Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering. - Paulo Coelho
I’m having a recurrent dream.
My Primary Care Physician calls me and says, “I have your results.” And I say, “There was nothing.” “Yep, nothing. Everything came back normal. I’m so sorry.”
And from there I ask what Neuro #4 suggests we do next. She says “it’s not neurological” and that I should see another specialist.
But what about the Neurological signs? The lack of position sense? Weakness? 
Atrophy? Positive Ankle Clonus? Sternocleidomastoid and trapezius spasm? Blurry vision? Unusually large pupils? The likely Sjogren’s?
If you’ve read much of this blog, you know this has been the theme for me for the past 1.5 years. It seems as though I might be getting closer to a diagnosis and treatment and then things change.
I hate my body.
I’m having trouble focusing on anything other than my desire for test results and answers. Sometimes I feel like I’m finally on the verge of cracking, emotionally. I get angry and feel like it’s not “fair” that I should be dealing with this. That I’ve had my fair share and I want my life back. I didn’t ask for this. No one understands. How have I been able to go through everything I have gone through and continue to work? Continue to hope for a better day? Continue to believe I will get answers?
Then I hate myself for thinking so adolescently. I should be more accepting. More grown up.
Thirteen of these collected for the tests below.
I look over my copy of the blood test codes and test names from my appointment with Neurologist #4. Several are the old standards: ANA (The one and only antibody I always test positive for but at different titers), Sed rate, CBCD blood panel, CRP, C3 complement, C4 complement, SSA, SSB, and Vitamin B12.
Then I look up the rest of the list and draw my own conclusions as to what Neuro #4 is thinking is wrong with me. I think he’s trying to rule out Lupus, Lymphoma, Multiple Sclerosis, and other possibilities.
Here’s a sampling of my blood tests links for more information when possible.
Coagulation Tests:
- Antithrombin III Antibody
- Lupus Anticoagulant
- Partial Thromboplastin time (also explained at the link for Lupus anticoagulant)
Metals
- Copper
- Zinc
Infections/Titer
- Rapid Plasma Reagin-SST
- C3D Immune Complexes
- C2 Complement (see C3D)
- Immune Complex C1Q-SST (See C3D)
- Cardiolipin Antibody
- DNA Double Stranded Antibody-SST
- Serum Immunoelectrophoresis
- Methylmalonic Acid-SST
And the big one – NMO-IgG – Sent out to Mayo Clinic. I can’t afford to go there but my blood can.
Why NMO-IgG is the Big One
NMO-IGg tests for neuromyelitis optica (NMO) also known as Devic’s syndrome/Disease. It’s a demyelinating disease similar to and often confused with MS.
From Devic’s and NMO Worldwide Support:
NMO affects only the optic nerves and spinal cord. MS can affect any part of the brain and spinal cord
- Relapsing Remitting MS (RRMS) tends to change to a gradually progressive stage but NMO generally doesn’t
- Attacks of NMO are usually more severe with lasting disability, while initial attacks of RRMS recover almost fully.
NMO can also cause blindness. When I talk about how I can deal with any illness, I neglect to 
mention that I can’t deal with being blind and deaf. It’s not that I can’t deal with it, it’s just my worst, saddest nightmare. I’ve been deaf for so long, it has a progressive cause and it’s been a challenge for so long. I just can’t imagine also losing my sight.
Waiting.
I’m wishing I asked the Neurologist what he meant when he said he “I don’t think we’ll see you again in this setting.” I didn’t ask because I didn’t realize at the time that the appointment was over.
I’m wishing for answers. Now! I’m hoping for treatment. I’m in need of hugs, love, and friendship. I want a good cry.
Do you ever feel like a ranting adolescent the way I have today?
Thank you for reading. I always love hearing from you.
Filed under: Uncategorized Tagged: | devic's disease, neurological, Sjogren's Syndrome, undiagnosed chronic illness
*hugs*
If it’s any consolation, I hear that ANAs typically fluctuate for everyone, even people with clear-cut lupus diagnoses, for instance.
