Any suggestions for my 1st Neurology Appt??

[Mishella69]

Hello! I finally have my 1st Neurology appointment next week and I was wondering if anyone has any suggestions on what to bring or what to say to the Dr? I am been having these “Episodes” at least once a week since the week before Thanksgiving. Also, A lot of other things going on with me in between. I would love any suggestions. I desperately need answers soon since I have been missing so much work.

[Xvettech]

Hello! I hope this helps! I brought a list of everything happening. They could tell straight away cause of my “walking” or lack of. Lol. Good luck on your appointment! I hope your medicine works as good as mine does! It doesn’t help me walk. Physical therapy and exercise helps that, but it takes the pain away

[NorasMom]

Take a list of everything that's been happening but keep it brief and to the point. You can clarify things if he/she has questions, but it's easier for them to read over a list of "tripping, running into doors, dizzy spells" than it is when you add all the gory details.

Think positive. If this doctor blows you off, find another. Unfortunately, many of us have to go through several neuros before we find one who takes us seriously.

Good luck! And keep us posted on how it goes.

[Kit10]

Sorry to be cynical but ... plenty to keep you amused in the waiting room. Puzzle books seem to work best for me. And a pen. And chocolate. And a water bottle.

A list of the questions you want to ask and a pen to write down the answers.

More chocolate to cheer you up on the way home, maybe sandwiches too.

I hope you don't need it. Good luck.

[mrsmike9 in reply to Kit10]

Definitely write everything down! Nothing worse than leaving the office, then thinking..crap, I wanted to ask....

[RoyceNewton]

Ask which Disease Modifying Therapy he recommends and why. Hint YOU want the newest and strongest, it is aa twice a year infusion I forget its name but he will know, and what else does he recommend .

[Frances_B in reply to RoyceNewton]

It is clear from Mishella69's original question that she does not know what yet the cause of her problems is and that is why she is seeing the neurologist. She has to have a definite diagnosis before there can be any discussion about treatments or drugs, so to jump straight to comments about MS drugs is very premature - things have to happen in the right order Royce, and as you know there any many people who post on this board who are convinced that they have MS because Dr Google gave them a list of MS symptoms. Making a diagnosis is up to the docs, and as is also clear from many posts here of people's experiences, getting an MS diagnosis can take some time while other conditions that could be the problem are "ruled out".

[RoyceNewton]

I agree with the pencil and notepad because you will be overwhelmed.

[falalalala]

Write down any medication or supplements you take along with any questions you have.

Good luck

[CalfeeChick CommunityAmbassador]

Make a list of all your symptoms. Make a list of questions you have. Make a list of any medications you are taking, be through in everything because it can make a difference in what the Nuero may prescribe for you. Do some research on this site and others so you are more prepared. I’m glad you have found our website.

[hopeandgrace]

Maybe I am lazy, but I would just use the notepad on my phone instead of pen and paper since I can text faster than write! Oh and maybe take a video of what your neuro says if there’s too much to write down!

Also, my doctors tend to email me their notes, but l also have really great ones! Agreed with what was shared to see how this person fits and don’t be afraid to find another neuro.

Sorry to hear you have missed so much work. Bring your questions about work/ disability/ a parking placard/ being excused from jury duty/ etc, too!

Lifting up a prayer for you.

[309Ygi in reply to hopeandgrace]

wow you said that clear . Very nice with understanding. I have adhd . After reading all the post before your I was starting to get anxiety .. then I started reading yours and my heart calmed down , my Tummy dropped back down and the frog in my throat left . Thank you

[BlanketTime1]

the main thing i've learned is they don't care about the small stuff. they will tune out, so begin with the symptom that bothers you the most to get their attention. hopefully, you'll be able to go over more than just the worst ones, but who knows?

don't expect answers. a good neuro will want your whole history, do a neurological exam and order tests. keep us posted!🤗

[Cwright170994]

Like others have said, make a list of your symptoms. Ask if he/she could do an Evoked Potential Test and an MRI for you.

If, and when, you get diagnosed, make sure to take a number for the MS nurses. You can call them up to report any new symptoms, which may mean you have to change which medication you are on.

Good luck ❤️🫂

[Mishella69 in reply to Cwright170994]

thank you for your suggests! What is a evoked test?

[Cwright170994 in reply to Mishella69]

I've found a few websites that discuss the test:

hopkinsmedicine.org/health/....

This one goes into the different sorts of evoked potential tests.

gosh.nhs.uk/conditions-and-...

This one specifically talks about the visual evoked potential test.

The tests are done exactly the same no matter which stimulation they are using. It could be touch, sound, or visual. You have wires put on your scalp, and the radiographer would then start the stimulation, recording the signals the wires pick up. The "glue" they use to attach the wires just needs washing out when you get home, and can be done with normal shampoo 😊 hope I've given enough information that you could use when you see the Dr ❤️

[mrsmike9 in reply to Mishella69]

If you have to have a lumbar puncture (spinal tap), relax. They numb you and you only feel pressure. Keep your back very straight afterwards and lay flat in bed, getting up carefully to go to the bathroom, for several days to avoid the headache that some people get.

[Mishella69 in reply to mrsmike9]

thank you for the suggestion. That will be so hard for me because when I lay flat on my back I have a hard time breathing. That will not be fun! 🫤

[NorasMom in reply to Mishella69]

I am actually opposed to the evoked potentials. They were more painful for me than the spinal tap, and neither of mine showed any problems, including the one taken the same week as the MRI and spinal tap that verified MS. I've found a lot of people who've said the same thing about them. I wouldn't turn one down if the doctor recommended it, but it's not something I'd ask for. Focus on the MRI instead.

