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It's MS. :( And maybe MG.
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It's MS. :( And maybe MG.

I had my first appointment with an MS specialist today.  I had very little hopes of actually get an opinion on the first visit, but feel that I got so super lucky with this doctor.  I wasn't totally prepared for what he had to say, but he didn't beat around the bush and I appreciated his honesty as well as his unexpected kindness.  When I asked if he thought I might have MS or MG (an old idea of a past doctor) or neither/something else, he said he thinks I have MS and possibly ALSO MG.  :(  I wasn't ready for that one.  

I can't say how different this appointment was from appointments I've had before (more than an hour long.. wow!).  Some new parts (for me) to the neuro exam.  And a lot more conversation from both sides.  For anyone in limbo who hasn't yet seen an MS specialist, I'd highly recommend seeing one.  This appointment raised the bar on what I'll expect in the future from neurologists (unfortunately for the rest of them).  I'm not sure how I feel about all of this.  Hearing a doctor actually talk about MS was kind of surreal and it's probably going to take a few days to process.  
19 Comments Post a Comment
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382218_tn?1341185087
That's a lot to digest for a first appointment, especially with the lack of answers you've become accustomed to.  When you're up to it, would you mind sharing the specifics of why he thinks both MG and MS?  Is he ordering further testing to confirm?  I cant recall if you've  said whether you have you tested positive for antibodies against the acetylcholine receptor and the MuSK protein?  To which condition does he attribute your vision symptoms?

There's another member here with a dual MS-MG dx.  Hopefully he can share some insight and reassurance with you.

It's a lot to take in.  Take care and keep us posted on how you're doing.

How was the trip across the pond?
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382218_tn?1341185087
tomas2729 is the member I mention above.  I think there may be a few others as well.
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3054080_tn?1358726456
Wow.  I am sorry for your diagnois(es).  Even though you were looking for answers, I'm sure it still must have floored you.

I am scheduled for a visit with an MS Specialist (who is my current neurologist's mentor and I was personally referred by him) at a very reputable research hospital on March 27.  I am encouraged because the paperwork packet said to expect to be there approximately 2 hours, and to bring all of my bloodwork, tests, scans, etc, which thanks to you wonderful folks on the forum, I have copies of.  I did see an MS specialist when I was first referred due to neurological symptoms, but I think that at the time it was probably premature to send me to one then, which I believe is why he basically dismissed me.

Anyway, the point of this is to say that my Opthalmologist had recommended, based on the results of my eye exam late last fall, that I be evaluated for Multiple Sclerosis and Myasthenia Gravis.

Please know that I am thinking about you and keeping you in my thoughts and prayers (if that is okay).

Hugs and blessings,
Minnie
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667078_tn?1316004535
It takes awhile to process. It took me years really to accept I really had MS even with six Doctors telling me I would be diagnosed with MS. Be kind to yourself. Sounds like a good Doctor.

Alex

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sorry that the news had to come on your vacation trip but glad you had a pleasant? experience with a thorough and nice MS specialist.

Keep us posted, as you know, we all learn by sharing!


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2034625_tn?1392646892
Hey, DV... the trip has been good so far.  Chicago is always nice even if it was sleeting for a few of the days I was there. I've just got to Ohio and the weather's a bit better so far.  :)  

I don't know exactly why he thinks MG, too.  He said something about the kind of diplopia (eye turned in) and light sensitivity.  I had a hard time absorbing and understanding everything he was saying.  (jetlag didn't help)  I had honestly thought that idea was laid to rest, since I was negative for the MG antibodies and had negative reactions to the MG meds, but he's ordered EMGs and wants to revisit that.  

Minnie, good luck on your appointment.  I'll be sending thoughts and prayers back your way that it goes well.  Let us know how it turns out, ok?

Alex and Sarah, thanks for the support.  I thought it would be a relief to hear a doctor say what I've been expecting to hear for awhile now, but I didn't get the relief I expected.  I'm just feeling kind of unsettled about it all so far, like it's not actually real and maybe it could all still go away.  Wishful thinking, I guess.

Answers are answers though and they're what I came for so in that regard, the trip is only halfway over and is already a success.  I've found a doctor that I hope will be my doctor for years to come and that is a huge weight off my back as well.  For now I'm going to try to put aside my worries on the subject and enjoy the coming week with my family and friends here.

Thanks for caring.  You guys are great!  ((hugs))
Laura
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3054080_tn?1358726456
Amazing what they can determine based on one's eyes. I'm guessing we're both considered for MS and MG for the same reason. Mine has to do with light and diplopia too. Thank you for sharing your experience. I will definitely keep you updated as to how my appointment goes.

Hugs,
Minnie
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572651_tn?1333939396
I am so far behind in reading here - I lost the past two days somewhere.  Anyway, although it is heard to hear, I am glad you got the answer to part of this.  It is so much easier to battle the enemy when you know its face rather than flailing away at some unknown demon.

