Update on my specialist appointment (he thinks I have a secondary issue)

I saw the MS specialist yesterday. Since my MRIs have been considered normal all along, and I was diagnosed based on symptoms, I was really nervous that he would take my diagnosis away.

Luckily, he did not. I had an MRI done by his office, which showed one "ambiguous" lesion, and one definite lesion (up until now my MRIs have only shown very small and subtle lesions, so these were both new). He did say that I'm not showing lesions in the expected places, especially for the vertigo I have. He admitted that he thinks I am a borderline case, and if he had been seeing me for the last 2+ years he probably would not have put me on Copaxone yet. BUT, he also said that he is not going to take away my diagnosis because I do show some definite MS symptoms. He is also recommending I continue on Copaxone, which I'm very glad about because I'm a bit nervous of the flu-like side effects the other DMD can cause.

The bad news is that he thinks I have a secondary issue going on. He said that the fatigue and joint pain I've been dealing with over the last 2-1/2 years are not usually MS symptoms. He is recommending I see a rheumatologist who is willing to work with my neuro to find out what is going on. He said that he actually suspects chronic fatigue syndrome or fibromyalgia, and he is thinking most likely chronic fatigue syndrome. So, I get to go through another process of testing to try and get a secondary diagnosis O_o

He has prescribed nuvigil for me to use on those extra tired days. He said I can take it as needed, and it is pretty much just a step up from coffee.

I hope everyone is having a great Valentine's Day!
~Jess

[Lulu54]

Yikes, Jess.  I hate to hear that you may be dealing with more than one chronic disease.  I'm so sorry to hear this.

Keep us posted where it goes from here, and keep taking that Copaxone.

Valentines hugs to you,
Lu

[figuerpa]

But isn't fatigue part of MS? That is one of the biggest complaints so now I am confused lol

So sorry you may be looking at a second dx, keep strong and keep us posted.

Hugs,
Paula

[melo1224]

I heard this a million times before I listened...have you been tested for Lyme Disease?
I have Fibro, Fatigue, IBC, IC, several gastro issues, numbness, tingling, brain lesions (also not specific pattern as in MS) neuropathic pains etc.
My Neuro did some Lyme testing and now I'm going out of state for treatments...if you haven't already taken the time to research it please do it now. The good thing about Lyme is you can improve! Good luck!

[Sidesteps]

Oh Jess, I'm sorry to hear this but at least he's paying attention!! I don't mind going through tests, it feels like we are being proactive.

Take care and happy Valentine's day!

[twopack]

If there is something else going on I sure hope you are able to find out what it is.  Many of the diagnoses the rheumatologists ferret out are as hard to pinpoint as MS.  It seems they have to run just the right test at just the right time - or guess based on history :(

I do think we tend to sometimes lay our symptoms at the feet of MS too quickly and end up cheating ourselves out of feeling as well as we could.  Secondary problems that are easy to treat can provide a period of remission we might never realize as possible otherwise.

Having the rheumy work with the MSologist sounds great too.  Maybe then they won't end up 'blaming' the other specialist's disease every time a symptom pops up.

One thing this doc said sounds pretty shakey (shaky) to me.  Nuvigil is just a step up from caffeine??  Is he kidding?  And that's why it's approved application is to treat narcolepsy?  Does this mean it bridges a person to other stimulants?  

Here's the thing about Nuvigil.  It doesn't really treat fatigue.  It helps a person to not fall asleep in the middle of activities they are supposed to stay awake for - like driving for instance.  You can't use it casually and expect to get away with less sleep.

Sorry.  You probably already know this and wonder why I'm going on and on.  I just get set off by docs who act cavilier about the potent drugs at their disposal.  I hope the Nuvigil works for you as well as it does for me.  I can't function through a day without it and my CPAP machine.  Coffee?  I love the stuff but never kept me awake an extra minute let alone helped me function better.

So, did you ever have a sleep study Jess?  Maybe he thought your fatigue isn't MS related if it stuck around when other stuff cleared up during the past 18 months.  Just a thought to potentially answer Paula's question.

Please keep us updated on how you are doing.  I'd hate to see you disappear so long again.

Mary

[twopack]

How did you feel coming away from this visit Jess?  What did YOU think about what this MSologist had to say?  Anything different now that you have had a few weeks to get a longer view?

I'm also wondering if you have had any feedback yet from the referring neuro who originally diagnosed you.  Maybe your upcoming visit will be your first chance to get his reaction?  Just wondering and hoping you will share.

Mary