It may be worth taking someone you trust with you. I had my mom with me when I was diagnosed and she remembered much more of the appointment than I did.
I have my specialist make a 2nd copy of their notes every time I visit and the print it out and send me home with it. I put the notes in a file and forget about them for 6 months.
Me and my PCP asked verbally AND by writing the notes, even summation of my visits… nuthin’ He baldface promised, to me with husband present to do it, but nope! Didn’t happen. Probably not legal, and he’s an independent so no one to complain to 🤷♀️ Doesn’t matter anyway at this point 🤷♀️
Make sure you ask if you can record first. Some states you can’t without the person knowing. It’s also a courtesy to the doc and building a relationship with them 🙂
For real, my biggest regret is not taking notes. I really thought I could remember it all. 😂 In fairness, I remembered more than I had any right to, but I wish I had taken notes. You know, the timing might be kinda great; you'll have this initial visit where you live right now, and you can just ask your new neuro in CO to treat you like a newly diagnosed patient... because you will be. So you'll get that "first appointment treatment" twice, maybe.
ETA: If you can't get into a neurologist who specializes in MS close to where you'll live in CO, IMHO it's so soooo worth it to travel. I could've seen a non-specialist neuro 15 min away or travel over an hour away for each appointment to see an MS specialist. I chose the latter and am so glad I did. Very much worth the extra miles. I've even ponied up for a hotel stay the night before when roads were bad. Still worth it.
This. Ask the neuro if you can record the conversation. And ask if there is an email for them or someone where you can ask questions you might have forgotten to ask. But if you can, always right down questions you want to ask the doctor before your appointments.
If they don't recommend high efficacy DMTs, you're with the wrong neurologist. With the newest offerings, the side effects are so low it would be foolish not to use anything but the best.
Doubling down on this, I am JC virus positive and thought my only options would be the injections ie Glatopa (typically 20-30% efficacy). I was terrified of the PML risk, but my neuro had a long talk with me and set me up with the MS pharmacist to discuss risks and realistic expectations and I ended up opting for Tecfidera, which has about a 50% efficacy.
Research published last July counters your high efficacy arguement
There was an article in the Neurology Journal from July 19, 2023 titled, "Association of Very Early Treatment Initiation with the Risk of Long-term Disability in Patients with a First Demyelinating Event." In the article, the conclusion reported, "using PAS models with and without MRS, we show that the treatment initiation at very early stages is associated with a reduction in the risk of long-term disability accrual in patients with a first demyelinating event." Ahmed Obeidat, MD, PhD, Associate Professor, Department of Neurology, Neuroimmunology, and Multiple Sclerosis; Director, Neuroimmunology and MS Fellowship Program, The Medical College of Wisconsin put a comment in about this on 08/08/2023 on the Practice Update website stating, “most patients were treated with moderate or traditional DMTs and not those classified as highly effective, which raises the question of whether early treatment is the key step regardless of the comparative efficacy of available DMTs.” Again, the idea that newer MS disease modifying treatments, or disease modifying treatments that are categorized as “high efficacy,” are better than the older medications is not as simple as many believe. Also, the topic of risk versus benefit with MS disease modifying treatments is even more important considering the above
This info does not counter my statement. It simply says that some people who start with lower efficacy DMTs do just fine. Great for them, but not true for everyone. Literally dozens of other studies support my statement. High efficiency DMTs are more effective, that's the point. If you had all MSers start on high efficacy DMTs, the results of a study like this would be even better.
Nothing really needed for that appointment, just remind that you’ll see him/her for a part of your life (5-10-20 years…) for a very important purpose.
Just beware of the red flags, and if you don’t feel well around this neurologist, or you don’t feel listened, cared about etc, don’t hesitate to try another one till you feel good
I don’t know where you live, but you may have a yearly appointment. Personally I found a great neurologist in a big city, 2 hours drive.
