A multipart question

I was diagnosed a year ago with MS but I haven't been happy with my Neurologist so I made an appt with a Dr at a MS Center and drove 200 miles.  The MS Specialist was very kind and took a lot of time with me. However, when she went through all my documentation she saw that he had done a LP but did not run the MS panel. She called his office to check on it and even called the hospital where we dropped off the fluid to verify it had not been done.. Some other testing and paper work seemed out of line.  She immediately referred me to an MS specialist just 30 miles from my home.  I have an appointment there next week.  How long does it take to get the MS panels results back?

In your best opinion I am leaving for 7 months to go to North Carolina within a month. They have 4 MS Centers there with MS Specialists..  Would I be better off waiting until I go to North Carolina and start there or begin over down here with her recommendation.. I am on no medication except for pain and am going down hill this past year with this old Neurologist..

I would appreciate any ideas you may have.

[SarahL2491]

You did not say how long ago this testing was done
But the lp is no longer the gold standard for ms dx
Many drs do not even order it
You did not say how far from your home nc is
Or why your current neuro did not start you on meds or if you had an MRI done

Based on what you have told us, I'd keep the appt next week but advise them you will be in nc for awhile.  For what it's worth, I've heard good and bad about nc neuro's.

[sllowe]

Hi there,

I too would keep the appt. w/the specialist that was recommended to you.

Nice to hear the new doc was all over the LP (missing) results. My question is... Did she find out they still had your CSF? And, you blood? Labs do not always keep it very long, but since you mention waiting on the panel, I'm wondering if indeed the doc found out the lab still had it. That would be great.

Let us know what you decide.
-shell

[kwarendorf]

Hi Liz - You mention that you are going to be in NC for 7 months. In MS World that's like a nano second :-) With MS, your relationship with your neuro is like a marriage. It is a long term deal. If NC is a long way from home I'm not sure starting a relationship with the neuros there makes sense.

I would agree that you should keep the appointment at home. It can't hurt and it will provide options. If you decide not to seek treatment in NC you have already started a relationship at home.

Keep us posted.
Kyle

[mizliz13]

I have been chasing this diagnosis for 8 years and with my insurance getting into seeing a neurologist took forever. Now with the diagnosis it is no problem. Last year I had the complete work up of MRI, VEEP, and many other tests.  My neuro was one of those who gives you 10 mins and rushes you out. The heat here on the Gulf Coast literally kills me so we spend 7 months a year at our mountain home in North Carolina and I feel better.

The original neuro said he wanted to wait until I got back to put me on medication OR if I got  as sick as I was when I saw him before to go to the ER and have them contact him.  After finding this website I realized that this isn't the way MS is handled for others and I decided to start looking for another doctor.  A few months ago he did an MRI and MRA in his office and it looked nothing like the MRI that I had done at the hospital the year before when he made his diagnosis. His MRI looks like it doesn't even belong to me.

North Carolina is an 11 drive from here. Do people ever have 2 neuros in different parts of the country?

[kwarendorf]

It's possible that people have more than one neuro, but I'm not sure it makes a lot of sense. First of all the only conduit for information between the two would be you. I don;t think you want the added aggravation :-) Secondly, what do you do if they have different opinions?

I think If I were in your shoes I would see what the MS specialist 30 miles from your current location has to say next week.

Kyle

[SarahL2491]

You can have 2 neuros if they agree to share custody of you (sorry, couldn't resist the joke insert)

I travel 465 miles one way to see my neurologist and I won't give him up for anything.  Don't care how far I have to travel.  It's like Kyle said, its a "marriage".  I went thru several before finding this one.

I've also probably been longer than I want to know chasing my diagnosis.  My neuro figures my first flare was in 1981 and I just got diagnosed in late 2011, so some of us (I think there is someone longer than me, Alex, I know) have spent many years and many neuros and many tests over and overl ooking for the right one.

Have you gotten proactive with your present neuro?  Asked him why he doesn't want you on DMD drugs now?  Many feel its never too soon to start, once you have a diagnosis.  When I was diagnosed, I left there with a choice of two drugs.  

My first visit was an hour; each visit now, unless I have complications, is about 15 minutes, and he will do brief neuro tests on areas we have been following,  and I know he times it!  He's very, very busy.  I try and have my "3 problems" list along with any items I feel he really needs to know about and a list of any prescriptions I need refilling or new ones I want.  

I understand your situation.  I too go North in the summer to escape the heat/humidity for the same reason.  We are both lucky we can do that!
My neuro understands and balances my visits but he's just a phone call away if I need him in the summer.  I do not hesitate to have the ER doctors call him if I wind up there (I was there 5 times last summer - all but one MS related)

I definitely, again, say keep the MS specialist appt.  Advise her that you will be summering away, IF you like her/him, they like honesty I find.  Then make your decision.  Either way, you are going to either have to travel or find someone willing to work by phone if you are away from the area.  There again, the trust issue comes in.  

Keep us posted, if you don't mind, we all learn from each other...that's what we do here, we share the good and the bad, we rant, we cry, we share our successes, and our problems.  

[mizliz13]

On a posting some time ago a person wrote that to keep in mind that many neuros tend to specialize in strokes,  parkinsons, and other illnesses. Well my first one specialized in pain managent so I believe that is why he has me on just pain pills and because of my age.  I am 65 but in compiling a medical fact sheet and timeline I realized this started about age 36-39 years old with me.

I was dx with Fibromyalgia in 1991 and was part of research.  This what I have been experiencing  is definitely different and not Fibro.

I really appreciate those of you who took the time to write me an answer.  This website and its members are so wonderful.

[SarahL2491]

well, I was 69 when I was diagnosed, so don't fall for the "age thing" which some neuro's like to quote.  Mine started when I was in my 40's.

Good luck and keep us posted!

[Lulu54]

Mizliz, you have been in good hands here with suggestions.  There are a bunch of us here who were diagnosed outside of the typical age - I was 54 and we have several people like Sarah who weee in their 60's.  I concur about keeping this new doctor appointment - you are due some straight answers from the doctors even if that answer is they don't know.  

Please let us know how this turns out , ok?
Laura

[LadyTammy1063]

Based on what you have told us, I would definitely keep the appt next week. Your new doctor may give you medications to last till you come back, or he may be able to refer you to a doctor in NC for while you are away.. I hope this helps.  Blessings
Tammy

[east323]

Just curious  can anyone recommend a good MS doctor in North Carolina?   I have lots of symptoms, have a referral to a neurologist but also want to make a appointment with a MS specialist.

[SarahL2491]

I would ask Alex (HVAC) as she lives in NC.....she has seen tons of doctors with her multi-condition.