Doctors refuse to consider MS as a possibility

[VonTesla]

I have been experiencing symptoms for four years now. After a blush on my mri, 2 lumbar punctures showing inflammation in the spine, and a constantly elevated white count, my doctors have diagnosed me with fibromyalgia and refuse to consider MS as a possibility. This last year I've started experiencing severe lower back pain and my doctors admit being puzzled and having no idea what to do next. My question is why, after having all of the symptoms and having the neccisary tests done, will my doctors not consider early stages of MS as a possibility? Any advice would be greatly appreciated.

[jasstorm]

I am so sorry you are going through this. Are you seeing a neurologist? If not that would be my first suggestion. It took me 5 years several relapses and a million tests before I was diagnosed. It can be a long frustrating process. We r here for you. Good luck

[VonTesla]

Thank you so much for the response and yes. I've been seeing him for a year. He keeps telling me it's not MS but he doesn't have any explication for the symptoms, the scans, or the inflammation they found in both LPs. He's labeled me as a complex migraine and told me to consider a second opinion since he's at a loss. Not terribly reassuring.

[Kimba22]

Hi VonTesla,

Welcome to MS World! I'm sorry that your doctors have no explanation yet for your symptoms. That must be so frustrating and discouraging for you. Unfortunately, even if it is MS (which I hope it's not), sometimes it still can take years to diagnose. MS is diagnosed only after other possibilities are ruled out.

You said your MRI had a "blush" on it. There are all kinds of different reasons your brain MRI shows a lesion. Sometimes, it doesn't even mean anything. MS lesions have a certain look to them and are typically located in certain areas of the brain. Doctors also look for oligoclonal bands in the spinal fluid. Neurologists usually diagnose MS only after a patient has met something called the McDonald Criteria. Sometimes, there is enough evidence for a neuro to diagnose something called Clinically Isolated Syndrome which may or may not one day turn into MS. Sometimes, it just takes awhile for these things to actually show up.

Here's a few links to the National MS Society for you.
http://www.nationalmssociety.org/abo...-ms/index.aspx
http://www.nationalmssociety.org/abo...uid/index.aspx
http://www.nationalmssociety.org/abo...cis/index.aspx

You might also get an understanding of the McDonald criteria after reading Table 4 here:
http://onlinelibrary.wiley.com/doi/1...ana.22366/full

I hope you get some answers to what is causing your symptoms, soon. You may even want a second opinion from a different neurologist. I hope you'll keep us posted!

Best wishes ,

[Thinkimjob]

Good luck. My MRIs look like a Swiss cheese in reverse. Brain matter nice and grey and healthy, but with weird white lesions all over the place.
They've looked much of a muchness for 17 years.
Which leads to the obvious questions, just how important are these lesions in terms of showing progression? MRI really hasn't changed, but I am going downhill faster than a Winter Olympian.

[grammy2many]

I understand your frustration. It took more than 10 years of tests showing "something" was going on other than my lupus before I received my diagnosis 2 years ago (saw positive o-bands in spinal tap in addition to lesions in brain and cervical spine). At that point my neurologist referred me to an MS specialist. I was happy to finally get an answer so I could get busy trying to fight the disease. I'm on Tecfidera now, but I feel if I got the DMD's earlier I wouldn't have progressed so much.....who knows. It is what it is...I'm still walking and have joy in my life so I'm blessed. Good luck with getting your answers.

[J-Bo]

Me too

I kept insisting that it was MS, but everyone kept telling me it wasn't. For 5 years. Sometimes I hate being right.

[EmDpew_7]

Same boat

I'm in the same boat. The meds for fibromyalgia don't work for me. I'm still having spasms, leg cramps, exhaustion and tremors. Everything except a dianosis.

[hdwhit753]

Frustrating

I'm sorry to hear that you are having trouble getting a diagnosis. Too many people report having to go for years before they got a proper diagnosis that they had (or in some cases did not have) M.S.

I don't know where you live, but if it's an option for you, try some different doctors.

After my initial exacerbation, I ended up with a team of six doctors none of whom could agree. They punted me to an M.S. specialist at the state medical school who ultimately made the diagnosis, but never explained it. Since I was still having problems, I went on a quest for another doctor. I eventually found one a few towns over who took the time to explain the MRIs and lab findings and why she was confident they pointed to M.S.

But, for those on this site who are familiar with how M.S. shows up on an MRI, the fact I had to go through four neurologists (not to mention a whole host of their colleagues) before someone mentioned the words "Dawson's Fingers" will tell you just how non-communicative some doctors can be.