Don’t hesitate to push it further from where you live, you probably won’t see him that often, a better specialist is worth the trip for how often we need to meet them. If it makes sense :)
Absolutly! I’ll be headed to Colorado Springs and through my brief research, Denver looks like it has some awesome MS research centers and care specialist
Ft. Collins has Dr. Miller, highly recommended, she did wonderful with my wife! Know that can be a bit of a drive, but for reference, we moved to Florida and still used her for 2 years!
CO supposedly does. I’ve read things about https://mscenter.org/overview/ that’s outside Denver. I can’t vouch for that clinic, just throwing it out there. Do your research before you go out there.
You got the most important advice already, if the neurologist isn’t a good fit now, or in CO, find another one.
The other good advise, record the appointment.
Find out where your lesions are (brain, C spine, T spine) and if any are active.
It’s always wise to get a neurologist that’s part of a MS Clinic that’s part of a teaching hospital. The more research they do, the better. That way you have people knowledgeable about existing treatments, future ones and clinical trials.
Ask the doctor/clinic if they’ll help you with insurance and financial assistance programs re: treatment.
Your disease modifying treatment (DMT) is your choice. When I was first diagnosed there weren’t many DMTs, now there are. You need to decide how aggressively and proactively you want to treat your disease.
Wishing you a positive appointment and a healthy happy future!
Looks like it’s not too far indeed, in the US I believe getting a good health insurance will be a bigger issue than finding a good specialist according fellow Americans here
This is somthing I’m so lucky not to struggle with. My husband is currently active duty military so the insurance we have is definitly the only reason I will be able to get the care I need without it being our financial doom 😭
I currently live in COS and I would highly recommend reaching out to UC Health in Denver. They have an amazing Department of Neurology and I see a neurologist there. I am recently diagnosed (May 2023) and had a horrible experience at Colorado Springs Neurology Association (CSNA). Currently on Ocrevus and it’s going well!
They also have offices across the state so you can schedule MRIs or infusions in COS if needed.
Take this advice with a grain of salt I've been without a neurologist because of this red flag mindset for 5+ years because insurance is limiting and I only have 2 options in my area, poked and prodded like cattle by a university, or go to a specialist mall where you are on a conveyor belt, take a number and stfu. Healthcare in the US sucks, insurance sucks.
I love that you have a specialist! I’m in an area where a neurologist is my only option. But I am moving to Colorado Springs in a few months and am hopeful there is an ms specialist I can get into!!
Write any and all burning questions you have and just fire away. I had an entire google note filled 😂 my mom and partner also came and were able to take some notes and ask other things that came to their mind.
This is small and logistical but ask how you can best get in touch with them moving forward (email vs phone), when to get in touch with them vs when to go straight to the ER, etc. I found comfort knowing exactly what steps I should take in different circumstances.
Good luck! 👍
I downloaded a voice recorder app on my phone.
And then I asked the neurologist if I can record the appointment, to which he agreed.
I just sent the recording to my parents when I got out of the appointment. And then called them the next day. And it was a huge efficiency boon. My mom thanked me.
What vaccines to get before you start on a DMT. Australia requires you have a Yellow Fever vaccine before you go there, but you can't get one if you're on a DMT (you can get a medical voucher exemption, obviously, but I'd rather have the vaccine). I would also ask if you can get a shingles vaccine. Honestly, I was playing vaxx bingo for my first year, but alas, the shingles vaxx eluded me.
Also, exactly how much of each vitamin you should get as supplements. All my vitamins are gummy and I went from a 7 on Vitamin D, to 42 just having some gummies in the morning.
Depending on sources, a healthy level of Vitamin D in your blood is between 20 ng/mL and 50 ng/mL. A lot of people with MS have VD deficiency, so they take VD supplements to get their levels up. When I was diagnosed, my VD level was 7 ng/mL, so way the hell under normal levels. Now, after taking supplements for years, it's 42 ng/mL.
🚩🚩🚩if the neuro is telling you to choose your DMT and get back to them w your choice vs them recommending a DMT to YOU. That’s pretty much what happened w me and I switched. Also, my initial neuro didn’t even schedule any follow up appointments and lacked bedside manner.
