Frustrated, in limbo...

[Lb1977]

Hello everyone Last time I posted, I was waiting for my PCP to order a MRI because of persistent neuro symptoms. I ended up having 3 MRIs (brain, c spine and entire spine). Brain MRI was without contrast. Brain MRI showed a possible old lacunar stroke per radiologist. Spine MRI showed syringomelia from T3-T12. Saw neurologist who basically dismissed everything and I hated his attitude. Said "no way" it was MS and basically dismissed all my neuro symptoms as anxiety. My PCP sent me to an excellent neurosurgeon at USC to make sure my syringomelia wasn't the cause of symptoms, which he did confirm; the syrinx just needs another MRI in 3 months. However, he said I needed to see a "good" neurologist, showed me some white dots on my brain MRI and referred me to a MS specialist, also at USC. I don't see her until August 28th (her first availability).
I am so confused by all of this and the ping pong game of back and forth!!

[sardi_g]

Wow, you're really getting the runaround. So glad the neurosurgeon referred you to someone else. Something really needs to be done to shorten the time to diagnosis. I was dismissed for years, now I have a horrible mri.
I hope you eventually get the answers you're looking for but I hope it's not ms.
take care

[22cyclist]

Glad you are going to an MS specialist. They will be able to look at the films themselves and make a judgment about if the spots look like MS or not. Some general neurologists can overlook lesions so it is good you are getting a second opinion.

Hopefully then you will know for sure one way or the other. In between now and then, write down your symptoms in a clear and concise way for the MS specialist so they can look them over when you get there.

Include only those symptoms that lasted >24 hours, and were constant. These qualify for an exacerbation. Include how long they lasted, what if anything helped them go away, and if any symptoms stayed behind.

Good luck and I am happy for you.
Lisa
Moderation Team

[Lb1977]

Thanks ladies. Lisa, I had a question about the duration of symptoms. The majority of my "MS" symptoms lasted from late March through the first week of May and I do have some slight residual issues still, which I will mention to the MS specialist. However, within that time, I have also had two separate occasions where I had tremor in my left hand and one was only last week when most of my other neuro symptoms had already resolved. I don't know how long it actually lasted because it only occurred when I held something in my hand and happened to look over and see it shaking badly. I am sure the MS specialist will still be interested in those sort of symptoms, right (even though the general neuro could have cared less...LOL)?

[MSer102]

I think you should tell the neurologist about ALL of your symptoms no matter how long they last or lasted. If you withhold symptoms that didn't last 24 hours because that doesn't count as a flare then it presupposes that you already have MS and that might not be true. Its the neuro's job to figure out which symptoms mean what so I think you should tell all of your symptoms and let the neuro decide what's meaningful and what isn't. You might have something that isn't MS and if you don't tell the symptoms that last less than 24 hours you could be skipping a clue that the neuro needs to know about.

[Fed Up]

Lb1977, sounds like your PCP 'figured' out a way to get around calling the first neuro doc a "no-good" doc. There should be a list, to refer to, for docs like that first neuro.

Your PCP seems to be 'working' around a, 'bad' neuro doc. Be patient, it is hard to get appointments, to see any docs, lately. The all seem over-booked. Good luck fed

[Lb1977]

Thanks all!

I should have clarified that the Neurosurgeon is who referred me to the MS specialist. I don't know if neurosurgeons are more or less qualified to read MRI's, but he was the one who saw something on my brain MRI, whereas the regular neuro has basically dismissed everything. I am more inclined to believe what a renowned neurosurgeon at USC says, who seemed to actually take time with me to discuss everything.

The stroke that is listed on brain MRI is called "old lacunar infarct" (without contrast) VS "or prominent perivascular space". I am a thin, healthy non-smoking 35 year old woman, so a stroke is very unlikely.

All of my lab work is normal. My PCP also did anti-coag panels to look for other causes of stroke which was negative.