What should I ask PCP?

[Lulu54]

I see my PCP tomorrow - they called wanting to see me after my brain MRI shows white spots and demyelination (sp?).  I had an EMG done last month and there is definite nerve damage.  I had the EMG after I told the PCP about neuropathy in my leg and drop foot that has been going on for about a year.   Because of the EMG we moved on to the MRI.  

There is a family history (mother's sister) of MS, which she lived with for over 50 years.  I am 53 and a heart patient - had an MI in January, from coronary vasospasms - not blockages.  Fairly rare, but nonetheless I had a heart attack and they say it wasn't my first.  I am a regular on a women's heart board but they have no such active group for MS.  

When I see my PCP tomorrow I am trying to figure what questions I should ask. When I had my heart attack I was shellshocked and it took me several months to realize that there were even questions I should have asked.  I don't want to make the same missteps this time.  

So I thought I would join your community and ask for help -

if you were facing the diagnosis for the first time, what would you ask?  

Thank you all in advance- I truly believe we do make a difference for each other.

Laura

[Lulu54]

That box is running pretty low on kleenex but I didn't use them all....

I didn't have to ask many questions because she was very thorough and spent almost 45 minutes with me and my husband.

So today is my next new day.  Boy, after having a heart attack and beating those odds (2 of 3 women don't survive them) I really was blindsided with this MS ****.  But I am a survivor first and foremost and we'll deal with this too.

I called for the MS neuro appt today and they need a copy of my MRI film - preferably on disk - before they will schedule me.  I have already picked it up from the lab and sent it out in priority mail.  

They have also scheduled the remainder of the MRI's - lumbar, cervical and thoracic spinal shots to go with my brain MRI.  I get that thrill on Monday.

I have a cardo appt first thing this Thursday morning - already scheduled  before this MS dx came up - and dropped off a list of questions to him as well so we can be sure to discuss everything I want to know. I included the question about my heart drugs interactions with muscle disease.  

I'm not that familiar with your forum here yet so I'm not sure if I should post a new discussion or just keep this one going so for now I'll add my question here-

(that long pause was me and my brain trying to remember my question!)  

?? - is chest pain, particular at night a common MS symptom.  I have been treated for variant (prinzmetal)  angina (occurs mainly at night and always at rest)  and Imdur (a nitro drug) worked to stop the nightly pains.  Now that I am under this stress the pains have reoccured.  Anyone have a thought on chest pains that radiate down both arms - sometimes stopping at the elbows and sometimes all the way to the wrists?

Thanks all for the warm welcome,
Laura

[sllowe]

Hi Laura!

How's that box honey? Empty? It's okay to cry, go ahead, have at it.

I'm glad you are moving forward w/your care.  This is a good thing.  What did you end up asking your Dr? How did it go?

Welcome ma'am! So glad you've joined us.  We are here for you.  Ask away w/your questions, we've got you covered!

ttys,
Shelly

[Lulu54]

I guess I am now a new member here to go along with my heart board - my PCP referred me on to a MS neurologist at OSU. It's about a 90 minute drive from here but will be worth it if I understand correctly. She is fairly positive that an MS diagnosis will be easy to make at this point.  I have the MRI radiologist's report and it is full of all sorts of jargon that I haven't a clue what it means.  

I've hunkered down for the night with my box of kleenex and figure I can cry until I run out of tears. Tomorrow I'll figure what I have to do next.

Thanks all,
Laura

[Lulu54]

I hae looked at everything I can cram through my eyeballs into my brain in the past 3 days.  This is happening so fast  - my MRI was late Wednesday - they called me Thursday night for me to come in on Friday.  I am assuming that this is not good since they  were rushing to get me in.  I'm trying to remain calm as I watch the clock count down here - leaving in 3 hours to see the doctor.
Thanks for the wishes and hugs - I need all I can get right now.
Laura

[LLWB]

At the top of the page there are tabs to click. If you go to the health pages, you will find a world of excellent information. Some regarding testing, some about symptoms, etc. Good luck on your appt tomorrow, and please keep us informed, and welcome to the forum. It is a wonderful place to be. I ended up with an MS mimic, but they won't let me leave. (I think I am the comic relief, LOL)

Best Wished, hugs & prayers, Maggie

[Lulu54]

Thank you both.  

This is a relatively new PCP for me - it is a she and I switched to her because she specializes in women health issues and women's heart health.  I am extremely impressed that they called me the very next day after my MRI at 6:30 at night to try to schedule me the next day to see her.  (or maybe I should be really worried about the urgency?)  I was on a short vacation weekend and out of town when they reached me on my cell phone - I was actually standing on a beach relaxing for the first time in ages after my HA.   Unfortunately we had to wait until tomorrow for the appt. since we didn't get home until Saturday night.  I have been reading as much as I can on line and have googled white spots, mri and MS and heart attack in so many combos it makes my head spin.

From what I have read MS is a slow or sometimes impossible diagnosis to make but I do have multiple symptoms.  Its not what I want to face along with the heart disease but I can deal with it.  

Other than my husband, I have told no one so far except those of you here on this board - I want to know what we are really looking at before I tell my elderly parents or our children. My weekend was ruined with worry there is no sense in making others distracted too.

I will definitely be asking about the neurologist referral.   Is there a standard medical protocol that a neurologist would follow for the next tests?

Thanks again,
Laura

[mrsturbo]

I am actually one of the newer ones here.  I have had the non-diagnosis of possible MS since April, and still no definitive diagnosis.  My one suggestion is that you look up the National MS society, or whatever it is actually called, and look at a list of symptoms.  There were symptoms that I had been experiencing for some time that I never would have mentioned to my doctor.  Also as the last post stated this is a very long process and your PCP will be refering you to a neurologist, if he doesn't I would request it.  You wouldn't stay with a PCP for cancer you would go to an Oncologist.  Same here, you need a neuro who has seen this many times.  Let us all know how the appt. goes.  Everyone on this forum is extremely helpful, and here no question is a dumb question.

[Tahiri_Veila]

First tell him everything that is going on.  If you have multiple symptoms over time write them down in a timeline.  It helps a lot.  If he is looking at MS, maybe ask about some mimicers.  Has he done any blood tests? There are a few other things that can cause similar symptoms.  Maybe ask him what you should watch for.  

I am a limbolander and am currently facing a diagnosis of MS or fibromyalgia.  I understand wanting to know right away, but you are going to have to be really patient when it comes to possible MS.  I have been looking for 2.5 years and others here have been searching for answers even longer.  I hope that you don't have as much trouble.

Hopefully others will respond as well.  Good luck at your appointment.

Tahiri

[Lulu54]

Also, I didn't put in my original post - the doctor's office did mention a possible diagnosis of MS, so I'm not borrowing trouble and figuring something out that may not be there.  

Thanks,
Laura