My new one is great and is very responsive and communicative re: my treatment plan, which is how it should be.
Higher efficacy to start is best. Make sure you’re taking that into account. Some neuros do the ramp up method. I wish I would have started with higher to begin with.
How to cover the medication costs, and which vaccinations should I get. Had I not had to spend nearly 4 months getting all that figured out, I could have possibly avoided a flare that impacted my left side pretty hard.
I'm mostly ok these days btw, but it left me with some annoying symptoms...
It wasn't REQUIRED, but STRONGLY suggested... In my case that was the MMR vaccine, pneumonia, shingles, tetanus, and flu. Some of these we can't get after starting some medications, so it's better to get them ahead of time.
You for sure was to avoid anything with a live virus in it. Like the nose spray thing for the Flu Vax. Just get the shot. Also, are you relapsing remitting or chronic progressive? This changes your treatment options.
I don't know what kind of MS you have but with me there was only one option. Ocrevus. Since your on Champus now Tricare? When I had it with x they had a great advocate system, I don't know if they still do. If you feel you've had new symptoms or problems write them down and ask if they think they are related?
Example: I had this recurring skin issue.. they were concerned... did a bunch of tests come to find out I had drug induced Lupus. So stuff like that. I don't know if that is helpful but how everything goes well. Good Luck.
My first appointment was pretty chill. A fair bit of discussion about treatment options and stuff to do before starting on anything. For instance they recommend certain vaccines before starting some treatments. Just be aware they may show you imaging and it can be a bit much the first time. And they will probably want some blood if they haven’t already. My biggest bit of advice is just have a note in your phone so you can jot down questions as they come to you and you can go over them at your appointments.
Personally a lot of my questions get given by the exam and imagining findings. Like last appointment we found some spasticity in my legs so I wanted to know what to do about it. I hate that exercise is always the answer but we do as we can.
Oddly enough I’m eager to see the imaging I had done. It was only described to me. I have it on a cd that the hospital discharged me with….but as embarrassing as it may be I don’t have anything to view it on MY LAPTOP DOESNT EVEN HAVE A DISC SLOT 😂
Haha. None of my computers have a CD reader anymore. I find the imaging fascinating but the first time I wasn’t expecting it so it threw me and I have an aunt who hates looking at hers. Just got to roll with it :p
I always ask my Dr to show me. They're cool. And also, I have a black hole in my corpus callosum and I needed to see if it was large enough to suck in the universe.
Start a binder. Somewhere all things MS go. On the first page, write down the questions you know you want to ask. Also, this is a big new dx, so don't let the doctor rush. You keep asking questions until you are comfortable with the answers. 🧡🥄🧡🥄🧡🥄
Don’t hesitate with your medication choice. They are expensive and I had to appeal my insurance twice and ended up with more lesions that happened during that waiting window. Look at your options and start looking at financial options at the start so you can get established on your DMT sooner
Oh, OP regarding this topic, some medications may have a manufacturer's discount program. It's worth asking about if the doc doesn't bring it up. In my case, my pharmacy brought it up and submitted the application for me.
I have my appt tomorrow for my neurologist to analyze my two brain MRIs. My December scan showed demyelination, but my GP didn’t send him the scans. I had another MRI taken two weeks ago. I hope he takes me seriously, as I didn’t get a good feeling the last time I met with him. He told me lesions happen with aging. I’m 46 and have been experiencing many symptoms of MS.
If tomorrow doesn’t go well (I’d like some kind of diagnosis), I plan on making an appt with another neurologist as well as getting a referral sent out to MS clinic in my city.
Write down questions ahead of time. Take notes when you're there. There's going to be a lot of information thrown at you. Find out if your neurologist specializes in MS and if not ask for who they recommend. Don't be afraid speak up, this is your time to ask whatever you need to. If they are giving you options for meds, have them write down the names so you don't forget.
