All the symptoms but negative MRI
Hi,
Over the past 10 months I've had two episodes of neurological symptoms: fatigue, weakness, loss of balance, nerve pain, muscle spasticity, etc. Each episode lasted about a month. In the most recent I had ribcage pain that felt like how an MS hug is often described, and my primary care doctor noticed nystagmus in my eyes. She sent me for a brain and total spine MRI with contrast...it just came back clean. I feel so frustrated. Not that I want to have MS, but I want an answer and a treatment plan. I read somewhere that only like 65% of lesions actually show up on an MRI, so I'm wondering if maybe that's the case? Or the radiologist missed something? I was so sure it was going to be positive.
Hi,
! First off, I am sorry you are experiencing these symptoms. Secondly, I think many of our members can relate to the frustration with bein undiagnosed. There's something extra challenging about not knowing what you are battling and how to treat it. So, I get your frustration.
As far as having a clean MRI, well, you can request a spinal tap (also known as a lumbar puncture) to rule out MS fully or to see if you do, in fact, have MS. Here's some more information about the procedure -- https://multiplesclerosis.net/diagnosis/lumbar-puncture. It is frequently used to diagnose MS if MRI results are inconclusive or if an individual is unable to have an MRI.
Also, there are a number of conditions that share symptoms with MS and you may want to have those conditions ruled out as you try to figure out what's going on in your body. You can read about them here -- https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions.
I hope this gives you some ideas as to how to proceed from here. And I sincerely hope you get a clear diagnosis very soon!
Please don't hesitate to reach out if you have further questions; we're happy to help in any way we can.
Best, Erin, MultipleSclerosis.net Team Member.I’m going thru the same thing I have just about all the symptoms there is listed and I wrote everything down I tried to get in with a Ms specialist but you have to have a referral to get in and my neurologist that treats me for migraines and trimeginal neuralgia said my 2022 mri looked normal to her. So she wouldn’t refer me. The last time I was having so many symptoms the doctor did a mri checking for Ms but found a large benign brain tumor. Why want Doctors listen to you when you know something is wrong? Please help!!
I have to get yearly mris for my brain tumor since another one is growing again just small right now but I just had a mri on my spine cause of my upper back pain so I had to get them to send it to my neurologist. There’s another symptom that they not saying anything about. I guess I will keep bugging them till something is done. , ah, okay. That's good news. Well, not that you need to have annual MRIs, but that you are getting those tests on a regular basis and any changes from year-to-year should be caught quickly. I am sorry you are dealing with this tumor issue as well.
And, yes, it's okay to be a 'squeaky wheel' when it comes to your health! Keep bugging them!
Best, Erin, MultipleSclerosis.net Team Member.
Was your MRI done in a T3 scanner? My first MRI was not and they saw nothing. A few months later they sent me for another MRI in a T3 scanner and the lesions were apparent. The technician told me that the kind of scanner used in my first MRI is known for very poor quality imaging.
that's interesting, thanks for sharing that insight. It's always helpful to know what others are learning from their doctors, radiologist and pharmacists. It helps us all learn from our collective knowledge together!
Did you have to go to a hospital or a special facility for the T3 scanner?
Best
Alene, moderator
I live in a large metropolitan area where there are many radiiology facilities so I was able to have one of them locally, at a facility that is part of Johns Hopkins Medical Institutions (JHMI owns a very large percentage of health care facilities in Maryland). The other two were at the "mothership" in Baltimore. I suspect that the availability of T3 machines depends on where you live. There are several private radiology centers in my area that have T3.
thanks for sharing that's helpful information. And that's wonderful that you live close to Johns Hopkins, that's a fantastic medical system, that I know many people will drive a great distance to visit.
Thanks again for sharing your experience and advice to our community here.
Best
Alene, moderator
