Hello Susie! Welcome to the club house.

to diagnose MS is a process, its not a quick jump. Please remember that there are more than 100 diseases that can mimic MS. From a simple B12 def, to Lyme, Lupus, Sjogren, Vit D def, RDS, and so on. It take a while to rule out so many other things before deciding on an MS diagnosis. So, pull out your hat of patience, your gonna need it.

Keep a journal. Keep a symptom journal, and keep a medical records journal.

Keep track of whom you saw, and why, and what were the results.

Many of us found that going to the big boy MS centers were what finally tipped the balance one way or anther. Many require a lumbar puncture, and some can diagnose based on symptoms, and MRIs. It will take more than one MRI during a course of 6 months normally before they will start to talk seriously about whether they do or dont think this is, or isnt MS. There is a ton of blood work to rule out other things as well. Since MS doesnt have a blood test that pops up positive or negative we must rely on ruling out other conditions that do.

For now, try to be patient ( i know easier said than done) and get some rest, and learn to budget your energy. its exhausting to run from MD to MD to MD to blood tests, and to keep up your normal life while chasing a diagnosis. I do hope its not MS. I hope its something easy like B12 for you.

pull up a chair, and hang out. We will wait it out with you.

Hello Susie, and welcome to NeuroTalk!

Some people with MS get diagnosed quickly, others wait for years. I was one of the latter.

I definitely agree with Dej, keep a journal. It is very important. I write down questions for my next doctor's appointment, then directions or advice given during that appt. Also in the journal I keep results of tests, be it bloodwork or MRI scans--and, very important, my meds list. Just anything I can think of that may be needed to refer to in the future.

I wish you the best in getting a diagnosis. And if it is MS, it's not the end of the world and you will have all of us as a support system!

Hi Susie, I went to the Mayo Clinic when I was first diagnosed. I had a rheumatologist who thought it was MS but wasn't sure since it could be other things too -- I had a low grade fever and strange bloodwork (low positive for antiphospholipid antibody syndrome and recent Epstein Barr). Anyhow, the reason I got into the Mayo Clinic is because my rheumatologist directly called the Mayo for me. That put me right into an appointment with the Neurology Dept. of the Mayo Clinic. I believe if you try to go on your own they will start you out in general medicine. You might also consider going to the Mayo in Arizona or Florida. They are also great too and I bet the wait is not as long as the Mayo in MN. I had to wait 3 months and got an appt. on Dec. 26, kind of an off day. Good luck. Keep us posted. I'm sorry to hear of your troubles.
Natalie

Dont forget to update your insurance before you get a diagnosis.

I didnt do that, and now wish I'd gotten better insurance.

Thank you NT friends for your kindness, encouragement, and advice.
I am so glad I decided to post to this forum.
I want to tell you that I do keep a symptom journal and I have excellent health insurance (My husband is active duty military.)
I have also had blood tests to rule out vitamin deficiencies and anti-phospholipid antibodies. The retinal specialist I saw today told me that my visual problems are not due to issues within my eye, but are likely due to problems behind my eyeball.
I also want to tell you that I think I need to be more proactive.
I plan to call my primary care doc tomorrow to ask if he can intervene--help to expedite my neuro work-up.

Thanks so much!

Susie

Bravo Susie!!!

You're on the right track to find answers. Keep at it. Ask you doc(s) to do what they can to speed the process along i.e. finding a suitable doc and then for them to keep in touch with you during the process.

I wish you all the best and good luck and please don't forget ... we're here for/with support!!

Cheers!

Niko

Glad to hear you have good insurance......it's invaluable at a time like this.

I'm also glad you decided to join this group. It's such a source of comfort and support. Everyone here understands what you're up against. It helps to post thoughts, questions or just vent your frustrations here.......goodness knows we all do!! I had little to no understanding of what MS was when I was dx........I'd heard of it but never bothered to educate myself about it. I got a crash course!

Here's a thread explaining what some of the common abbreviations used on the forum are. I was so confused when I first started posting here because I had no idea what others were talking about when they used the abbreviations for certain terms. Hope this helps you!

http://neurotalk.psychcentral.com/sh...=abbreviations

Welcome Susie!

Good advice from the others.

As it can take a while to dx whatever this is, let me add a thing or two. Don't be shy about using any method to help you cope with your symptoms.

It took a long time for me to get dx'd with some of the stuff, and still in ms limbo. So I held off using even the cane. Stupid of me.


I thought, if I don't really have ms, I shouldn't really need these things.

You know, you use meds to tx your symptoms, you use a knife to cut your food. Think of all these other tools the same way, whatever makes your day easier you use it.

The electric carts for shopping, a scooter to get around at work, etc, can save you tons of exertion.

Also keep in mind that fatigue can come and go. I have boughts for months at a time then it just goes away as fast as it hits. My first in fall '02 was one of the worst - I did not have it half that bad in the last year, and you'd think it would progress and get worse, but that's not always how it is.

And I'm glad you found us. It may be good for you to see how varied this can be - no two people have the same journey.


Good luck!

Good Going, Susie. I hope your PCP can get a team together for you.

Come here often and keep us posted..

shes gonna fit right in. I hope she doesnt need to, but if so, I have a feeling she is gonna be fun.

Hang in there