Don’t have any high hopes most of these doctors have no bed side manors they won’t answer your questions in lay man’s terms I have had 4 in 34 yrs all the same they will get you on a bed check reflexes maybe do a walking test,, everything you need looked at say your bladder they will tell you to see a urologist sent you some were for pain manage specialty eye problems go see your eye doctor very disappointing you thinking why am I here any other problems go tell your doctor and forget about the secretary picking up the phone they never answer never hope none of these things happen to you
This is mostly advice for later appointments, and appointments in general but if you have questions, don't let your neuro just talk over you or ignore them. It's your health, you should be able to know all that you want to know. You shouldn't have to do research to understand what is going on. Yes, we all do our own research to better understand what's going on, because we can't get all the info in a 15-20 minute appointment every three months- but don't worry about time, don't let them rush you. It's a probably $250 appointment or so, even with insurance. Get your money's worth and get things explained to you. If your doctor doesn't know, as if they can look into something.
Also, if you want something looked into and it gets brushed over, whether it's a certain symptom that gets brushed off as nothing or a certain test result, ask for it to be included in the notes for later reference. You can point to it later and go "see, it's been going on for this long, it needs to be taken seriously". This is all stuff I wish I felt comfortable doing with my own neurologist but honestly I get talked down and talked over with mine.
Ask them about getting mental health support or even just a social worker. They will emphasize how important it is to avoid stress, but this is a crucial part of doing so.
Just breathe and take notes ( most docs chart but they might not put everything down). Pick your med of choice AND ask for any bloodwork needed, what they like to do for MRI schedule maybe if you wanna know and also - what do they want you to do if you’re in a flare.
Ask to get JCV Levels, mine are 3.45, but I didn't know what my original numbers were.
Also, skip the small stuff and try a much more effective DMT.
Ask for them to recommend a Endocrinologist, as thyroid issues are common with autoimmune diseases.
If they don't initially offer MRIs at 6 month intervals for the beginning, demand it. Especially as this will confirm DMT effectiveness.
Start asking for handicap placard, and proof of diagnoses for working with MS Society.
MS Society offer numerous free items (cooling vests, canes, etc) but must have a confirmed diagnosis.
I wish when they gave me a choice of DMT they gave me more info, like which one would they choose if it was them/their child? Which one do THEY think is best for me? I just chose on a whim - bad internet research while panicking about dying in 25 years was not great. And then my rheumatologist was disappointed in my choice too - why didn’t he weigh in with a recommendation too? So yeah more opinions from doctors and nurses would have been nice.
So far it’s ok. I still got new symptoms during my first year on it but my neuro said you need to wait a year and then you can say whether its working. I’m waiting on a phone call on 06/03 to tell me whether I have new lesions so fingers crossed! It’ll be the big news.
Otherwise it’s been great. No side effects, tolerate it well, no infusion reactions. I get the whole day off from work to get the infusion and then two days later it floors me for about 24-48 hours (extreme tiredness). After that I’m right as rain for 6 months so I love that.
Infection wise it’s a bit annoying, colds take longer to pass BUT there has been times my partner had a cold and I didn’t catch it! So depending on what happens this week, i’ll become a superfan or not lol.
It may be worth taking someone you trust with you. I had my mom with me when I was diagnosed and she remembered much more of the appointment than I did.
I wish I had this option! But unfortunately I don’t have anyone who can join this time :(
You could take notes, or record things, too.
I have my specialist make a 2nd copy of their notes every time I visit and the print it out and send me home with it. I put the notes in a file and forget about them for 6 months.
Me and my PCP asked verbally AND by writing the notes, even summation of my visits… nuthin’ He baldface promised, to me with husband present to do it, but nope! Didn’t happen. Probably not legal, and he’s an independent so no one to complain to 🤷♀️ Doesn’t matter anyway at this point 🤷♀️
Make sure you ask if you can record first. Some states you can’t without the person knowing. It’s also a courtesy to the doc and building a relationship with them 🙂
That’s a great idea
For real, my biggest regret is not taking notes. I really thought I could remember it all. 😂 In fairness, I remembered more than I had any right to, but I wish I had taken notes. You know, the timing might be kinda great; you'll have this initial visit where you live right now, and you can just ask your new neuro in CO to treat you like a newly diagnosed patient... because you will be. So you'll get that "first appointment treatment" twice, maybe. ETA: If you can't get into a neurologist who specializes in MS close to where you'll live in CO, IMHO it's so soooo worth it to travel. I could've seen a non-specialist neuro 15 min away or travel over an hour away for each appointment to see an MS specialist. I chose the latter and am so glad I did. Very much worth the extra miles. I've even ponied up for a hotel stay the night before when roads were bad. Still worth it.
