 45 & was diagnosed with MS on January 9th. I have a 2nd opinion scheduled at UVA MS clinic next week and was wondering if anyone can offer advice on what I need to ask them. My symptoms have been fairly minor but as I've been reading everything I can get my hands on about MS, I've been wondering if I just didn't know that I was experiencing symptoms. Thank you in advance for any thoughts or advice.

[ssdw1958]

Can you tell us what your symptoms are as you will find out we all have different symptoms.

Also I am sorry that you have MS. What you should do is write down your symptoms so that you can let your doctor know what is happening with your body. Even if you think it is miner, like if your finger tips feel numb or if you have been tripping even if it was only once or twice. And if you have any questions write them down. Are you going to take any one with you and if you are let them know what your questions are and if you forget to ask one they could remind you.

Good luck with everything thing. Oh I forgot if you have copies of an MRI or any other test bring the with you and if you didn't get copies you need to get them, they are yours.

[Jesmcd2 CommunityAmbassador]

Hi TMStein Welcome to My MSAA Community 😊 I am so sorry for the reason tho.

Having MS is NOT something I would wish on anyone.. but it can be managed.😊 And with help, it's not so scary.

I found this for you to check out, it will hopefully answer some of your questions.

mymsaa.org/ms-information/n...

If not, and or you just need us, we are here.💕

Jes🌠

[Royjr]

I second everything ssdw 1958 said. Keep the faith and I hope you get a definitive diagnosis because early treatment is important in whatever illness you have.

[Juleigh21]

I had symptoms for 7 years before I was diagnosed.

[Midgey_Midge06]

Hi and welcome to the group! You will find so much support and caring here its wonderful!

My suggestion is to make a list of your questions. Number them and leave space between them and read it over with who you are seeing. My neuro will write notes for me on each one.

And for sure take someone with you if possible. They will remember not only your questions but help you remember the answers later.

The first few months after your diagnoses can be a rollercoaster of emotions for you. Tell your doctor about those as well. If it becomes to overwhelming they may be able to help you with that as well.

[Fancy1959]

TMStein, it's Fancy1959. I would like to officially welcome you to our extended family. You have found an awesome chat room where you can come and feel safe as you ask questions, voice concerns, or simply wish to speak to others who understand what you're going through. The people of this chat room are some of the kindest, most caring, and compassionate people I have ever met.

Start making a journal of your MS symptoms. Record when they hit, how long they last, how severe they are, and of course the symptom itself. If you take notes in a journal you will forget less when you go to visit your neurologist. It's not really for me to say what you should ask your neurologist because it has to be centered around what you are going through. List anything that is outside your body's normal realm of symptoms or feelings. You might think about coordination, tingling in any parts of your body or pain in the same, you might think about your balance and your bladder control, even your eyesight. There are literally hundreds of things that MS can affect to different degrees.

So if anything new or different has come upon you recently in the last few months or even a year write it down and ask about it a possible concern when you go to your neurologist. Good luck with your visit and please let us know about the outcome. Until we speak again please take care of yourself and remember together we are stronger!

[kris1973]

One helpful thing I have done since my very 1st appt is to request the office note thru the patient portal after each visit. Not all the symptoms discussed during your appt will be noted in the records. If I see something missing I add it to the list in my phone for my next appt. -Kris

[rlh1974 in reply to kris1973]

kris1973 I do that too! Great advice! you stole my thunder! LOL!

Rob

[kris1973 in reply to rlh1974]

rlh1974 Sorry...not sorry! I can’t get the Cheers song out of my head! 😂 -Kris

[rlh1974 in reply to kris1973]

kris1973 you are welcome! At least it's a great song. I mean, who doesn't want to go where everyone knows their name?!

Buwahahahahahahahahahahaha!

[Midgey_Midge06 in reply to kris1973]

thats a good one! I used to do that at first and it helped me understand the doctors point of view as well

[rlh1974]

TMStein Welcome to the group! That is something i say and then stop and think. Going Hmmmmmm, is that really something we should be saying? But, it is. Because despite this illness we all face that can be scary as $%^& sometimes, This is a place to come and safely ask questions, to find opinions and facts. Most importantly, this is a safe place where everybody knows your name. Sorry for stealing the cheers opening. Anyway, what I mean is. You can come hear and read, ask questions or even get a healthy dose of sarcasm and fun! This is a group of great friends and now we have another friend!

As far as what to ask and how to go about I think Fancy1959 and everyone else have covered that. The one piece of advice I would give is, Tell your Dr everything! even if it is or seems trivial. I ignored symptoms for years like my MS hug, and heat intolerance and weakness to years of great bourbon and bad decisions leading to fun but in most cases also in the emergency room! LOL Seriously, lay all your cards on the table. I never did and it cost me 10 years of this disease running rampant in me without Disease Modifying therapy and once I was diagnosed I was already in progressive MS stages and I was only 41 at the time. I say this stuff not to scare you but to encourage to read like you have been, ask questions like you are and make friends like you are and most of all don't let this thing called MS define you!

So, I am normally never ever that serious! I don't know what just came over me! Most of time I am the funny snarky sarcastic one (one of many) in the group! Cough cough, I won't mention names Allen5280 and a couple others that will remain nameless. For now! Anyway. Welcome aboard! I pray you find your answers and please let us know what is going on. We all want to go through this with you! You are in a great place!

Rob,

[Allen5280 in reply to rlh1974]

Who moi? 🤔 never!!! 😂

[greaterexp]

Welcome to a great place filled with helpful people. These folks helped me so much during the first year after diagnosis, and they still support and encourage me.

