The Unexpected
Sometimes you expect one thing and get another… especially when living with multiple chronic illnesses. I finally saw the Sjogren’s specialist at yesterday. He spent a good 40 minutes pouring over my records and taking notes on them. He listened to my insanely long list of symptoms.
The interesting thing is he came to the conclusion that Sjogren’s probably isn’t my main diagnosis. He really feels that I have some sort of autoimmune neurological disorder going on causing the seizures, episodes of paralysis, tremor, severe pain upon standing that has me in a wheelchair, motility problems, bladder problems, memory problems, and recent facial drooping and uneven pupil dilation. He thinks the Sjogren’s is secondary to whatever is causing all of that.
He’s going to be coordinating with my normal rheumy to get me a lot more specific tests to work me up for this and try and figure out if this is originating in the peripheral nerves, ganglia, or brain. He said he suspects that it is probably in both either the peripheral nerves or ganglia and also in the brain. He also probably wants to me travel to John Hopkins to see a neurologist specializing in this there. He said my case is one of the most unusual and complex and in my situation I need to go to the top doctor even if he or she is located on the other side of the country.
I’m not totally sure what to think and am still processing this. I went to him expecting to discuss other treatment options for Sjogren’s and am now going to be pursuing an alternative primary diagnosis instead.
I’m also feeling pretty scared. I feel like I’ve been thrown back out into unknown territory again. Back trying to tread water in the deep end of the pool. I also know that the kind of disease he thinks I probably have is not something that is good to be diagnosed with. I’m also frustrated that no one has really seriously pursued the neuro stuff thus far and that I had to drive 3.5 hours to see a Sjogren’s specialist to figure that Sjogren’s probably isn’t my main problem. Sigh.
I guess part of it too is that another whole year of my life has rolled by… I just turned 26… and now we are back at trying to diagnose me again which means its going to be even longer till we can start a treatment other than prednisone again which means its going to be even longer before I have some hope of having some semblance of a “normal” life back again. Maybe its because it’s that time of the month right now as well, but I’m just feeling really upset and like this is a step backwards. I know intellectually it is really maybe FINALLY a step in the right direction, but it sure doesn’t feel that way right now. I’m 26 and I want my life back. I’ve been too ill to have a “normal” life since I was 18. I’m just so tired of it all.
I guess the worst part is the not knowing what’s going on or what to expect. If the doctor were to just tell me I’m going to be stuck in a wheelchair for the rest of my life at least I could learn to live with that fact. But I don’t have any facts right now to learn to live with so I can grieve and move on. Yes I suppose that’s the worst part of all.
I feel so lost right now I don’t know what to do with myself really.
In the meantime, my mom and I are staying at my grandma’s since she lives by this new Sjogren’s specialist which was 3.5 hours away from where I live. We’ll be driving back on Wednesday. The Sjogren’s specialist said he’d get back to me in about 2 weeks – after he has a chance to talk to my current rheumy and review all the neurological testing I’ve already had done, so that we don’t repeat any tests unnecessarily. Then there are a bunch of specialized neuro tests that I’ll need to have done either around here or at Johns Hopkins.
Intellectually I know this is a good thing and that finally getting the correct diagnosis will lead to the right treatment that will eventually get me healthier and able to live more of a life. Right now I’m just feeling kind of depressed about the whole thing. I’ll be okay though. Just takes a little time to process all of this.
In the meantime I’m staying more than busy. I’ve been continuing on with National Novel Writing Month where you try to write a 50k word novel in 30 days. So far I’m at about 12k words, so I’m doing fairly well. I’ve been letting a handful of beta-readers read along as I write it, and the feedback has been extremely positive and motivating for me to keep writing. I’m also working on designing two online games and working on a huge needle point. So at least I’m not bored. 
It all really comes back to maintaining hope. Emotionally this has been a bit of a setback for me because I was expecting answers and got more questions. But I choose to maintain hope that this will lead me to the right treatment in time. Ultimately I already have whatever I have. The diagnosis — the label — won’t change that. I am learning to live with whatever it is regardless. And I have faith in myself that I will get through this. As long as I don’t loose hope I haven’t really lost anything. There are always new options and opportunities I can make for myself if I remain hopeful and open to them!
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I am so glad that he was so thorough, and concerned with actually paying attention to everything going on with you. It’s sad to hear that you are in diagnosis limbo again though.
I hope you get some answers quickly so you can grieve, accept and make changes to your life as needed. Keep that hope going, and you’ll make it through whatever is coming. ((Hugs)) And of course your friends are around to help you through as well. 