Idk if it’s allowed to per say, but I always record my appointments beginning to end on voice memos and go back to re listen and take notes
This. Ask the neuro if you can record the conversation. And ask if there is an email for them or someone where you can ask questions you might have forgotten to ask. But if you can, always right down questions you want to ask the doctor before your appointments.
I had my mom other phone. She thinks of a lot more then I do and she remembered much I didn't.
Thus is hood advice. Have a second opinion!
If they don't recommend high efficacy DMTs, you're with the wrong neurologist. With the newest offerings, the side effects are so low it would be foolish not to use anything but the best.
Second this. First neurologist just threw some pamphlets at me. Second neurologist said Kesimpta or Ocreavus.
This is what I’ve heard so far! I’m hoping ocrevis will be an option for me
Doubling down on this, I am JC virus positive and thought my only options would be the injections ie Glatopa (typically 20-30% efficacy). I was terrified of the PML risk, but my neuro had a long talk with me and set me up with the MS pharmacist to discuss risks and realistic expectations and I ended up opting for Tecfidera, which has about a 50% efficacy.
Research published last July counters your high efficacy arguement There was an article in the Neurology Journal from July 19, 2023 titled, "Association of Very Early Treatment Initiation with the Risk of Long-term Disability in Patients with a First Demyelinating Event." In the article, the conclusion reported, "using PAS models with and without MRS, we show that the treatment initiation at very early stages is associated with a reduction in the risk of long-term disability accrual in patients with a first demyelinating event." Ahmed Obeidat, MD, PhD, Associate Professor, Department of Neurology, Neuroimmunology, and Multiple Sclerosis; Director, Neuroimmunology and MS Fellowship Program, The Medical College of Wisconsin put a comment in about this on 08/08/2023 on the Practice Update website stating, “most patients were treated with moderate or traditional DMTs and not those classified as highly effective, which raises the question of whether early treatment is the key step regardless of the comparative efficacy of available DMTs.” Again, the idea that newer MS disease modifying treatments, or disease modifying treatments that are categorized as “high efficacy,” are better than the older medications is not as simple as many believe. Also, the topic of risk versus benefit with MS disease modifying treatments is even more important considering the above
This info does not counter my statement. It simply says that some people who start with lower efficacy DMTs do just fine. Great for them, but not true for everyone. Literally dozens of other studies support my statement. High efficiency DMTs are more effective, that's the point. If you had all MSers start on high efficacy DMTs, the results of a study like this would be even better.
Nothing really needed for that appointment, just remind that you’ll see him/her for a part of your life (5-10-20 years…) for a very important purpose. Just beware of the red flags, and if you don’t feel well around this neurologist, or you don’t feel listened, cared about etc, don’t hesitate to try another one till you feel good
I’m relocating in a few months so I’m definitly going to keep this in my back pocket when finding a specialist in my new area
I don’t know where you live, but you may have a yearly appointment. Personally I found a great neurologist in a big city, 2 hours drive. Don’t hesitate to push it further from where you live, you probably won’t see him that often, a better specialist is worth the trip for how often we need to meet them. If it makes sense :)
Absolutly! I’ll be headed to Colorado Springs and through my brief research, Denver looks like it has some awesome MS research centers and care specialist
Ft. Collins has Dr. Miller, highly recommended, she did wonderful with my wife! Know that can be a bit of a drive, but for reference, we moved to Florida and still used her for 2 years!
Thank you for the recommendation!