I'm sorry you have joined the club  - this stinks.

hugs,
Laura
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Yeah joining our club stinks as our Lu says but we like you so we are glad you are here to kept us company.  Hopefully our humor and suggestions can help you thru it

Hugs
Sarah
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2034625_tn?1392646892
Thanks, ladies!  It does stink to no longer have the out of "maybe this is just stress and will all go away" as they'd been telling me for awhile, but I am relieved to have answers.  I'm not feeling nearly so bad since my chat with Lulu yesterday.  Thanks, Laura, a million times for that.  You'll never know how that brought me back to earth.  :)

You guys are the best!!!  Hugs
Laura  
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Laura,
Hi, @4 weeks ago, I was thought to have both MS and MG.  I underwent 5 days of IVIG therapy.  It was believed that that it would make both the MG and the MS feel better.  It did nothing.  I finished the 11th and saw the MS specialist on the 26th.  Well, she now believes, without the MG she can't fit all my symptoms into the MS block. therefore she's not sure anymore.  To make matters worse, I must describe how I feel simply awfully, because she wants to do an MRI to see if I have a pinched nerve or a bulging disc.  Today I saw the MG specialist, he had diagnosed me, based off, the single fiber test, I failed.  I did not test positive for MG antibodies and had negative reactions to the MG meds as well.  Well, after the 5 day IVIG and absolutely no improvement. he's "waffling".   I do have a "slightly droopy eye" (the reason, for the appt), and I have a hard time swallowing and now he believes, looking at me today my bottom lids are coming up (the opposite of MG.  I am now to see a neuro opthamologist.
So 6 days ago, I had 2 diagnosis and, I now have neither diagnosis.
so weird
The problem, is that if I don't have the MG, to explain, the non-MS symptoms, then, they can't say I have MS either.
It was so much to digest, and then to go so quickly to the other end of the spectrum, is so hard again to digest.
I do hope your roller coaster ride isn't so up and down.  I wish you well and you will be in my thoughts
Please keep us posted
Maureen

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2034625_tn?1392646892
Maureen, it sounds like you've been on quite a ride.  I can't imagine getting diagnoses and then having them taken away.  I hate it when doctors "waffle".  
What I don't understand is why this would effect your MS diagnosis.  

So far the one thing my doctors have all agreed on was that some of my symptoms are unexplained by MS (my initial leg weakness still can't be tied to MS they say along with the way my eye was sensitive to light I guess).  If these turn out to be MG related, something else, or just idiopathic neurological symptoms, I'd imagine that I'll still be stuck with the MS diagnosis based on tests and having TN, etc.

I hope that you get real solid answers soon.   I know from experience that the back and forth stuff can really stink.  Post back and let me know how it all turns out if you would.  In the meantime, I'll be thinking of you.

Hugs,
Laura
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Laura, I have light sensitivity, picked it up following a bout of ON, and have been in sunglasses, 24/7 as they say,  since 2007.  When I was finally diagnosed, my neuro agreed that it was from MS.  I have another friend who also has to wear them all the time.

Enjoy your visit!
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Thanks, Sarah.  I'm not sure why he connects it with MG in that case.  I personally feel it was the heat more than the light anyway to worsen my symptoms at the time when I had diplopia, but he somehow thinks it was diplopia worsened by light exposure (MG) and ON as well.  I was wearing sunglasses 24/7 at the time and am now fine with my transition lenses.  

I wonder how they can tell the difference honestly between ON or MG light sensitivity,  Or something else for that matter.  I still secretly don't believe I have MG, but I'm going to go through with all the tests in order to rule it out since he seemed so sure of it. Better safe than sorry, I guess and this allows me to just deal with the MS news for now in case I really do have MG. ;)  
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So true, Laura, but its safe to wear the sunglasses, I have to have the shades indoors.  My doctor told me you can damage/stress your eyes by exposing them to excess light when you are sensitive.  I consider it a cheap fix.  I also carry a letter from my doctor stating that I have a medical condition (not naming one to be on the safe side)   in case the troopers on the road get upset that I wear dark glasses at night (they help with bright headlights coming at me!) and I carry that with me and another copy in my vehicle at all times.

Are you going to do more touring in the US while you are here?  
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That makes sense about light stressing or damaging eyes when they're sensitive.  It was nice of your doc to get you that letter.  My husband jokes with me that if a cop ever stops me he'll have to come bail me out of jail.  Hopefully not.  Sounds like you're proactively making sure that doesn't happen to you.  :)

I'm in Ohio now with my family and have lunch and dinner engagements lined up through most of the week before heading back to Chicago and home on the weekend.  I love being here, but am looking forward to home and a nap as well.  :D  
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I wish they would run thorough tests on new "MS" possible patients to see if they have Lyme disease. Not the fairly useless tests from the 2 major labs, but the specific ones from Igenex or one of the labs that specialize in Lyme.

The reason I am jumping in with this seemingly off topic conversation is Lyme presents with most of the same symptoms as MS or other neurological problems and even shows lesions on brain.

My sister sits next to two women mis diagnosed with MS who are now being treated for Lyme. They are getting better after going slowly down hill for years with MS. There are cures for Lyme, where there are not for MS.

I just wish Lyme tests were in the standard battery of tests for MS and others it mimics. I makes me cry to think how many are mis diagnosed.

Sigh. :(

JJ
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2034625_tn?1392646892
Hi JJ,
I actually live in Europe and was tested for Lyme before my first MRI was done.  They tell me that the labs there are reliable and although Lyme does unfortunately present like MS and some other diseases, once it's been ruled out, MS and those other diseases become more likely.  Some of us, unfortunately, really have MS.  :(

Thanks for your input though.

Laura
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3054080_tn?1358726456
Unfortunately with MS, one does go downhill :(

I hope that their Lyme treatment is successful.

It appears to me, based on my own personal experience and that of others that it is very difficult to get diagnosed with MS. One has to meet the MacDonald Criteria.

Not saying at all that Lyme shouldn't be considered, just saying that while there may be some misdiagnosed with MS, generally speaking, there are more likely many with MS who go undiagnosed, and therefore untreated, for years, if ever.

All the best,
Minnie
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