I was hoping to never see another Neurologist ever again. That was before I met Dr. B and Dr. L.
I was taken completely seriously.
In fact, when I mentioned to a room full of medical professionals including Dr. B. about what University Neuro doc said to me , they all expressed shock, disapproval, and disbelief. I am validated.
Dr. B. was both kind and attentive. Before I started blabbing about this symptom and that, I asked him, where would you like me to start?
It began where this blog begins, my leg symptoms and how they have fluctuated between mild and severe for the past year but they never go away. How my SCM and trapezius muscles began to spasm about a month ago followed by a recent rapid onset of right arm pain and weakness.
Dr. B. asked great questions. Questions that I could think about and answer. My calendar of symptoms I have been keeping since July, definitely helped. He was open to my questions for clarification. Can you explain what numbness is like? I’m not sure if I have it or not. In the end, I do have numbness. My description of my numbness is a feeling like my limb is “dead” or like a rag doll. I also realized my vision is more blurry than I thought, thanks to his careful exam. I also have enlarged pupils.
NOT me. My legs are not manly or hairy (at the moment).
I learned that a lot of the pain I feel is joint pain. I didn’t really realize this. As I told Dr. B., I adapt, just as all people do. I make accommodations without even realizing it. If I’m having a rough leg day, I don’t wear jeans. Jeans are heavier for me to lift. I own lightweight shoes. I know I have problems but can’t always articulate them because they are my new normal. I move on. I plan my weekends to the point that if I know I will be doing a lot of walking or standing, I counter that with rest time. This difficulty keeping up concerns me.
Turns out I have reduced sensory responses. I have positive clonus – 3 beats in my left ankle. Brisk reflexes. Differences in my right and left arms in terms of strengths and reflexes. And a whole host of other neurological symptoms. Overall, this was the first very thorough neurological exam I received.
It is suspected that I have Sjögren’s with a strong neurological component. Not a typical presentation and mine is rather rare in its presentation. It may be that I do not have enough cerebral spinal fluid for my brain and cervical spine to function properly. This is different in scope from the Sjögren’s syndrome your Aunt Helen or Grandma may develop as they
age and present with mostly dry eyes and dry mouth symptoms along with aches and pains.
I definitely have neuro signs but there are no lesions shown on my 2009 MRI which is good. However, we must rule out other neurological diseases so I will be a super high tech 3T MRI. I was told I for sure do not have Arnold Chiari syndrome but nothing else was really ruled out as I show signs of both upper motor neuron problems and lower motor neuron lesions. I got 13 vials of blood taken for more sophisticated tests than I knew were possible.
I will also get a gallium scan to locate what areas of my body are inflamed and what area is best to biopsy for Sjogren’s. The lip, where my ENT was going to go, is not always where you can get a positive/accurate result.
I am so touched by Dr. B.’s treatment of me. He was so kind. He did for me what no other Neurologist did. He listened. He did a thorough exam. He saw me, as me. He even smiled when I expressed myself – the “real” queen. And, it’s leading me somewhere. I must be sure to thank him in a way that fully expresses my appreciation. I did already hug him. I’m a hugger.
My gallium scan is Monday. It is a 3 day test. More about that next time.
As always, thanks for reading and commenting. I owe WordPress a big thank you as well. This blog has been such a great tool for me. Without it, I don’t know that I’d have as many pieces of the medical puzzle coming together right now.
Filed under: Uncategorized Tagged: | 3T MRI, brisk reflexes, doctor patient relationship, gallium scan, joint pain, neurological exam, neurologist, positive ankle clonus, Sjögren's
Wow!! And Wow!!! Keep us posted on progress, but I am so glad that you had such an excellent appointment.
Thanks so much!! I appreciate your support and will definitely keep everyone posted as I enter this new phase.
I don’t know whether to say, “Hooray! Someone listened,” or “That really sucks that he found more problems.” It’s so good to hear that you were taken seriously and that answers might be on the way. ((hugs))
Thanks for the hugs WarmSocks. I’m feeling them. I’m all about the Hooray part of this, though I do got the the “why me?” stage some times. I just am mostly in awe that beginning 13 months ago, most doctors I saw thought my problems were psychiatric/fake in nature and finally, I no longer need to second guess myself. Hugs right back to you!