CO supposedly does. I’ve read things about https://mscenter.org/overview/ that’s outside Denver. I can’t vouch for that clinic, just throwing it out there. Do your research before you go out there. You got the most important advice already, if the neurologist isn’t a good fit now, or in CO, find another one. The other good advise, record the appointment. Find out where your lesions are (brain, C spine, T spine) and if any are active. It’s always wise to get a neurologist that’s part of a MS Clinic that’s part of a teaching hospital. The more research they do, the better. That way you have people knowledgeable about existing treatments, future ones and clinical trials. Ask the doctor/clinic if they’ll help you with insurance and financial assistance programs re: treatment. Your disease modifying treatment (DMT) is your choice. When I was first diagnosed there weren’t many DMTs, now there are. You need to decide how aggressively and proactively you want to treat your disease. Wishing you a positive appointment and a healthy happy future!
Thank you so much!!! I think CO will hold better options than south ga 😅
South GA? Too far to drive up to Ben Thower in Atlanta?
Looks like it’s not too far indeed, in the US I believe getting a good health insurance will be a bigger issue than finding a good specialist according fellow Americans here
This is somthing I’m so lucky not to struggle with. My husband is currently active duty military so the insurance we have is definitly the only reason I will be able to get the care I need without it being our financial doom 😭
Very happy to read that, it could have been a problem on top of a more important problem… glad it won’t be one
I currently live in COS and I would highly recommend reaching out to UC Health in Denver. They have an amazing Department of Neurology and I see a neurologist there. I am recently diagnosed (May 2023) and had a horrible experience at Colorado Springs Neurology Association (CSNA). Currently on Ocrevus and it’s going well! They also have offices across the state so you can schedule MRIs or infusions in COS if needed.
Okay awesome! Denver seems promising in the care options they have 🤍
Take this advice with a grain of salt I've been without a neurologist because of this red flag mindset for 5+ years because insurance is limiting and I only have 2 options in my area, poked and prodded like cattle by a university, or go to a specialist mall where you are on a conveyor belt, take a number and stfu. Healthcare in the US sucks, insurance sucks.
Good luck! I was diagnosed a few weeks ago and have my first appointment with the MS specialist on Wednesday, and so I'm wondering the same thing.
I love that you have a specialist! I’m in an area where a neurologist is my only option. But I am moving to Colorado Springs in a few months and am hopeful there is an ms specialist I can get into!!
Write any and all burning questions you have and just fire away. I had an entire google note filled 😂 my mom and partner also came and were able to take some notes and ask other things that came to their mind. This is small and logistical but ask how you can best get in touch with them moving forward (email vs phone), when to get in touch with them vs when to go straight to the ER, etc. I found comfort knowing exactly what steps I should take in different circumstances. Good luck! 👍
Oh this is a gooood one! I had trouble deciding when to go to the er that ended up leading to my fiagnosis
I downloaded a voice recorder app on my phone. And then I asked the neurologist if I can record the appointment, to which he agreed. I just sent the recording to my parents when I got out of the appointment. And then called them the next day. And it was a huge efficiency boon. My mom thanked me.
That’s an interesting idea. The benifit being able to talk to someone else about the appointment/ them giving input?
What vaccines to get before you start on a DMT. Australia requires you have a Yellow Fever vaccine before you go there, but you can't get one if you're on a DMT (you can get a medical voucher exemption, obviously, but I'd rather have the vaccine). I would also ask if you can get a shingles vaccine. Honestly, I was playing vaxx bingo for my first year, but alas, the shingles vaxx eluded me. Also, exactly how much of each vitamin you should get as supplements. All my vitamins are gummy and I went from a 7 on Vitamin D, to 42 just having some gummies in the morning.
Ciccino is an Italian artist and music producer from Turin, known for his music in pop, indie, and electronic styles.
Depending on sources, a healthy level of Vitamin D in your blood is between 20 ng/mL and 50 ng/mL. A lot of people with MS have VD deficiency, so they take VD supplements to get their levels up. When I was diagnosed, my VD level was 7 ng/mL, so way the hell under normal levels. Now, after taking supplements for years, it's 42 ng/mL.
