MRIs not matching active symptoms?

[charrington31]

Anyone experience multiple symptoms, especially severe tremors in extremities but MRIs do not match your active symptoms?? My MD says to just keep rescanning and “wait until it gets worse” ?? I’m definitely not ok with this decision but am I being crazy? I don’t really know what others options I have.

[kdali]

Wait until it gets worse to do what? 🤔 I don’t have severe tremors. Of course you’re not crazy for wondering if there’s anything else!

[charrington31 in reply to kdali]

I’m assuming to give a definitive diagnosis?? I’m not sure. When I questioned them, I was shut down and made to feel like I didn’t know what I was talking about. Contacted another MD to transfer to, but won’t be able to get in until June.

[kdali in reply to charrington31]

Oh, ok! I hope you get some clear answers in June 🙏

[DM0329]

Unfortunately, in my experience, MRI scans rarely correlate with MS symptoms. For me, I was dx in 1994, but didn't start tx until 1997 (diagnose & adios back when dx at age 25 in 1994).

I had "a few white spots" on my MRI and was told "positive things" about young women and MS, etc., and told that I don't need to see the a neuro regularly etc. What? So glad things have changed with treatments and more knowledge today!

My 1997, follow up MRI showed substantial disease progression. An "eye problem" sent me back to the neuro three years later. It wasn't my eyes but a LESION on my THALAMUS. I was TOLD I WAS LUCKY THREE TIMES!!!

Three years later, my scan had changed. Many more lesions. Told to start Avonex as soon as possible. I did in September 1997. I continue it today. It hasn't failed me. But, I have many lesions, black spots, etc. Silent progression.

Now, I am turning age 54. I feel this MonSter daily. I "medically retired" due to mostly fatigue and cognitive sx (but I worked 20 years since my dx and completed my Masters Degree too). Slow steady progression. But, my MRIs have been stable since 1997.

Progressive diseases progress. Sorry.

Hang In There!

🙂

[Frances_B]

You've written "but MRIs do not match your active symptoms" - what do you actually mean by this? What is showing up on your MRIs? Are there any lesions? Do you actually have an MS diagnosis or is the lack of one what's causing you concern because you're sure you do have MS? Tremors can have other causes apart from MS - has your doctor done any tests or checks to see what else might be the cause? Has your Vit B12 been tested?

Also, you write about "multiple symptoms" but haven't elaborated on what they are.

When you say "MD" are you referring to a PCP/GP, or have you seen a neurologist? You can ask for more detailed explanations and reasons for your current doctor's advice. If that's not satisfactory, you may just have to wait until you can see the new doctor (are they a neurologist or???). Seeking another opinion from another doctor is the most frequently made suggestion from people here when someone is not happy with the advice they've been given, and if the wait until June is a worry to you then you may need to keep trying to find one who can see you sooner.

[charrington31 in reply to Frances_B]

My symptoms are tremors in arms and legs, numbness and tingling in feet and RT side of face, previous visual incident where I had an episode while driving my daughters to school where my RT eye lost vision then looked as though I was under water, that left me with a peripheral gray spot in RT eye, spasms and jerking of extremities(similar to when I had restless leg while pregnant). My MRI shows a few lesions but they are small so the neurologists Nurse practitioner(I have only seen the NP not the actual MD) says since there are not a significant number of lesions that instead of beginning any kind of treatment, they think we should just rescan every 6 months-year until the lesions increase.

[bxrmom in reply to charrington31]

I would ask for a 2nd opinion to an MS specialist if possible (if you were diagnosed with MS). Most Drs recommend starting treatment ASAP so you can keep the lesions to a minimum.

[BettysMom]

What is the point of scanning over and over trying to find a fit with your tremors? Tremors have multiple causes and MS is not a frequent cause of serious tremors until the disease is advanced. Parkinson's disease, Lewy body disease, familial tremor, essential tremor, dystonic tremor, medication induced tremor, etc., need to be considered. The cause of a tremor is not going to be found on an MRI. You need a doctor who has some knowledge of neurology!

[Juleigh21]

Sounds like a doc change is a good idea. My body “vibrates”. Sometimes it feels as though electric shocks runs through it. Gabapentin and I are good friends. Are you on it?

[charrington31 in reply to Juleigh21]

That’s exactly how it feels. I’m not currently on that but I work for an orthopedic clinic and our Spine doc prescribes it frequently. It works well for his patients with chronic nerve pain.

[mrsmike9]

I wonder why he wants to wait! That seems really odd.

[pamgarner]

my neurologist told me you can have new and different symptoms with no new lesions and you can have new lesions with no new symptoms,again ms is a disease of confusion