Shouldn't I be in limbo?

[tejay]

New here. I just went to the neurologist for the first time almost two weeks ago after a visit to the ophthalmologist for blurry vision diagnosed optical neuritis causing blind spots and a loss of some color vision in my left eye. I also had a few weeks of double vision in Sept and about a week with a numb foot this summer.

After only a short exam the neurologist said I had MS and sent me for blood tests and an MRI. She wants me back Monday to discuss treatments and I guess I'll get the results of those tests then. It just seems to be a really quick diagnosis since so many here seem to be in limbo for a long time. I think I was in a daze when she said MS and I didn't ask as many questions as I normally would. What do you guys think about this?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Thinkimjob]

I'm sorry this has happened to you, but...What you have there is the classic set of symptoms that will get you a MS diagnosis. It's just about straight out of the textbook. And it's hard to argue with the results of a MRI.

You could have a lumbar puncture to be doubly certain, but I don't think the result will any different. I'm not a doctor, so get a second opinion by all means.

I can see why you're a bit stunned, because it's all happened so fast.
At least you can start a dmd straight away, and you won't have to spend years trying to work out what is wrong.

[Marco]

I'm sorry to hear about your diagnosis, but welcome to our community. The blood tests will be used to rule out other diseases and potential concerns with specific MS treatments. The MRI is obviously looking for lesions with characteristics consistent with MS.


Optic Neuritis (ON) is the presenting symptom in 15-20% of MS patients. ON would qualify as "one attack" on the 2010 Revised McDonald Diagnostic Criteria for MS. One attack would be enough to diagnose Clinically Isolated Syndrome (CIS). The National Multiple Sclerosis Society (NMSS) recommends MS medications for CIS patients hoping to prevent or delay "full-blown" MS for as long as possible.

Additional information can be found here: http://www.nationalmssociety.org/abo...cis/index.aspx.


I'm not sure what other information the neurologist is using to diagnose actual MS. My guess is she found neurological deficits during the exam and expects corresponding lesion activity on the MRIs. From what you said, the MS diagnosis may have been premature, but come Monday the picture will be much clearer.

I would certainly begin to write down your questions for Monday. It's too easy to get distracted or overwhelmed and forget to ask something important. What I do is type out the list, prioritize it and then leave space for answers. I print out two copies (one for neuro/one for me) or three if someone is with me and just make notes during the appointment. This keeps me on track. Putting the most important questions first ensures they get answered in case your neurologist runs out of time.

It is very easy to get overwhelmed at first, especially if you try to take a MS "crash course" and read everything possible. Remember to breathe! This journey is a marathon and not a race so pacing yourself is important. I'm glad you found MSWorld early on. These people will cheer for you, cry with you, understand you and walk with you every step of the way. Please feel free to ask follow up questions ... we're here for you.

[milehighmimi]

Same thing happened to my cousin. Optical neuritis is a big symptom, so almost easier to diagnose. All of the other symptoms like we have (I've had mine since February at least), are attributable to so many other things. I think I've had it for at least 10 years but they were clinically "silent".

Memory loss, fatigue were thing I was blaming on work and menopause lol. Tripping on curbs all the time - I was just a klutz.

I still don't know if I actually have it waiting for a diagnosis too. My main symptoms in my feet started after a fall down the stairs. Kind of like the chicken and the egg.

Which came first the symptoms or the fall caused them?

[aspen]

Wow. I'm surprised. Without an mri to back it up, you certainly wouldn't have had a dx yet from my neurologist (ms specialist). Do you have a previous mri?

Having said that, how did the neuro exam go? And yes, although ON can occur on it's own, it is also seen in ms. Along with the the numb foot episode (presuming it wasn't caused by something else), it would APPEAR that you have met DIT and DIS.

However there are SO MANY mimics for ms. You have a journey of bloodwork to navigate first. ON can stand alone, and a numb foot can have many other causes as well.

I'm in limbo WITH lesions lol ... they're not big enough. So yeah ... it will be interesting to see how your journey plays out.

SO sorry you are facing this news so quickly. It is HIGHLY unusual, even if a neuro suspects ms, to blurt it out so quickly as an option (especially before any tests )

[tejay]

It's sudden but I think I'm ok if it's MS. At least I'd know I wasn't just crazy and we'd have options for treatment.

Thanks for all the support here, it's good to hear from other people with the same issues.

I did have some concerns about the doctor (and her communication style) and may find another doctor for ongoing treatment. But I did look her up afterwards and she is an MS specialist, so that makes me feel a little more confident.

[gomer]

tejay............

There things far worse than MS. I am at the other end of the Dx time line. I had become a GOMER in the Navy, problems getting proper medical care while on active duty and worse dealing with the VA afterwards. Decades ago the VA sent me to their shrinks I complained so much. Their own shrinks took my side, not nuts, not even depressed just "adamant" something else was wrong.

I gave up seeking any Dx or answers for decades, that is till a new eye doc opened the proverbial MS can of worms. Of course before the new eye doc in 2009, I had no clue what it could be or what MS even was. once the MS question was on the table it was a whirl-wind of doctors and tests and relatively quick Dx of long standing MS.

I soon started Copaxone and have done well with it. I kinda hit the auto-immune lottery of sorts. MS, psoriasis, and diabetes to name a few. I was Rx'd braces for walking long before the MS question arose. I feared I would be confined to a wheel chair full time before anyone ever figured out what was wrong.

I do use a chair part-time and that has helped a lot. Only took them about 45 years to figure out WHY I started having diplopia etc at age 19! In some ways I am doing better now, in my 60s that I was in my 30s...go figure?

Gomer Sir Falls-a-lot