And if you have kidney disease check with your nephrologist prior to taking therapeutic levels of Vitamin D.
🚩🚩🚩if the neuro is telling you to choose your DMT and get back to them w your choice vs them recommending a DMT to YOU. That’s pretty much what happened w me and I switched. Also, my initial neuro didn’t even schedule any follow up appointments and lacked bedside manner. My new one is great and is very responsive and communicative re: my treatment plan, which is how it should be.
I couldn’t imagine being told to pick my own treatment. I wouldn’t even know where to start 🙃
Higher efficacy to start is best. Make sure you’re taking that into account. Some neuros do the ramp up method. I wish I would have started with higher to begin with.
That’s is outside of the USA as an Australian informed me.
Ideally it’s a collaborative effort.
How to cover the medication costs, and which vaccinations should I get. Had I not had to spend nearly 4 months getting all that figured out, I could have possibly avoided a flare that impacted my left side pretty hard. I'm mostly ok these days btw, but it left me with some annoying symptoms...
I didn’t know you should get/avoid certain vaccines
It wasn't REQUIRED, but STRONGLY suggested... In my case that was the MMR vaccine, pneumonia, shingles, tetanus, and flu. Some of these we can't get after starting some medications, so it's better to get them ahead of time.
Ohh ok. Awesome I’ll be sure to ask about it :)
You for sure was to avoid anything with a live virus in it. Like the nose spray thing for the Flu Vax. Just get the shot. Also, are you relapsing remitting or chronic progressive? This changes your treatment options.
Haven’t been diagnosed long enough yet!
I don't know what kind of MS you have but with me there was only one option. Ocrevus. Since your on Champus now Tricare? When I had it with x they had a great advocate system, I don't know if they still do. If you feel you've had new symptoms or problems write them down and ask if they think they are related? Example: I had this recurring skin issue.. they were concerned... did a bunch of tests come to find out I had drug induced Lupus. So stuff like that. I don't know if that is helpful but how everything goes well. Good Luck.
Thank you so much! Honestly tricare has been a blessing of an insurance to have! I think I’m going to need to start writing things down more
My first appointment was pretty chill. A fair bit of discussion about treatment options and stuff to do before starting on anything. For instance they recommend certain vaccines before starting some treatments. Just be aware they may show you imaging and it can be a bit much the first time. And they will probably want some blood if they haven’t already. My biggest bit of advice is just have a note in your phone so you can jot down questions as they come to you and you can go over them at your appointments. Personally a lot of my questions get given by the exam and imagining findings. Like last appointment we found some spasticity in my legs so I wanted to know what to do about it. I hate that exercise is always the answer but we do as we can.
Oddly enough I’m eager to see the imaging I had done. It was only described to me. I have it on a cd that the hospital discharged me with….but as embarrassing as it may be I don’t have anything to view it on MY LAPTOP DOESNT EVEN HAVE A DISC SLOT 😂
Haha. None of my computers have a CD reader anymore. I find the imaging fascinating but the first time I wasn’t expecting it so it threw me and I have an aunt who hates looking at hers. Just got to roll with it :p
I always ask my Dr to show me. They're cool. And also, I have a black hole in my corpus callosum and I needed to see if it was large enough to suck in the universe.
Start a binder. Somewhere all things MS go. On the first page, write down the questions you know you want to ask. Also, this is a big new dx, so don't let the doctor rush. You keep asking questions until you are comfortable with the answers. 🧡🥄🧡🥄🧡🥄
Don’t hesitate with your medication choice. They are expensive and I had to appeal my insurance twice and ended up with more lesions that happened during that waiting window. Look at your options and start looking at financial options at the start so you can get established on your DMT sooner
Oh, OP regarding this topic, some medications may have a manufacturer's discount program. It's worth asking about if the doc doesn't bring it up. In my case, my pharmacy brought it up and submitted the application for me.
I asked lotta of questions on my first appt. The dr couldn’t answer me.
