Professional Patient

Testing for Peripheral Neuropathy

I may have developed peripheral neuropathy, a nerve problem that can occur in chronic illnesses such as Sjogren's Syndrome. Peripheral neuropathy is most often described as causing numbness and tingling sensations in one or both hands and/or one or both feet. For me, it feels a lot scarier than that - burning sensations in my arms, legs, and sometimes my torso and chest. Itching/prickling sensations. Numbness. Occasional stabbing pain. Cramping in my toes and forearms. Cramping in my thighs and calves. Muscle twitching. Poor fine motor skills - fingers that won't do what I want them to. Feeling like I am vibrating or shaking all over... even though I am not. Feeling like my legs won't hold me up, or like I can't move an arm or a knee. Rapid muscle fatigue and pain with exercise. And extreme, life-flattening exhaustion. 

Neuropathy occurs when something injures the nerves and causes them to lose function and/or send false messages to your brain. In autoimmune disease, this phenomenon is related to the immune overactivity that is damaging other parts of your body as well. Sjogren's World has a nice page that reprints a lecture/article by Elaine Alexander on Peripheral Neuropathy and Sjogren's. It explains the various flavors of neuropathy and gives some (slightly outdated) information about treatments. MayoClinic.com has a more updated set of information about peripheral neuropathy treatments and drugs. 

If you think you might have neuropathy, you need to go to a neurologist for a thorough exam. When I saw my neurologist, he did things like test my strength in arms, leg, shoulders, hips; check my deep tendon reflexes in arms, legs; and use a safety pin tip to test where my skin registered sharp sensations. Then he recommended a slew of tests to check the function of my nerves.

Testing for neuropathy is not a fun experience. I had it done once before, and all of my results came back negative. This was in early 2008. Now that my symptoms have really ramped up and are a daily problem, they want to put me through all of the tests again. 

Step 1 is a nerve conduction study and electromyelogram (EMG). WebMD's Electromyelogram and Nerve Conduction Studies web page explains that an EMG tests for neuromuscular issues (damage to muscles, nerves, and junctions between them), while a nerve conduction study focuses specifically on how signals move through the entire chain of nerves in your body. Both involve getting little zaps of electricity sent through your affected area (they will probably test a leg and/or arm for me). It doesn't hurt, but it's not pleasant, either. 

Step 2 is a skin punch biopsy. True peripheral neuropathy is sometimes caused by damage to the small-fiber nerve cells, which are grouped farthest away from the spinal cord, near the surface of your skin. EMG and nerve conduction testing can't detect this kind of neuropathy - your test results will be normal. To check for small-fiber neuropathy, a technician will take a small section of skin from an affected part of your body. They use a small-diameter circular "punch" tool (a tiny open-ended cylinder) to remove the skin. For me, they plan to take one "punch" of skin from my upper thigh, lower thigh/upper knee, and ankle on each leg - for a total of six segments. This skin is then prepped into slides and reviewed by a pathologist. The pathologist is trained to identify damage, swelling, and abnormal nerve cells that may be visible on the slides. Johns Hopkins University's web site includes a detailed explanation of the skin punch biopsy procedure, with pictures. 

I found my first skin punch biopsy to be unpleasant at best. I had a hard time lying still long enough for the skin samples to be removed. And then, a few hours later, the biopsy sites really started to hurt. And kept hurting for at least 36 hours. Also, my sites didn't heal up as quickly or prettily as the take-home instructions said they would. So plan to have advil handy and be careful about washing and drying your biopsy sites until they are fully healed! Also, if you take blood thinning medications, be sure to stop taking them two weeks before the procedure, so you don't bleed excessively. 

More Helpful Tips on Coping with a Cervical (Neck) Collar

George Flanagin's ACDF portal has excellent tricks and techniques for coping with life in a neck collar. I especially can relate to his explanation that once your collar is on, your vision shrinks to what is directly ahead of you. It IS a little nauseating. I used to get seasick trying to shop at the grocery store or somewhere like Target. I tried walking down the center of a row and looking side to side... a recipe for dizziness and sour stomach. I finally learned to stand against one side of an aisle, with my back to the shelves, and look across at the items on the other side of the aisle. I would side-step my way down the row, then switch so my back was against the shelves on the other side of the aisle, rinse, and repeat. I'm getting tired just thinking about it now!

New, Dedicated Sjogren's Syndrome Treatment Clinic at Johns Hopkins-Bayview

JHU has established a new Sjogren's center at their Bayview Hospital in East Baltimore, MD. It's a brand new clinic designed to provide one-stop care (dental, ENT, OB, ophthalmology, neurology, and rheumatology) in a single office. It has a primary research aim of better defining Sjogren's (I think with the goal of making it a disease rather than a "syndrome") and exploring issues like the weird neurological changes and pain issues that can happen in Sjogren's patients.

