Where to begin?
 

Hi All,

For the past 10 years I've been dealing with all types of random symptoms. Most associated with nerve, muscle, & joint pain. Severe fatigue, chronic low vitamin D levels & weakness are the main ones. I have had periods of what my Dr's refer to as gait ataxia, which also affects my speech greatly. These "flare ups" last anywhere from a week to months at a time. Slowly they improve, and I experience periods with no symptoms or minimal symptoms.

Several times I've been asked about MS. The first time I had an episode I had a host of testing including MRI's CAT scans, lumbar puncture, and all of them came back normal. Since then, I've had several episodes. I have spent thousands of dollars and have seen dozens of Dr.'s and no one can tell me what is going on.

I would like to get a definitive diagnosis, this can't be normal for an otherwise healthy 33 year old woman. They symptoms started slowly 10 years ago following a car accident. I have not been the same since then. I've been seeing a new chiropractor and he believes it's possible that I could have MS based on my symptoms. So I'd like to rule that our or in once and for all.

From what I've been reading an MRI is somewhat of a gold standard for a MS diagnosis... but I'm also hearing that many people have "clean" MRI's for long periods of times, before anything shows up.

Should I have another MRI? What other diagnostic testing should I do? I do not have medical insurance and will have to pay out of pocket, so I'd like to start with the most pressing. if that makes any sense.

Thanks for any insight you might be able to offer.

Hi Joy, and welcome to the community!

Among the doctors you've seen, have you been to an MS specialist? If not, that would be the first thing I would do.

If only MS were easy to rule in or out! You're so right about some people having symptoms long before anything showed up on an MRI.

You'll probably get much more advice and many more suggestions...I'm so tired tonight that my brain won't work! Sorry! Hang in there!

I really can't help but I can relate. I too have not felt well in roughly 10 years. It started out with fatigue and spasticty but I always chalked it up to something or the other. Without going through all the years, I am now dealing with terrible brain fog (can barely have a conversation), urinary issues, numbness/tingling, eye issues, dizziness, electric shocks and so much more. I too have periods where I feel pretty good. I finally told my GP a few weeks ago that this has gotten to the point that I can no longer ignore it. He did a few basic neurological tests (just like the balance etc), and sent me for an mri. It was clean. I have my first neuro appointment next week. Again, we are in the same lovely boat so I really can't help, but maybe we can empathize with each other!

Welcome Joy!

Some places offer discounts for MRI's. Call around and see which place is the cheapest. Do you have a medical school close by? Sometimes you can get a free MRI, although not often, at some of the schools or if a place is testing their new MRI machine. I did that once when I was first diagnosed. The radiology place had just opened a new clinic and needed test subjects. I didn't have insurance at the time and my neuro's office told me about it.

MRI's are a useful tool for getting a diagnosis but they are only part of the diagnosis. Clinical findings are important as well. Some MSers have had a lumbar puncture as part of their diagnosing process. Unfortunately, with MS there is no set test to diagnose it.

Welcome Joy..:):hug:

Thank you for the warm welcome.

I did see a neurologist when my symptoms first began but I wasn't happy with her. Mostly because she seemed more interested in pushing meds that I could not tolerate, and was less interested in finding out what was causing my symptoms. That was my only experience with a neurologist. Sad huh? I'm not even sure what her background was, or even how I ended up in her office. I think my husband must have gotten a referral from the ER Dr. At that time I could barely form sentences, and could not walk unassisted. It was a very scary time.

I have been trying to get medical insurance but was denied by private insurance. So I've applied for the "high risk" medical insurance offered through my state. But since I have no actual diagnosis I'm not feeling confident that I'll even be able to obtain a policy through the state either... sigh.

I'm going to look into finding an MS specialist to see if I'm even looking in the right direction. Something is terribly off, I just wish I knew what it was, and how to manage it going forward.

Thanks again for your suggestions... keep 'em coming :)

I understand your fear and anxiety.:hug:

Good wishes and prayers for you Joy.

Please let us know what your new MS wise Neuro has
to say. Good luck in finding health insurance.

hi joy and welcome,
you can call 1-800-FIGHT MS. you'll be able to get the phone number of your
local MS chapter. call them and ask for some referrals for MS specialists in your area.

there is something called the McDonald Criteria in MS. this is information that drs look for in order to give a dx (diagnosis) of MS. i don't know a link but i'm sure you can google it. that might help.

please let us know how you're doing.
oh...keep a simple sx (symptom) journal with dates and the sx's you have.
drs find it helpful when they do a hx (history) and pe (physical exam).

ps...i like abbreviations. can you tell i'm a nurse?