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  • TheBillLarson
    So I saw my neuro for a follow up today, and got far more questions than answers. Three months ago he diagnosed me with RRMS based on two separate and unrelated major neurological events and abnormal CSF. Todays visit was ironically well timed as over the last couple weeks I have had increased pain in and around my left eye and constant redness (episcleritis) so since he is a neuro ophthalmologist it worked out well. After doing some tests and reviewing the data, it seems that there may be a bit of suspicion of a different diagnosis than MS - sarcoidosis. He's not recanting the MS diagnosis at this point, but what he is seeing with my eye isn't common with those that have MS; he said of the few hundreds of patients of his that have MS, exactly one of them have episcleritis due to the MS. Not impossible, but rather unlikely.

    Here's the kicker: for both MS and sarcoidosis, I am lacking one very significant and common attribute of each. For MS, the missing attribute is lesions on my brain and/or spine. For sarcoidosis, I am completely missing the most common symptom of breathing problems, as the disease most commonly impacts the lungs first. This diagnosis wasn't even on the neuro's radar until now because I never had any episcleritis until now. It is possible that the episcleritis is a precursor to another relapse (I learned that it takes Copaxone 6 to 8 months to have an impact on delaying MS) though as previously noted it is pretty rare. It could also be a part of sarcoidosis, except the eyes are typically not where sarcoidosis begins. I have none of the other symptoms of sarcoidosis either, whereas I do with MS.

    So, I now join the ranks of the others here in limbo regarding diagnosis. My neuro is not dismissing the MS diagnosis, and as he puts it is "suspicious" of the potential of it being sarcoidosis. So more batteries of tests will need to be run, as well as a chest x-ray next week. Tuesday. I remain on the Copaxone, but have now added some eye drops to use 3X a day until I follow up with another ophthalmologist that is a colleague of my neuro ophtho on Tuesday as well. He apparently has more experience with sarcoidosis than my neuro, so that is fine with me. I actually met him today when my neuro brought him in to consult during my appointment.

    So, now I sit, continuing to stab myself 3X a week until more difinitive answers are found. I can't say I am thrilled about this, but I would rather get it right and do what I got to do and go from there. I'll join the hurry up and wait club if you will have me.
  • 2_inspire
    Sorry to hear this Bill. The unknown is so frustrating, I'm sure.  Praying you get answers soon.

    Jenn
  • TheBillLarson
    Thanks Jenn. Hopefully clarity will return soon. I never got to bring up the Vitamin D Protocol given the new plausible direction.
  • 2_inspire
    Hi Bill,

    I'm sorry you're having to deal with all of this.  I don't know you're story, but have you ever been on Avonex?  Sarcoidosis is a rare side effect of Avonex.
  • 2_inspire
    Hi Bill,

    I'm sorry you're having to deal with all of this.  I don't know you're story, but have you ever been on Avonex?  Sarcoidosis is a rare side effect of Avonex.
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  • cjtmn
    Oh no!!! I am so sorry to read this. Neuro-sarcoidosis was the last illness they ruled out for me. I did not have classic symptoms, but instead had elevated ACE levels and one of my cervical spine lesions is a bit larger than typical for MS.

    Chest CT scan was clear. I will pray that whatever the Dx for you, it becomes clear enough that the doctors can treat it. These 2 illnesses have very different treatments (at least that's what I was told).

    Thinking of you,
    Cheryl
  • TheBillLarson
    Thanks Cheryl. This wasn't even a consideration until today, because I lack the classic symptoms of sarcoidosis. So who knows. I have a follow up next Tuesday and a chest X-ray will happen then.
  • JenH
    Bill, I just looked up sarcoidosis & I have many of the symptoms listed, so I'll be asking my neurologist about this being a possible diagnosis for me as well, as far as I know it's one thing that's not on my list of possibilities. Thank you for posting, though I'm sorry that it puts you back in limbo. Praying for Dr's to have wisdom in this & to give you the correct diagnosis. 
  • maria1
    Are you on a really good probiotic? You may want to increase the dose to am and pm, and for lunch too. If you have sarcoidosis too, you will definitely want to make sure the plumbing is eliminating at optimum levels to help get rid of the infection. I hope it is just dust in your eyes.
  • plaquemom
    Oh man I'm sorry.
    im sure you have been tested for sorjens?
    from my four years in limbo I am learning that when it comes to so much of this stuff- docs just don't know....there are so many things that kind of present together or similarly when it comes to autoimmune....
    im so sorry.  I know it sucks.
    pretty awesome that your neuro is also an optic specialist though - sounds like a good person to be with at this time.
    not sure if the eyes cause you pain or are dry.  A simple trick (check with doc) is to run very hot water over a washcloth, wring it out and place on the eyes.  Gets circulation going there and can help with dry eye and eye pain.
    also if approved by doc, try refresh liquigel eye drops during day and the same brand ointment at night.  Relieves painful dry eyes.
  • TheBillLarson
    I don't know what all I have specifically been tested for, but I know they now want to do some more testing. As I mentioned earlier, scarcoidosis wasn't even a blip on the radar until now, because absolutely none of the classic symptoms of it were present. My neuro ophtho even called in an ophtho colleague to take a look and discuss what they were seeing. Talk about feeling weird; they were talking to each other in the language of ophthalmology which might have well been Greek for all I cared. Post consult my neuro ophtho translated what what discussed into English for me, which essentially is that he is not recanting the MS Dx but is suspicious of sarcoidosis. On Tuesday I am supposed to get a chest x-ray (since the lungs are the most common and classic place for scarcoidosis to be evident) and then also see the other ophtho (the one my neuro seeked for consultation) to address the episcleritis and further investigate the sarcoidosis from the optical perspective. Not sure if he will have the chest x-ray results that fast though.

    I am very thankful that I was referred to the neuro ophtho that I have, since he covers both specialties. Something is seriously FUBAR with my left optic nerve, evident in the lesion found on it. The current issue of episcleritis is more evidence. Now the question is what is the cause. MS can cause episcleritis, but it is uncommon. It is uncommon for sarcoidosis to present anywhere else (particularly in the eyes) without having first presented most commonly in the lungs. 

    Dryness isn't an issue for me, though I have been doing the OTC Refresh (I think that is the brand) drops. There really isn't much difference with or without the drops. My neuro Rx'd me some eyedrops for the episcleritis, of which I completly forgot about taking 2X today (I'll get the 3rd one in before bed). The pain I feel is more like socket pain, around the whole eye, and sort of an ache type pain. Moving the eye generally doesn't increase the pain, but it can. We shall see what Tuesday brings as to where we are going from here. My neuro is usually off on Tuesdays but is planning to stop by around the time they tell me to come in. I don't have an appointment per se; they are planning to squeeze me in as best they can. That itself tells me this probably isn't something to delay, so my new job that I have had for about 3 months will have to deal. 

    I have yet to write/blog about the recent new information, mainly because I am still processing it and I will be (or should be) getting more on Tuesday. That and there is enough going on in life in general that for as much as it truly impacts my life, I don't have time to focus on it much. Though I might just do so now.
  • maria1
    Your attitude sounds good, keep it going. They are all looking at you, like show and tell. It is fine they are all consulting. Try not to expect too much. This sounds like a long drawn out event. I hate those. Remember to take care of yourself. I was serious about the probiotics. Hope you have some peaceful time and good results. best wishes maria
  • TheBillLarson
    Thanks, Maria. I'm going to post a new topic with the update, which really is just a hurry up and wait.
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