I think some valid questions would be about your diagnosis and treatment. I'm not sure why you are seeking a second opinion or if it is mainly to see someone who truly specializes in MS for getting the best treatment options. If MS has been clearly diagnosed, you might ask about what treatments for your symptoms are available, as well as which DMT (disease modifying treatment or therapy), if any, would be your best choice for your situation.

Those first few weeks and months after diagnosis made me feel like I was drinking out of a fire hose, with so much information to take in. Taking small bites at a time will make things seem more manageable. As you go through all this information, remember that your MS is not my MS. In other words, you may read about folks whose symptoms are more severe, but your course is unique.

Join us often here to vent or ask questions. Jesmcd already gave you the link to MSAA, which has wonderful resources. Folks here can give you great suggestions for adapting to changes along the way. Every question you ask will probably help someone else, so ask any question you come up with.

We look forward to getting to know you better.

[janetb1968]

Hi nice to meet u and like everyone who advised u to write everything down if u can xxxx 😊

[TMStein]

Thank you all for your welcomes, comments & experiences. I am getting a 2nd opinion at the encouragment of my neurologist. I have had MRIs & a lumbar puncture. She wanted a neurologist that specialized in MS to give input prior to starting treatment.

I'm glad that I found this community and plan on staying tied into it. I'm a very positive person & decided on the day I was diagnosed that MS doesn't define who I am.

TMStein

[Peetzil in reply to TMStein]

Hi I am a newbie too...diagnosed just last week on 15th Feb, also waiting to see MS specialist 😉I love your attitude & feel exactly the same. I might have MS, but it doesn’t have me😎

[WAshingtongirl in reply to Peetzil]

Welcome, TMStein and Peetzil . As others have said, I’m sorry you’re here because of MS. But you have great attitudes! So happy to hear you both will be seeing a neuro who specializes in MS. 💕

[Peetzil in reply to WAshingtongirl]

Hi @Tutu thanks, yeah I feel fortunate that I will be seeing a specialist soon😊

[Allen5280]

I was finally diagnosed in 2014, after 4 years of traceable symptoms. Since MS can cause many different symptoms depending on the areas affected, it sometimes takes time for it to be properly diagnosed. There are some symptoms that we all share and it varies widely from person to person. I will never forget my clinical diagnosis of MS and the first thing I thought was this doctor has no idea what their talking about. I agreed to be transferred to a MS specialist and was verified by lumbar puncture. It was defiantly a trying time in my life, as for all of us that have been brought together. The one thing I would have changed about my early Drs visits were to write down all the occurrences and questions I wanted to talk about. It was a 4 and 1/2 hour appointment following my lumbar puncture and off on so many topics such as support and financial issues that I missed about half of what I wanted to discuss do to cognitive issues and such. Welcome and this is a great place to find help through a myriad of navigation through very trying time.

See what you started rlh1974 now I'm being serious as well, I think it might be contagious! 😁 I will find a change for that soon enough!

[ssdw1958]

So sorry your one of us it would be nice if the results are wrong 🤞cross my fingers they are wrong. But if there not take a deep breath and think positive.

And move on ask your doctor and questions you might have. Make a list first Look at the MS web site

Good luck to you

ssdw1958

[pihokken]

I agree with what everyone has said. Write everything down. Make sure you bring someone with you. I have found that I don’t remember everything after and it’s good to have someone to check with. I did not get diagnosed until I was 47 but when I started reading about MS, I could remember having symptoms all the way back to when i was19. Got misdiagnosed for all those years. To be honest, I was kind of relieved when I did get diagnosed. I knew I wasn’t crazy! And then I was able to start taking something so I felt I was being proactive. Seeing an MS specialist is key. Let us know how you make out. I just joined this group. I have found everyone to be very supportive. Good luck. Keep the positive attitude!

[Lisaupnaway]

Hi and welcome! I just joined this group recently but was diagnosed almost 10 years ago! Time flies. My diagnosis / tons of tests in all took about 4 mos. to finally get a definitive diagnosis. I went for a second opinion too. And glad I did. One thing a Dr. friend told me right before I was officially diagnosed is to stay off the internet and don't read all the symptoms types, affects long and short term. It does you no good and will scare the heck out of you. I tried to take his advice but couldn't help doing a lot of my own research online. Good and bad news.

Make sure you bring someone with you to help you ask questions and remember the answers. My husband came with me.

I too was relieved that I had an actual diagnosis. It explained a lot of the symptoms I had for years - but didn't know it! There are so many worse off cases and illnesses out there.

Regardless, stay active, follow your doctor's orders, ask questions if you're unsure, take your meds as ordered-- and relax. They told me 10 years ago, that my MS Symptoms won't be the same as you're experiencing 10 years from now. And there's a bit of truth to that.You learn to manage it. A lot of it is attitude and determination to keep life going as usual - with this new diagnosis - stay active and don't let it "run you" more than you "run it". Medical discoveries in the last 10 years has been remarkable. I'm positive as to where science will take us 10 years from now. Best of luck to you! You're going to be Ok!

[ssdw1958]

Hi lisaupnaway I wish you were the person I talked with 14 years ago. You would have put me at ease because the doctor I had was like not having a doctor and for some reason my husband thought if I did more research I would have known how to fight this disease. But no matter what I told him I didn’t know what I was taking about. Why is it you can tell someone something about this disease and even though they have not done any reading about it they seam to think they know more and I’m not just talking about my husband or even this disease. It can be any thing. Sorry about that I had to vent I just woke up 20 minuets AFO and I have a headache as big as my house and I have a small house. Well I don’t need to see the weather right now but we are going to get a storm on Friday and I feel that it’s coming. Sorry about going on talking like this bye for now.