Sorry I wanted to add ~

What works in words and what don't ~ Choice Words
Doc is pretty open and understnding ~ Open
Time line where do I start ~ From the beginning

Any Advise would be Helpful

If you can get some blood work done it may be worth checking your Vit D levels and if low your doc may suggest Vit D supplement.

Go to the MS Society web site , if necessary copy and take with you.

Describe your symptoms here because others will have some useful suggestions. MSers have many and varied symptoms and no two people suffer the same way.

mommie, it seems you will have to help educate the doctor on MS.

What should you take with you? Take a list of symptoms, and the duration and date of those symptoms. Take a copy for the doctor and for you so that you can look them over together. If you list is long, prioritize the listing and only present her with the most troublesome of symptoms. Go prepared with a list of your questions and make sure the most important ones are at the top of the list. Most regular visits last from 15 to 20 minutes, and a majority of the time is usually taken up with the neurologic exam and review of your symptoms, medications and any problems you're having with side effects, Make sure to keep your doctor informed about all the medications (over-the-counter as well as prescriptions and supplements/vitamins). Don't expect your neuro to have time to review a fistful of articles you've printed from the internet. Don't hold back - speak up when you're concerned. Bring an extra pair of ears or a tape recorder.

Since the doctor you are seeing has limited experience with MS, it's a good idea to schedule a yearly appointment with a specialist, even if you have to travel or pay out-of-pocket to do so. This yearly appointment ensures that you're getting the most up-to-date information. There are other benefits too, just think about it. When your MS escalates and interferes with your life: they've seen so many people with MS that they're more likely to have seen a patient whose situation is similar to yours than a doctor who has seen very few MS patients. Additionally, a consultation with a specialist will help you identify ways in which nursing, rehabilitation, social work, mental health professionals, and many others may be of assistance to you.

Your doctor has an important MS resource that she may not even know about. The National MS Society offers a program called MD-on-Call, which allows any physician to obtain a free consultation from an MS specialist on the Society's Medical Advisory Board. All your physician needs to do is call (866)678-7328 or send an email to md_info@nmss.org If you think it may be difficult or uncomfortable to suggest this resource to your doctor, you can get a brochure describing the service for your doc by calling (800)344-4867. You can then offer it to your doctor in case she hasn't heard of it.

What to ask?
1. I would do some snooping on google about early treatment options. I am a firm believer in early treatment to reduce the disabilities of MS. Read up on it, and then ask a question of her on how she feels about starting you on treatment for MS. Treatment for you, if deemed that you are probable MS or possible MS, would not really be considered early for as long as you have had symptoms.
2. Ask how she would treat your "flares" symptoms that last more than 24 hours?
3. How accessible are you?
4. Are you available for phone calls? If I call with a problem, when can I expect to hear back from you?
5. When I call for an appointment, what is the normal wait period for that appointment?
6. Do you use email to communicate with patients?
7. What is your protocol for treating MS? lumbar, thoracic, and brain, with and without contrast
8. How often would you want to see me as a patient?
9. Do you think any type of physical therapy is necessary for a MS patient?
10. What treatment plan do you see available to me?

Sorry this is so long of a response.

sorry No. 7 in the list of questions should read:

What is your protocol for testing MS? lumbar, thoracic, and brain, with and without contrast MRI, Lumbar Puncture/Spinal Tap? Blood work? If your MRI's don't show any change from 2010, you may want to talk the doc into getting a LP/ST.

I agree with all the advice you have been given & Ichoppell has given you great advice that covers lists & how to etc.
The only other thing I would say is I don't know if it's the same there but only a neurologist can actually dx you with ms & start you on the drugs then your local Dr can continue the treatment & follow it with communicate to your local Dr & advice on how to treat etc.

I know you said its a long way & out of pocket too but unfortunately that is the way the system runs for a lot of dx of diseases too. Hope you are able to avoid it but if you want the correct dx you are best to go to a neurologist from what I have learnt.

Take care & see how it goes.

Hi,

1- if you are having visual problems get cleared for other problems from eye Dr, so they send an VEP test, very important.

2- all MRI ,not just brain

3- ask for PT if you have problems walking or with balance

4- speak matter of fact about symptoms, Dr's like it, but I've noticed if I use medical terms instead of describing my symptoms ,they might think I'm making this up, I only use medical terms when I've been dx, like tinnitus, ON, ataxia, etc.

My neuro wants to see me every two months. You might ask over the phone, what frequency It's aprox, so you can make a choice on which Dr to choose.
Keep us posted, Alma

Thank You all for the great advice I've taken notes and I'm trying to put together a gen. list from everything I remember and some notes I've taken along the way.

I've been down on the couch for 3 days now w/ fatigue,flu like sx , and some kind of stomach virus.. I think my daughters cold on top of everything else.. So trying to rebound from that...

Don't know if I said or not I do have IH and do have a shunt .

If I have an LP done, ??? I'm thinking it should not be pulled out of my tubing drain CORRECT ????

It should be done from the spine if it goes that far.

Thanks Ic for all the info I'm feeling over whelmed so ll the info I can get the more helpful it will be...

Been in a rut w/ sx of all kinds and not feeling well I will try to get some of my sx in my own words up so they can be defused maybe .

Orsova you said to chk. my Vit D I have heard of that does it seem to run low for some reason w/ MS pt's.
Another 1 to chk I heard was B-12 , had it chk'ed befor and was alittle low about a yr ago and had a few shots but the old Doc left the practice and I just didnt have them done anymore I'll have her chk that to. AND 1 ( ONE ) more SED RATE how important is it to chk the Sed rate? Do you find the Sed Rate in MS pt's to be higher for any reason ? OR is it always or most always elevated ???

SORRY for so many Questions ! In the next day or 2 I'll work on that list of sx THANKS AGAIN EVERYONE you have all been so helpful & look forward to listing my sx to see what you can make of them. It's been a CRAZY 4 yrs just glad to be getting to the bottom of all of it or I hope.. I know I have yet a longer road ahead....

When I was hospitalized when I was first paralyzed they started to test for MS.
so some blood work you might want to talk to the doc about.
some diseases mimic MS while MS does not have a test that says yes you have MS the other diseases do.
HIV/AIDS
hep A/B/C
B12/ vita D
CBC
Lyme
they took spinal fluid to test for
meningitis/ check for white cells /antibodies/

MRI w/wo contrast .


Bring a symptom sheet. List symptoms that may be caused from other illnesses. In my case all most half of the symptoms from "other" illnesses we now know are from the MS.

Take time to think about what you go through daily. I have found that there are symptoms I have learned to live with & do not think about them much. It is amazing what we learn to live.

Also try to think about your thinking ability. Has that slowed or changed in the last few yrs.
Think about ALL things that have changed in the last 10 yrs.

I hope you find a good doc that can help you.