The misteries of MS

[Ayuda01]

Hi. I'm a 26yo White Male who has been having chronic fatigue since mid 2011. After countless exams i was told to have CFS. In this time period I've had an episode of mild left foot drop for about 2 weeks and another isolated episode where my three fingers on my left hand lost strength. I recently started feeling slightly confused/hazy and have some headaches here and there(nothing terrible).
I had a regular head MRI done a year ago which came back normal. I was wondering if it could have missed any MS like indicators since it was done without contrast. Any information would be helpful.

[Ayuda01]

Another general comment -- for those of you who had a delayed diagnosis of MS due to faulty MRI's isn't that terms for malpractice? I feel like lesions can be easily overlooked as artifact and had the radiologist found the diagnosis early enough many lifestyle changes would have been made.

For example- I probably wouldn't be $100k in loan debt due to graduate school.... I obviously would have picked a different profession having known I wouldn't be able to work long shifts, etc.

This is def. a topic worth being discussed, if anything insurance should cover the expense of graduate school :/

[Ayuda01]

Thanks for your reply Kyle. Yes, I'm wrestling with the that currently, do I want a definitive answer? Or do I just want to live in ignorance? After searching some more I found that people with MS also suffer from raynoulds phenomenon which i also have.. Are their any benefits of getting a diagnosis anyway? I'm sure the medication have some good effects but how about for the 80% of MS patients that can't even work? I've always been the working type, I'm currently in school to work as a healthcare provider also. I do have big aspirations but my fatigue is getting in the way of them all. :(

[kwarendorf]

While 3T machines are bigger-faster-stronger, there are far more 1.5T machines in service. I, like many of us, was diagnosed on a 1.5T machine. What's more important than the strength of the machine are the strengths of the radiologist and neurologist.

As  immisceo said, that the first MRI was done without contrast is of little concern. It will be a good baseline reference for the new MRI.

Everyone's symptom history is different. While there are large areas of overlap, every case of MS is unique. Seemingly unrelated symptoms from long ago are often connected by MS. My history started 20 years before I was diagnosed, I didn't spend the 20 years looking for answers, more like blissfully ignorant :-)

Keep us posted.

Kyle

[Ayuda01]

Thanks ren.

I looked up some MRI's used for MS and found 3 Telsa and 1.5 Telsa, I'm assuming those are the best (3T being top)

Thanks for your encouraging words

[rendean]

Hi!
I just wanted to add my welocme and encourage you to find a good MS  neuro to to do a thorough exam and order an MRI per MS protocol (3 mm slices vs, 5mm on a regular MRI) with and without contrast.

You deserve a good medical work-up before being handed a chronic fatigue diagnosi.

Wishing you the best. Don't forget to be a good advocate for yourself. If you aren't no one will be,unforunately.

let us know how things are going.

Ren

[Ayuda01]

Thank you for your reply.

Can you tell me how your symptoms started? To be exact I remember it being 2010 and i had this sore ache in my neck, which went away with some chiropractic adjustments. But then came back and was just a dull ache which is why I ended up getting an xray and mri. The xray showed that my atlas/axis was sitting slightly crooked so we attributed the discomfort to that. Since my have flat feet/ am tall, its not hard to believe.

The following year was okay although I felt a little fatigued for 1-2weeks in september 2011. That went away until May 2012 when it hit me very hard and then from then until now I have been at the same level of fatigue. I am in great shape, there is no reason for me to be tired. I am not depressed and have a lot going for myself. Which is why its troubling.

The foot drop happened around Fall 2012 but i was running a mile a day which is when I thought i over worked my muscle causing it to to inflam. The drop wasnt terrible but I could notice it. Later in the year (attributing my finger weakness to my cervical spine issue) i had week thumb, pointer, and middle fingers on my left also.

Thanks for your help! I plan on seeing my GP or Neurologist soon

[poytress65]

I've been years in the same position as you and it is terribly frustrating to not have them believe you!! I had three MRI's done. First was with contrast - testing because of "eye pain". There were lesions present on this one. After neuro consult and 2 more MRIs within 5 months (no contrast this time), there were "changes" as in more lesions. "Sorry to tell you, you have MS" was my last appointment with Neuro two weeks ago and today I started Tecfidera. I'm 48, with two children and all my chronic pain complaints/numb and tingling etc was defined as "overweight, depressed woman with nothing wrong with her". All I can say is keep plugging away. You are the only person who will advocate for yourself and that is tiring!! The best of luck and yes, as others said, don't give up and get another consult with another neuro if necessary!

[Ayuda01]

Thank you all for your responses, I did go to a neurologist but the MRI was ordered by my GP. I just feel like they think im a hypocondriac. It's pretty annoying given I am also in the medical field, the rule of thumb is to just believe your patients until proven otherwise.

Thanks again!

[immisceo]

Don't worry too much about having had the MRI without contrast. Lesions will show up without contrast (with variation in accuracy depending on the strength of the machine and the thickness of the 'slices' used to image the brain). Contrast is just used to help determine if what they're seeing is indicative of current lesions versus those older than roughly 40 days.

I agree with -B. Time to find a neurologist if you haven't already.

[MommyofNatTyZach]

I agree with Guitar_grrrl to go back and get another MRI make sure they do it both ways.

Have you seen a neurologist? Or did your family dr order the MRI. It may help to get into a neurologist if you haven't seen one yet.

Hope things get better soon!

~B

[Guitar_grrrl]

Hi, there, and Welcome!  It sounds like you do have neurological nasties going on, and I'm sorry you're not feeling great!  If I were you, I'd go back to your neurologist, and get a repeat MRI with contrast.  Your neurologist may be waiting for you to have this further episode to establish "Dissemination in Time", and "Dissemination in Space". MRI can help establish this, as well as the time between episodes and new symptoms.

Do have a look at out Health Pages (links on R side of this page).  They're chock full of all kinds of interesting and useful information.

Check back in with us, and let us know what happens.
Cheers,
Guitar_grrrl