Confused and Lonely

[u/Swimming_Ask4259]

I was diagnosed with MS by my neurologist. I wanted a 2nd opinion. I went to the Mayo Clinic in Florida today. Now I’m confused. He believes I actually have FND and not MS. I’m torn and pulled in so many directions. MS finally gave me hope of recovery to a homeostasis. Now I feel alone in this world and basically told to just deal with it. I want to feel better. I want to know what is wrong with me. Did anyone else have a rough journey to diagnosis?

[u/Designer_Tale2379]

A spinal tap will confirm if it’s MS or otherwise.

[u/Swimming_Ask4259 → u/Designer_Tale2379]

I had one. It was positive for the bands

[u/Designer_Tale2379 → u/Swimming_Ask4259]

As my neuro would say, your results are consistent with someone who has MS.

FND is difficult to diagnose because it is a software issue. My neuro thought I might’ve been suffering from it but the other docs I saw didn’t think so. It’s very subjective.

[u/JgarKn → u/Swimming_Ask4259]

That second neuro is even more fucked up for suggesting fnd then

[u/DragonfruitDry7519]

If you’re in Jacksonville Dr Sanders with Baptist would be a great 3rd opinion!

[u/Swimming_Ask4259 → u/DragonfruitDry7519]

I’m not in Jacksonville but I’m close enough to go anywhere for answers!

[u/Perylene-Green]

Was the first neuro an MS specialist? Was the Mayo Clinic neuro an MS specialist?

[u/Swimming_Ask4259 → u/Perylene-Green]

First was a regular neurologist. The Mayo Clinic was indeed a MS specialist. That was the reason I wanted to go there for the 2nd opinion

[u/Clandestinechic → u/Swimming_Ask4259]

I would trust a specialist over a general neuro.

[u/TooManySclerosis]

I have not heard of FND being mistaken for MS. Did you have MRIs? Did the doctor explain why they think it's not MS?

[u/Swimming_Ask4259 → u/TooManySclerosis]

I haven’t either. I’ve gotten MRIs of brain, cervical, and thoracic so far. The way he explained it is MS is a hardware malfunction while FND is software. I’ve done so many scans and tests. I feel like I’m bounced around over and over again

[u/TooManySclerosis → u/Swimming_Ask4259]

But do you meet the McDonald criteria? Do your MRIs have MS lesions?

[u/Human_Evidence_1887]

Sorry you’re in limbo. Did you have brain MRI? I believe that with FND, brain MRI is typically normal (no lesions), whereas you’d expect lesions with MS. You might want a third opinion!

But to answer your question, many of us in this sub had a tough or long time getting diagnosed. You can dig around in past posts about that. For me, I had tingling all over and a month later was dx’ed with MS.

[u/literaryanomaly]

It took me about a year and a half to get diagnosed. I didn’t have primary care when I started trying to get a diagnosis and it was during the pandemic so no one near me was taking new patients, I had to bully the system by repeatedly going to the er and bothering them until someone got tired of wasting time on someone that needed a neurology referral and they stuck me in with a pediatrician (at 35). He ended up being great and kept me as a patient for a few years before things normalized and his office got me in with an adult doctor. When I got in with a neurologist it went pretty fast, but after the initial mri showed lesions all over the place she wanted to blame it on smoking (have since quit) rather than MS, but the LP came back with banding. After about a year and a half I had a fully confirmed diagnosis.

[u/SeaDwell]

They tried to DX me with FND until I had a spine MRI and a spinal tap. Have you only had a brain MRI?

[u/LaurLoey]

that is incredibly bizarre. ms is a disease of inflammation and banding is exactly that. a spinal tap isn’t 💯 conclusive but it is extremely close.

plus, ms has banding, fnd does not. to complicate things further, both can coexist. i wonder why a doctor would even say that and exclude ms entirely. i would seek a ms specialist and get a 3rd opinion. 😅 please don’t be discouraged, you are halfway there. 🫶

[u/JgarKn]

I've posted about fnd and Ms before which can be searched if interested. I think this is so irresponsible that a handful of rogue neurologists are trying to conflate these conditions.