First Neuro appt on Mon.

[mtfbwy72]

What should I ask? I want to have my questions ready to go cause I will forget if I go by memory. What should I expect? I am expecting he will want a MRI with contrast since I got one with out. I have my most recent and extensive blood tests. Copy of MRI with my beautiful lesions, haha. List of current meds/supplements/symptoms. Anything else I need? I want to be prepared and get the most for my money. Specialist copay is expensive and I am a starving student, lol.

[rdmc]

There are really two schools of thought on first neuro appts. some people think you should go in and present the neuro with a list of all your symptoms.

It does feel like you need to explain everything so they don't miss some vital part of your story.

But years ago when I was going through the diagnostic process, and had had a couple frustrating appts, I was given this advice from my PT. When they ask you why you're there, list your 3 most bothersome symptoms, then let them do the work and ask questions. That advice worked for me and eventually led to my diagnosis.

Of course it all depends on the neuro. Hope your appt goes well.

[Strhuntrss]

Too much info

Thanks rdmc.

I wish I had this advice when I saw my neuro. Might have been why he was so short with me. I was giving him too much info. My next visit will be three short and sweet. But I too think I need to get the most of my visit for my money because it is so hard to get an appt with my neuro - 4 months sometimes. They sure are not like your pcp.

[JayEm]

I was given this advice from my PT. When they ask you why you're there, list your 3 most bothersome symptoms, then let them do the work and ask questions.

I don't think I've ever had a neurologist actually bother to ask me questions beyond what I had presented.

I've gotten the best results when I've had someone else go along with me for the appointment.

[rdmc]

Thanks rdmc.

I wish I had this advice when I saw my neuro. Might have been why he was so short with me. I was giving him too much info. My next visit will be three short and sweet. But I too think I need to get the most of my visit for my money because it is so hard to get an appt with my neuro - 4 months sometimes. They sure are not like your pcp.

I know about the waits...6 months for my first appt. with the MS neuro. Then I get a 6 month appt. So far haven't tried to get in between apps.

But my GP is just as booked up. Four or five weeks to get in to see him and I've even had that happen when I've come out of the hospital and been instructed to see my GP in two weeks...but I've had to wait a month. Or at an appt he'll say, "Come back and see me in a couple weeks." And I laugh and say, "You know that's not going to happen." (I can see the NP if it is an emergency...but she's not as Informed on my situation.)

Many docs in our area just say "Go to the ER, since they don't have appts available. I guess there are just too many sick people in my city

[mjan]

Good luck and yes you seem ready. I did add my medical history since birth in bullet points, along with my symptoms/test results, as I had a complicated medical history. Turns out he and others referred to my medical history more than once. He especially wanted to know what "markers" I had and Epstein Barr positive test.

Let us know how it goes.. be well my friend

Jan

[JerryD]

I think you heard very good advice, here. I see you have had 'extensive blood tests'. I am curious, what is your vitamin D level in ng/mL's. It should be somewhere between 50 and 80.

[mtfbwy72]

Thanks everyone for the help. I will def let you know how it goes.

[rdmc]

I don't think I've ever had a neurologist actually bother to ask me questions beyond what I had presented.

I've gotten the best results when I've had someone else go along with me for the appointment.

That's sort of sad. Did those neurologists do thorough neuro exams (i.e. the ones that take 30 minutes not 5 minutes)?

IMO, a good neuro should cover all the bases, because I've had neuros find neurological signs I had that I wasn't even aware of myself. Or ask questions and discover something that I considered normal, but was in fact not normal.

I sure agree that it helps when someone else is there. Usually not the case for me, I usually haven't had someone with me, but lately, since I've had a harder time driving, I've had my husband or sister at a few of my appts. and for some reason it does seem to make the doctor more talkative. Why do you think that is?

[Leeaura]

Can I add my 2 cents as someone who has recently been diagnosed? If your symptoms include numbness and tingling, be sure to stress that. Every medical professional that I saw in my 15-yr quest for a diagnosis asked me if I had those symptoms. They all seemed to immediately lose interest in a diagnosis of MS when I told them that I did not. Good Luck tomorrow!

[BigA]

You're getting good advice here. One thing I always do when I'm paying cash to see a doctor, is to tell them that.

Most of the time, they don't think about money (or do!) and will want to book a followup and an appt with all the staff in their office.

Make it clear that although you have insurance, the visit is expensive and that you want to get the most out of it. If you can do research into which DMD you want to take, you can ask for advice and then decide then and there.

Also, if you need any meds for spasticity or bladder or pain or fatigue or whatever, ask then. Do mention symptoms because you may not know a certain thing you are experiencing is a symptom of MS.

Find out about any groups you might like to join that they sponsor.

Good luck. You're miles ahead of most of us on our first visit.

[mtfbwy72]

Thanks everyone for the input.

Vit D - it's around 20-30 without looking up the test results. I was on 5000 ius daily after blood work after my celiacs diagnosis. It's gone up some since then and now I am on 2000-3000 ius daily along with 1000 ius of B12.

Tingling and numbness, no problem cause I've got that up the butt. Lately my left foot hums a contast tune all day and runs up the leg so etimes with some numb little piggies. Along with lotsa numbness in my fingers.

There was something else I was going to reply to....oh yeah. I have to say I am prepared thanks to my girlfriend who has MS. She has been a huge help. She is the one who told me to go to my primary and ask for an MRI. Plus all the great info here! This place is aweso#me!!

[Leeaura]

BigA

Can you explain your earlier stmt re: asking about groups your MS sponsors. I'm newly diagnosed and don't understand. Thx in advance!

[Ihb7337]

Hope this isn't repetitive

: any appt I have with any doc (including neuro) I take the following printed up:

Med history
Current medications and supplements
Current issues/ symptoms
Questions I have for doc
A notebook to document my session with the doc
And I also bring someone (husb) who is an observer of my behaviors and symptoms that maybe I have forgotten or not noticed
A list of all previous meds and treatments that have been good and bad
List of allergies

And I think that is it. I make a copy for the doc and keep a copy from myself. Helps so much when beginning on this journey of treatment or making changes in treatment

Oh and I bring copies of any previous MRI's, ct scans so they can be compared to more recent scans

Hope this helps. Let us know how you did with your first neuro visit. God bless and sending good vibes!N

[mjan]

I just want to add to that very thorough list just given by IHB7337, that you need to ask the neuro what is your policy if I have a sudden, acute attack of symptoms, new or old. Who do I call, what kind of treatment do you offer for it, and who helps me?

I asked this of first Neuro literally trying to "run" after him down the hall and he turned and said, Just call if you go totally numb. HUH??

So the next MS neuro told me, BEFORE I even needed to ask, who I called, her name, as this RN triages all emergency calls. That gave me relief.

Also, after my MRI was read, this RN called me BEFORE my next appt. to give me the results. They also called ME as soon as my lab results were back and said my Vit D was still not high enough and what their recommendations were for me.

Now I lost that marvelously run MS neuro office, as that neuro had to leave her practice to be with her dying mother.

Guess I will be starting over.. yet again.

Jan