Oh, speaking of MRI’s, check out this song by Charlotte Gainsbourg using sounds from an MRI.
I know it’s good news & not good news. But I am happy for you! I have some neurological components to my Lupus & also have sjorgrens as a secondary condition. sjorgren’s is an autoimmune disease and can vary in scope & seriousness. I hope this is the answer for you & a definitive dx comes soon. And then a a treatment plan that will get you feeling better!
Sharon
Thanks, Sharon. I’m happy, too. After everything I’ve gone through, I’m no longer scared of any dx, prognosis, etc. I can deal with whatever comes my way, as long as someone is following my case with treatment as the goal. Thanks again!
Here is a great site that explains Sjogrens Syndrome in depth. http://www.sjogrens.org/home/about-sjogrens-syndrome . It is a very misunderstood illness that unfortunately alot of people (including Drs.) think mainly revolve around dry eyes/mouth.Its not.I carry the diagnosis as secondary to SLE.SJSWORLD is a web forum for individuals who have it and the variety of symptoms and struggle to receive validation or a formal diagnosis is amazing.It takes 6 yrs on average for a diagnosis and most drs act like it never goes any farther than eye/mouth.There is a lady on there awaiting a heart transplant because like SLE and RA it can affect your organs and a large volume of other body systems.I am glad someone is listening to you finally.I hope this is the right path.
Hi Kimberly, thanks for the resources. I look forward to checking them out. It sure does seem like a very misunderstood disease. Thankfully, my new doctors seem to have a high level of understanding in their area of neuroimmunlogy. But the few peopple in my life I have told about the SS, all know someone who has it and “it’s not a big deal”. Clearly, not always the case. As a person who has been mostly undiagnosed, it’s empowering to know I can connect with groups of people who have similar problems instead of feeling isolated as I have previously.
Thanks again and best wishes to you.
My eyes are the worst for me(I dont include joint issues,pain or neuropathy as there is no way to tell if it is the SLE or Sjogrens.Print info from the SJS site and it will help people understand the ramifications that can accompany this illness.I had my tear ducts plugged with punctal plugs to retain tears as my production is almost non-existant.I read all of your blog last week when I stumbled on here by accident.Some made me smile,some made me cry for you so I have been checking back to see when you updated.Thank you for having the courage to share your story..many dont realize how hard it can be to be dismissed.Does a diagnosis make a difference to your dr who treats your symptoms or your ins co?No..but to us, the people who wake up everyday and wonder “what will today bring” *sigh* at least you have a name to call your enemy by.I was diagnosed very quickly in rheumatological time(I was anti ds-dna pos so there was little doubt what the monkey on my back was named)but you are giving hope and encouragement to many people who lose faith in themselves because the doctors just dont listen sometimes.I have often said I was glad when I found out it was SLE..I am alive today and I can fight this.There may be good and bad days but thats not an illness thats just life
.IMy life could always be worse..I have a great dr team,supportive hubby and kids and family..so I am very,very blessed.I wish that for you.Its hard to fight an enemy you have no name for and cant find out what it can do and arm yourself with the latest info and surround yourself with caring drs and great friends.I am glad that you finally got a name..now you know how to address it when you are kicking its butt 
.Much luck to you and I will continue to read and cheer for you.Blessed be.
Oh Kimberly, thank you so very much. I feel the warmth of your caring and cheers and they mean so very much. I can imagine your SjS and SLE symptoms are very challenging to distinguish. I’m glad to know you are kicking butt and have a supportive army behind you.
When I started this blog, I felt mostly silly about it. I could have never imagined the positive impact it has on my care (by being a therapeutic release and a reminder of my experiences) nor the attention it has gotten from caring people like yourself. I feel so honored that you have taken the time to read my story and are here to cheer me on. It means more than you know…
I’m going to keep my fingers crossed for you that this guy’s the ticket in the long run – for right now, I am so happy that you were listened to and taken seriously. I want to make you an award or something, you should get a medal for bravery under fire for pushing on.
Good luck with the gallium scan.
Q,
I’m so happy for you that neuro #4 is so supportive and really listened to you! The next steps sound kind of scary, and yet, what a blessing it will be to find out the name of your mystery illness(es)!!
I hope you get answers through the next round of tests you’ll be undergoing!! Keep us updated!!
*hughughug*
I wish you all the good luck you can have!