Very lost

[EB3]

I'm so confused. Just over 6 years ago I was diagnosed with MS. I haven't been to a doctor in a few years until today. But I have been doing ok. I get weird symptoms but they come and they go. I was told I had relapsing remitting MS. But this doctor says he treats patients not MRI's. Even though the MRI's show MS and I had a spinal tap and that showed cloudy fluid which seemed to indicate MS. But this doctor says if I haven't been paralyzed or gone blind or something horrible then I don't have MS. Do I get a new doctor or is he right? By the way, my previous doctor also did a whole bunch of blood tests to rule out other possibilities.

[MsmsinFl]

Hi--

I see you are located near Orlando, as am I.

There are many neuros in the Orlando area;  you need an MS specialist.

In my search for one, I found at least three in Orlando worth considering -- one is located in the Dr Phillips/Sand Lake area;  one is near downtown Orlando;  and one in Altamonte.

It's worth a little extra travel time to get the right doctor -- I hope you'll consider expanding your search a little.

[supermum_ms]

Hi and welcome to our little MS community,

I'm actually really hoping you misheard or assumed meaning from what this neurologist said, because otherwise his questionable understanding of MS is seriously going to damage someone!

The good Neuro's often have the mindset of "treats patients not MRI's" but this gets twisted into something dangerous, if he seriously believes a person doesn't have MS unless they been "paralyzed or gone blind or something horrible"........to me that's not treating patients but neglectfully waiting until they are permanently damaged before recognising and treating their MS, which puts him in the bad neuro box.........run!  

You have a significant gap in time since originally being dx-ed and now (6yrs), and i suspect you haven't been on a DMD and not needed medical intervention during a relapse, if you've been doing okay with sx's.  It wouldn't be unexpected under the circumstances for a neurologist to retest, to confirmed their new patients prior dx, we hear of it a lot even when the MSer has been on DMD's for years.

Having your dx unexpectedly questioned can be very confusing and understandably upsetting and most definitely from my perspective, when ever a new neuro decides to revoke an existing dx, it's a huge red flag that someone for some reason, actually got it wrong and misdiagnosed.....I strongly suggest you contact your local MS society, and make an appointment with one of their highly recommended MS neurologists!

Find out if you do actually have MS and this recent neuro was a dangerous neglectful idiot or if the original neuro and dx of MS was wrong and misdiagnosed you some how. Gather together all your (original and recent) diagnostic evidence (MRI's, LP etc), along with any neurologist reports, blood work, visual and nerve tests etc  that supports and questions the dx of MS and get a reputable diagnostic opinion from an MS neurologist you can be confident knows what they are doing!

Hugs.........JJ      

[Lulu54]

Argh!  These kind of professional comments make me nuts.  I hope you will listen to everyone and run, run as fast as you can.... this doctor knows NOTHING about MS.

[SarahL2491]

RUN
RUN

MS can leave O bands from spinal fluid……..this guy has no idea what he is talking about.  Kyle has given you some good advice as have the others!

[kwarendorf]

Hi EB-

Run away from this guhy as fast as possible. He is ignorant and dangerous! COntact the local chapter of the Natl. MS Soc. They should be able to help you find a doctor that knowsw MS.

Kyle

[HVAC]

Everyone progresses differently. I go to the MS Specialist every two years and so far since 2007 things have not changed. I know people who were diagnosed and did not need to see the Neurologist for years then when they were in there 50's things started happening. That doctor is a jerk. Some doctors will not take you as a patient if you will not take a disease modifying drug. I do not take one anymore but I have PPMS not RRMS.

Alex

[essdipity]

I totally agree with immisceo. Your doctor is not only nuts, he's dangerous!

You really should read up on MS, and the National MS Society website is a great place to start. Stick to professional medical sites, as they have the most acccurate info. Our Health Pages here are hard to find, but have great information too. Here is the location--

http://www.medhelp.org/health_pages/Multiple-Sclerosis/list?cid=36&container_name=Multiple-Sclerosis

ess

[immisceo]

Run, don't walk, to another doctor. What you've related as his/her statements may win this particular doc the booby prize. Utter nonsense.

A lumbar puncture (spinal tap) is conducted to look for unique oligoclonal bands. Cloudiness has no bearing on the MS-related results (unless it renders the sample unusable). Typically it's MRIs, clinical exams, case history, and tests ruling out other possibilities in combination that lead to a diagnosis.

A typical, stable patient with MS will still have a specific MS-related check-up annually as there can be subtle changes in disease presentation that a pro can observe even before we ourselves really notice. It's also a good way to monitor if your medications are doing their job or if they need to be revisited.

First task: get a new doctor, an MS specialist if possible. Was this latest doctor even a neurologist?! I'm seriously gobsmacked. You deserve better.