[309Ygi]

hip hip hurray So happy you finally are being seen . I took a list of all the weird stuff my body was doing From the cold spot on top of my head. . To vision loss . Arm tingling and cramp curling ing my arm . Numbness in fingers toes shins, tongue going numb fainting . Confusion , constipation fatigue. All things even embarrassing ones . Let us know . Prayers your way

[Sandydemop in reply to 309Ygi]

especially the embarrassing ones like incontinence.

[ahrogers]

Be prepared to give the history of your symptoms and have a neurologic exam. Don't worry, it isn't painful. Then ask what the most likely diagnosis would be. Likely will have more than one potential diagnosis. They will need to order further testing such as blood work and MRI. Based on those results you may have even further testing such as evoked potential and spinal tap. They will need to start narrowing it down and don't order every test out there to start.Good luck. Just be prepared that you will likely not walk away with a diagnosis after one visit. Don't get discouraged, you are on the first step in the right direction 😊

[Squirrel1270]

Like everyone else has suggested, write down a list of what you want to ask. I have an appointment with mine next week and I'm getting my list together. Never fails, I always think of something I should've asked after I've gotten into my truck after the appointment's over but forgot.

[Kenu]

Lots of good suggestions here 👍🏼 Take a significant other with you to help remember and understand what is going on. They could help take notes 📝 so you can concentrate on what doctors saying. Good luck 👍🏼 🙏😉

[NorasMom in reply to Kenu]

This is a big thing. I took my RN mother with me the first time, but I've used my son as my advocate when I'm having relapses. Having someone else with you gives you a better chance of remembering what the doctor said. I've tried taking notes on my own, and it doesn't go well.

[sashaming1]

Ask for a MRI to further see what is the issue. List all of your symptoms and could Dr. recommend any other Drs. for those symptoms.

[Sandydemop]

very thorough list from everyone. I would add invisible symptoms like fatigue. are afternoons harder than mornings? what about memory? please stay away from Dr. Google!

[Weaver9]

take some body. Hard to listen to everything.

[Mishella69]

thank you so much for the suggestions everyone! Each time I have an episode I write down everything I am experiencing and date. Also I have a list of symptoms I am experiencing and it is long!! I feel like I am getting worse. This week is bad. It is such a struggle!!

[Mishella69]

another question….should the brain mri and cervical mri have contrast?

[mrsmike9 in reply to Mishella69]

That depends on the doctor. Usually you do have it in the beginning to get a clearer picture.

[hopeandgrace in reply to Mishella69]

have you had an MRI before? I found out early on that I am allergic to the contrast fluid 🙁 just to beware of that possibility!

[Mishella69 in reply to hopeandgrace]

I had a Brain MRI 3 years ago but without contrast.

[Tazmanian]

Write down all your symptoms and medications both prescribed and otc write down the doctor's recommendations and bring someone with you it's hard to remember everything

[Fancy59 CommunityAmbassador]

Mishella69, Get yourself a large day planner with room to write notes everyday of the week and space for extra notes on the side margin. That way as symptoms appear you can jot down notes on what day they started and then in the margins you can ask questions or highlight things you want to ask the doctor. If you don't write them down ahead of time believe me you will forget half of what you meant to ask because I've often done that myself. It's important to note dates for the doctor so he can see patterns and suggest treatment options.

I hope this helps. Stay organized, that's the key. Remember knowledge is power and as always together we are not only stronger we are smarter! Take care and let us know how it goes. Fancy59.

[Mollyabigail]

Hi, Mishella 69. There is a free app called "keep notes." I list all my questions and weird symptoms, etc. there, then whip out my phone when I see my neuro. A piece of paper gets lost easily. Let us know how it goes!

[ekelks]

Hi, describing symptoms was my toughest part. i had a blind spot only didn't realize that, just said i saw something like a black moth in my eye... no one got that. tell them everything about your vision.

never told them i had problems peeing, took forever, couldn't pee. tell them anything about urinary & bowel movements.

make sure they test your reflexes, whether you have tremors, how strong you are, lifting legs, your sensation, what you can or can't feel.

ask them to do an mri of your brain. i dunno, i think it's better than a spinal tap, what they did years ago. ask then, if you feel claustrophobic in mri machine, if you can take something, like half a clonazepam, if you can get someone to prescribe something, to keep your anxiety level down. i have come to terms with MRIs, have had so many. i think of the magnetic knocking noises as industrial music, or sometimes just count seconds, or recite song lyrics in my head.

after all the tests are done, before the tests begin, you might want to bring a pen and paper...these days ask the doctor if you can record what she/he says on your phone. bring a friend to help you remember and bring a list of questions. make sure your voice is heard. ask questions about meds -- what are the side effects? how will they affect your life not just your ms, the rest of you.

find out if you need occupational therapy, like cooking if you have a tremor, or speech therapy, physical therapy. swimming, horseback riding, these things are very good if you have MS. ask if you have trouble walking, keeping your balance, what kind of tools will help, canes, walkers, scooters, etc., and get them to help you make surr your insursnce covers it. they have to write prescriptions the right way of you won't get financial help. Your local National MS Society can help, as can MSAA, another really helpful organization, with free therapy and other things, like cooling packs. -- keep cool, literally, try to keep your head out of hot places, like wear a hat, stay in the shade, don't wash your hair in very hot water, don't put your blow dryer on high heat.

Also make sure your neurologist specializes in MS. And if you prefer a man or a woman etc., find someone you're comfortable with, at least eventually.

best of luck, Mishella69