Negative MRI...now what?

[Meg1110]

Hey everyone,

I had a MRI of my brain along with cervical and thoracic spine which were negative. Neurologist said he can't help me... go back to my GP. I've seen two neuros...both said if I had MS it would show on the MRI.

I have been having noticeable symptoms for a year, each "episode" seems to be worse. It started last April with  visual disturbance, fatigue, and stiffness. Followed by numbness, tingling, and pain around my ribs with shortness of breath like someone had me in a bear hug, burning pain in lower back and flank area (down to my hip flexors)...I even had my gallbladder removed. My short term memory is beyond horrible along with cognitive function, balance is awful like I'm always drunk, abnormal sensations, muscle spasms, twitching, vibrations etc. I've had sexual dysfunction as well, and most recently it seems like my bladder is cramping and not emptying completely which has resulted in a UTI and I'm waiting to hear back to see if I have a kidney infection. At times it seems like my bladder leaks drops shortly after urinating. I was checked yesterday for ovarian cysts which I didn't have any yet I'm still having bladder issues. Blood work ruled out Lupus, Lyme, vitamin deficiency's, diabetes, and thyroid problems.

I've had to find a new job because of hazards associated with my occupation and the changes in my vision/body. Due to muscle weakness in my lower extremities (mostly left leg, hip flexors, and my lower back) I'm unable to hike and I have to limit my physical activity or a pay a huge price. A few weeks ago I went for a walk, near the end of my walk my leg gave out and I fell.

So my question is...what do I do now? I've read many posts from people that didn't get a diagnosis for years and I'm not sure where to go from here. I'm so frustrated and lost....

[wonko]

Standard blood tests do not always rule out Lyme.  I won't expand on that point here, but you're always welcome to visit us on the MedHelp Lyme forum:

http://www.medhelp.org/forums/Lyme-Disease/show/148

I'm sure if you even just copy and paste your original message over there, you'll get lots of feedback in addition to the great advice you are getting here.

[HVAC]

I am sorry I know it is frustrating. I finally gave up on a diagnosis after seeing Neurologists through out my childhood. In 2007 my PCP sent me to a Neurologist and I did have a MRI that showed MS and it still took two years to be diagnosed. My first attack was in 1965 and they sent me to the Mayo Clinic but they did not have MRIs back then.

I took me six years to be diagnosed with Cancer. Doctors rely too much on tests and have lost the art of diagnosing.

Alex

[immisceo]

Oh dear. Their comments on MS necessarily showing on the MRI is not true, strictly speaking. A small percentage of people will have 'clean' MRIs yet have clinically definite MS. At the end of the day, MRIs are an amazing and ever-improving tool but they're not the absolute last word. It's still a clinical diagnosis. Agreed; you may want to look into seeing an MS specialist. It may or may not be MS, but it might pay to have an expert opinion.

You might find the following link informative. It comes from our Health Pages section (right side of your screen for more topics. Great stuff over there) http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI?hp_id=161

[Meg1110]

Hi Deb,
No I haven't seen either neuro-opt or opt. I'll look into doing that...thank you.

I went to a MS clinic, thinking I would see a neuro that had significant experience with MS. I hope I don't come across rude, but I ended up seeing a resident...the experienced neuro I spoke to at the end of the appt for 5 mins.

I just wish I knew what this is, if it's not MS. I did have all the blood work done to rule out mimic diseases. Thanks for the info :-)

[Deb61]

Have you seen a neuro-ophthalmologist or ophthalmologist?  Another thought is seeing an MS specialist.  They can run tests to rule out the big mimics.  

I know of a person that was finally diagnosed after a couple of years with Devics Disease by an MS specialist.  She was having lots of problems with her vision, but only had one brain lesion.  I'm not saying that's what you have, but the MS specialist got to the bottom of what the problem was pretty quickly.