Hi Lauren I’ve not written you before but I have been reading your blog since a friend pointed me in this direction. I just wanted to say that I admire your attitude and strength to all that you’re dealing with health wise, I understand being in that diagnosis limbo place too and all that goes with it and I hope that this Dr can find out what’s going on and give you some real hope treatment wise. Hang in there Lauren, this may well be the way forward and I’ll be continuing to follow your journey. Your writing inspires me & I love the way you keep busy with so many varied hobbies. I’m off to read about your novel now. Take care, Gilly x
I especially appreciate your closing image of the door ajar. Opening? Or closing? From your point of view which you so generously and eloquently share I know this is an opening door. And look at those enlightening rays spilling over to this dark side of things. This is a picture of what I have come to know as your day-by-day overarching attitude. Since the day I met you. Sometimes going forwards looks like going backwards. But it’s just an illusion for one as you.
Lauren, just to say I am thinking of you and hope that this new road leads to answers and good treatment. I myself go to Mayo Clinic finally on the 24th after a neurologic event, and like you, am infuriated that the medical community is finally paying attention to my symptoms I have been reporting for years, but have been brushed aside. I don’t want neurologic involvement in my AI journey, but if it’s there, let’s get on it.
You are most admired, take care ~~ Cathy
Lauren,
I am sorry about your frustration and disappointment.
These are certainly understandable feelings given what you expected going in to the specialist appointment and what you were told during it. It must make you apprehensive to be sent out of your area for care. Anyone would have anxiety over that, I think.
The good news is you’ve been referred to a center with an excellent reputation (Disclaimer: I don’t ever endorse any doctors or centers but Johns Hopkins is a generally recognized center for high quality health care), the doctor seems to have listened carefully to what’s happening, and this may truly be for the best in the long run at getting to the bottom of what’s happening. If the doctors can pinpoint what the cause is (whatever label they end up using for it), they will have much better luck at managing your symptoms the best way possible. While they may not be able to cure whatever it is, you’ll have that peace of mindful, hopefully, of knowing what you’re dealing with.
I know you are anxious to get better and this is a blow time-wise to what you had envisioned for getting things to improve ASAP.
I’ve been chronically ill since I was 13 and I’m 40 now. What started as one chronic illness has grown to a list far too long for me to recite by memory. I have to keep a list of my illnesses in my computer and update it every time I get a new diagnosis so that when I have doctor appointments with forms to fill out, I can just say “see attached”. This saves me an enormous amount of energy and time since some of those medical history forms would take hours for me to fill out otherwise. But I digress.
Many of my conditions are autoimmune and I also have some serious neurological problems. So, I can really empathize with you. It can take lots of time and determination to find the right doctor or team of doctors.
While your disappointment at the outcome of the appointment is totally understandable, it sounds as if that doctor might have really done you a huge service. Rather than use you as a guinea pig and try things randomly like some doctors do, rather than refer you to another specialist closer to where you live, this doctor is taking the somewhat rare jump of directing you to a center where he believes you’ll get the best care.
It may be inconvenient, scary, and even expensive but if they are able to help you improve your quality of life and, hopefully, help you manage your pain… it will be worth it.
Hang in there! I know it’s hard. It sounds like you’re in good hands, though.
I’m going to close with one of my favorite quotes. I often close my blog posts with it:
“Once you choose hope, anything is possible”.
~~ Christopher Reeve
Jeanne
P.S. I love that door picture too! I may be tempted to use that image myself someday. I see that you found it on Flickr. What a great image.
[...] from Novel Patient, describes her recent visit to a Sjogren’s specialist. Instead of getting the answers she was looking for, she is now on a quest for a new diagnosis, [...]
It sounds like you have Chronic Lyme Disease! There is hope…even though it is a big controversary in the medical world!
Check out http://www.underourskin.com/
My blog too talks about my Chronic Lyme Disease….
My website is in the process of being built. I am extremely slow at such things. On the other hand, I am a fast reader. Can I read your x draft of your novel?
http://www.thecodeoflife.info/pages/The%20Code%20…. I don't know yet if this has any merit. I haven't finished my research but I'm pretty sure I'm going to try it. At least some of the arguments carry alot of weight with me. I am more and more skeptical of our capitalistic society; being offered many different drugs to try, specialists to see, insurance so hard to get for most people. I'm ready to try something different. Your situation is significantly more advanced than mine and my prayers go out to you. Your positive attitude will be the best medicine you have along with a sense of humor. Best possible to you!
I'll check it out thanks! Hope all is well with you!