I hear you on how hard it is to wait on the results, and how hard it is to have heard, so many times, that the test results were normal or inconclusive. It sucks, totally.
Sending you lots of e-hugs, love and friendship. Hoping as hard that you get a definite diagnosis (and treatment plan!!) as I hope for myself.
And because, even though I’m definitely female, I have that male fix-it syndrome, I have a suggestion too: Wait 10 days after the last scan, and call the neuro’s office. Call your PCP’s office too, to see if she has received the test results and/or neuro’s report yet. Ask for copies from both offices. (In my experience, I’m more successful receiving stuff like that from my internist than I am most of my specialists.) When you call the neuro’s office, ask for his assistant and tell him/her that you were overwhelmed during the visit and realized after you got home that you weren’t sure what he/they wanted you to do next. The assistant most likely won’t have an answer for you on the spot, and if they haven’t received the radiologist’s report yet, it might take a few days. But hopefully that will at least get you both the scan reports (and images!), and some directions.
Fwiw, when I have trouble getting a response from a specialist’s office, I have sometimes just gone ahead and made another appointment so I can get the 10 minutes (or however much) of face time to find out what the next step is.
*hughughug* Hang in there!
Aviva,
10 days!?!?! From the Gallium scan or 3T MRI? Hahaha I’m such an impatient patient these days. Great advice, Aviva. I don’t know if I mentioned that I did call my PCP and Neuro #4 already. I didn’t get called back by the Neuro’s office but my PCP called to tell me to hang in there and that they will contact me as soon as they receive anything. My 3T MRI is this Saturday and imagine that will delay a report even further. I will definitely call to find out what the next steps are also. Thanks for caring and all of the support!! **hugs**
Hey Q!
Sorry about the 10 days! I’d forgotten you had an MRI coming up too that was separate from the Gallium scan.Unfortunately, the neuro mgiht want to wait until getting the MRI report before letting you know any results. But I bet your internist (like mine) will call you when she sees the Gallium scan report come past her desk. I do try to give my docs a week before I start agitating for a copy of things, but you’re understandably worried and desperate for answers, so I’m sure Dr. PCP will undrstand if you call her periodically.
And I totally agree with Laura that it’s not at all adolescent to feel angry, depressed, sad, or whatever combination you get! You wouldn’t be human if you didn’t have those kinds of reactions. I’m blessed with a husband who will let me cry on his shoulder, literally, when I need to. And it’s often right after getting scary new symptoms or unhelpful test results that I do my most crying and whining about it.
Hang in there, and good luck with the MRI on Saturday.
Aviva’s got some great advice.
I’ve been on the results roller coaster. I’m in hiatus right now. Hoping for no new symptoms (knocking on wood as I type that even) and biding my time managing the ones I have. Like you, the only “positive” result was the ANA – I get it along with the lecture on 5% of the healthy population has an elevated ANA…etc. Seeing as I taught stats and experimental methods, I have a *very* hard time not launching into my own lecture in return, about how I’m clearly not in the healthy population, etc. See, I do *try* to be a good patient.
I have no good advice for how to deal with the plummeting feeling of another “hey you’re healthy!” result. I make jokes. Lots of ‘em. And I employ bitter sarcasm. At home, I cry. Hell, at work I cry too but I try to do it where people won’t see me. I think Aviva’s got some great tips on what to do…as for how to feel, well I don’t think it’s adolescent to feel angry, down, or at your breaking point here. I do. I just started therapy again actually to try to deal with it.
I wish you a better day.
Laura,
I admire you for keeping your lecture at bay. I know how hard that can be for people in your field (I’m in a similar one!) That part is often tough for me! I’ve been so shook up about the possibility of lack of info/”Yay you’re healthy” that I’ve been talking and yelling in my sleep. It is something I do occasionally but especially when my mind is overcrowded. I need to find a time when no one is around to get the good cry out. I appreciate your sarcasm and jokes and hope you can forgive me for lacking anything but fear and sadness right now.