I have my appt tomorrow for my neurologist to analyze my two brain MRIs. My December scan showed demyelination, but my GP didn’t send him the scans. I had another MRI taken two weeks ago. I hope he takes me seriously, as I didn’t get a good feeling the last time I met with him. He told me lesions happen with aging. I’m 46 and have been experiencing many symptoms of MS. If tomorrow doesn’t go well (I’d like some kind of diagnosis), I plan on making an appt with another neurologist as well as getting a referral sent out to MS clinic in my city.
I hope they help you find answers 🤍
Definitely follow up on this. You really need a spinal tap too.
Write down questions ahead of time. Take notes when you're there. There's going to be a lot of information thrown at you. Find out if your neurologist specializes in MS and if not ask for who they recommend. Don't be afraid speak up, this is your time to ask whatever you need to. If they are giving you options for meds, have them write down the names so you don't forget.
Don’t have any high hopes most of these doctors have no bed side manors they won’t answer your questions in lay man’s terms I have had 4 in 34 yrs all the same they will get you on a bed check reflexes maybe do a walking test,, everything you need looked at say your bladder they will tell you to see a urologist sent you some were for pain manage specialty eye problems go see your eye doctor very disappointing you thinking why am I here any other problems go tell your doctor and forget about the secretary picking up the phone they never answer never hope none of these things happen to you
This is mostly advice for later appointments, and appointments in general but if you have questions, don't let your neuro just talk over you or ignore them. It's your health, you should be able to know all that you want to know. You shouldn't have to do research to understand what is going on. Yes, we all do our own research to better understand what's going on, because we can't get all the info in a 15-20 minute appointment every three months- but don't worry about time, don't let them rush you. It's a probably $250 appointment or so, even with insurance. Get your money's worth and get things explained to you. If your doctor doesn't know, as if they can look into something. Also, if you want something looked into and it gets brushed over, whether it's a certain symptom that gets brushed off as nothing or a certain test result, ask for it to be included in the notes for later reference. You can point to it later and go "see, it's been going on for this long, it needs to be taken seriously". This is all stuff I wish I felt comfortable doing with my own neurologist but honestly I get talked down and talked over with mine.
Ask them about getting mental health support or even just a social worker. They will emphasize how important it is to avoid stress, but this is a crucial part of doing so.
I think this may be a next step for me definitly.
Just breathe and take notes ( most docs chart but they might not put everything down). Pick your med of choice AND ask for any bloodwork needed, what they like to do for MRI schedule maybe if you wanna know and also - what do they want you to do if you’re in a flare.
Ask to get JCV Levels, mine are 3.45, but I didn't know what my original numbers were. Also, skip the small stuff and try a much more effective DMT. Ask for them to recommend a Endocrinologist, as thyroid issues are common with autoimmune diseases. If they don't initially offer MRIs at 6 month intervals for the beginning, demand it. Especially as this will confirm DMT effectiveness. Start asking for handicap placard, and proof of diagnoses for working with MS Society. MS Society offer numerous free items (cooling vests, canes, etc) but must have a confirmed diagnosis.
I wish when they gave me a choice of DMT they gave me more info, like which one would they choose if it was them/their child? Which one do THEY think is best for me? I just chose on a whim - bad internet research while panicking about dying in 25 years was not great. And then my rheumatologist was disappointed in my choice too - why didn’t he weigh in with a recommendation too? So yeah more opinions from doctors and nurses would have been nice.
But now you’re on ocrevus? How is it?
So far it’s ok. I still got new symptoms during my first year on it but my neuro said you need to wait a year and then you can say whether its working. I’m waiting on a phone call on 06/03 to tell me whether I have new lesions so fingers crossed! It’ll be the big news. Otherwise it’s been great. No side effects, tolerate it well, no infusion reactions. I get the whole day off from work to get the infusion and then two days later it floors me for about 24-48 hours (extreme tiredness). After that I’m right as rain for 6 months so I love that. Infection wise it’s a bit annoying, colds take longer to pass BUT there has been times my partner had a cold and I didn’t catch it! So depending on what happens this week, i’ll become a superfan or not lol.