I hope your hiatus lasts. I felt like I was there until the pesky neck and arm symptoms came in to play. I wish you warmth and plenty of private times to cry. Along with many, many better days.
Oh, and I bet I know why the neuro said he probably wouldn’t see you in the office setting next time — the Gallium scan was to look for places most affected by the Sjogren’s, right?
I bet he’s assuming that when he gets the results, he’ll schedule you for a biopsy, which might not be done in-office.
Anyway, that’s my theory. Does it sound plausible to you?
It does sound plausible… he mentioned that once they define the “hot spots” from the Gallium Scan, one of “their” (The Medical facility’s) ENT’s will do the biopsy based on where most of the inflammation is shown. I just keep going through my mind as to whether I will have another Neuro appointment at all – that I’ll be transferred to Rheumatology or managed by my PCP, or transferred to a different Neuro (He was very diagnostician-like) or transferred to neuro ophthalmology, or oncology – who knows!? I just want clarity and answers.
Thank you for reminding me of my permission to be sad and angry, etc.!
PS – Just an FYI – I had to wait for the MRI until more of the Gallium is out of my system.
Q-You have every right to be an “impatient” patient.I get easily irritated about things like that too.I dont think drs/nurses realize how much of an emotional roller coaster/anxiety ride that most medical stuff is for the patient.I realize they *have* to become a little jaded(at least I would because I couldnt handle the emotions that I know I would pick up from people waiting)
It feels like they think we *want* to be sick..they dont understand that the happy dance you want to do when you finally get a diagnosis and treatment plan isnt because we feel validated and hahaha we are sick!Its because finally we know what we are dealing with and can begin looking at different treatments and give firm answers to people in our lives who have been riding the sick train with us.
The ANA test can change titers and it can also change patterns.I personally have been speckled and homogenous.My anti ds-dna has also fluctuated.I havent had either done in almost 2 years..my rheumy says he got the answers he needed from those two and the one my GP ran.
I personally feel like what the neuro meant was this (and maybe I am way off base)but he feels like it is SJS and if so he will refer you back to rheumy care for treatment evaluation and options.That wont be his deal.He would see you if you were under treatment and still progressively got worse with neuro symptoms.
If the SSA/SSB come back pos and the gallium scan I doubt highly that your dr will require a lip biopsy.Those are usually done when all labs are “normal”(I hate that word in this setting)but the patient continues to show signs and manifestations of SJS that would require more than symptom treatment(more like an MTX or Cellcept or even IvIG treatments to rein the illness in)they do the lip biopsy then to see if SJS shows so they know they arent totally off base treating with meds that could make things worse because they arent even recommended for the illness you might be facing.
You have every right to be frustrated,angry,irritable and pissed off quite frankly.You have had to keep on keeping on in spite of being terribly ill with an illness that has progressively gotten worse and received no answers to questions that shouldnt even be on the board anymore.You have had to fight for care,testing,and push drs to push forward.
But you have done a wonderful job.You advocated so well for yourself and left this wonderful trail of your trials,triumphs and even the failures so that others can hopefully learn to do these things or perhaps even find answers in your posts.An AMAZING job.You should be so proud of yourself for that….it will help others.
I know you feel like you are playing the hurry up and wait game..its never any fun..no one else wants to play.I would give you a nice squishy hug that made you squeak from air loss if I could but I cant so please accept this one (((HUGS))).
Good luck on the MRI and this will be over soon.
Kimberly,
Such a sweet, warm, and thoughtful reply. I definitely feel the hugs and goose bumps from all of the kind words. I’m a bit speechless so I will say thank you. Thank you so much for thinking so highly of me (blushing) and for taking the time to show your caring. It means more than you could know.
Best always,
-Q