I visited yesterday and met with the neurologist on staff, Dr. Julius Birnbaum. He is excellent. He spoke recently at one of the recent Sjogren's Syndrome Foundation patient conferences - his talk covered neurological complications of Sjogren's. Among other things, his research team has identified some component in blood (a gene? a protein? an antibody? I'm not sure) that is high in Sjogren's patients with peripheral neuropathy.

I have also been treated by the director, Dr. Alan Baer, at other Hopkins facilities in the past. He is excellent also - he's the lead rheumatologist for the new clinic.

They are accepting new patients (local or out-of-town), although I expect them to get overloaded pretty quickly with people like us! If you are interested in making an appointment, full instructions are at this URL:

http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html

Preparing for Surgery: Post-Op Must Haves

This is a wonderful discussion of things you may want to have handy after a major surgery (this list is tailored to mid/lower back surgery, but applicable to many other situations). Also tips for what to bring to the hospital, and some tips for pre-op tasks. 

Tired... so Tired

Ever since I went to the ER on Sept. 22 with low blood sodium, this has been me.... going,... going,... gone. So tired! Muscle cramps, feeling shaky and wobbly, poor fine motor control (I've dropped so many, many things), muscle pain and fatigue, and burning/tingling sensations in my hands, feet, legs, and arms. But overwhelmingly, it's the fatigue that's getting me. I'll be back, I promise... maybe after a little nap.

see more Lolcats and funny pictures

Best Hobbies for Time Spent "Resting Up"?

I am getting sick with a cold, and I've recently had a higher than usual level of exhaustion, muscle aches, brain fog, and new neuropathies. So I know I need to rest - tonight is not the night to go shopping, vacuum the house, do my homework, or tackle the 4 loads of laundry that are waiting for me. 

I've been in this "resting up," "trying not to get over-tired" mode for a few weeks now. And I'm sick of it! Bored silly. And endlessly frustrated at all of the things I've had to ignore while I try and get my energy back. 

How do you like to spend time when you are too mentally and physically tired to do anything but take it easy for a while? (But not so tired that you are sleeping all the time?) TV gets to be too much. Reading actually can be too physically demanding for me sometimes - the effort of holding the book and turning the pages can be intense if my neuropathy is acting up. And my balance is a little wobbly, so I'm not doing much tai chi at the moment. 

What's a peaceful, happy, and engaging way to while away hours while you are resting? Knitting? Scrapbooking? Writing letters or emails? What works for you? I need ideas!

Tips for Surgery and Recovery - Before the Surgery

A colleague will be having hip replacement surgery in late October. In speaking with her briefly about her preparation, I realized she's doing lots of things right. But she was unaware of many other tips (from myself and other spine and heart surgery survivors) that can ease her through the process. 

So here is the first of several posts outlining top tips for getting to and through surgery.

Before the Surgery:

Get in touch with your motivation for having the surgery and going through the recovery process. Talk to someone, meditate, pray, journal, or do whatever until you find a positive mental space. I made a vision board. A few weeks before surgery, when I was terrified, I asked myself “Why am I having surgery?” “What will it bring to my life?” “How will it make my life better?” And I clipped out words, phrases, photos, etc. that helped answer those questions, and taped them all to a piece of posterboard. My board included a photo of a romantic dinner, an airplane, viewing autumn leaves in New England, a beach vacation, dancing shoes, etc. Plus some of my favorite inspirational quotes, pics of friends and family, and photos of things that just make me happy. Doing this exercise got me focused on the good and helped me dig down for positive motivation – which helped me get through the fear and the pain!

Ask your doctor if you can have your pain med prescription written/filled ahead of time to have ready for your return home. That way you aren’t running to the pharmacy on the same day you drive home. That also gives you time in case the pharmacy has to special-order your medication, you have to get insurance preapproval, or anything unexpected like that.

Write an advanced directive and give it to the hospital during your preadmission visit. At the very least, fill out the part of the form that allows you to designate someone to receive updates on your condition, hear your test results, etc. Hospitals should do this anyway – just allow one family member to hear your protected medical information. But putting it in writing eliminates all confusion. View ADVANCE DIRECTIVE: Guide to Maryland Law on Health Care Decisions (Forms Included).

Get help from your health insurance company. Some health insurances offer case manager services. This is someone who can expedite all the paperwork that goes with major surgery, coordinating home care and prescription med approvals, etc. If that sort of thing overwhelms you, you might want to try seeking out some case manager support. 

Arkansas Blue Cross Blue Shield makes it incredibly easy to find a case manager - visit their Case Management web page and type in your zip code. In other states and other insurance plans, you may have to work harder to find a case manager - call your customer service rep and see if they can direct you to a case manager.

Tips for Surviving the ER

Last Tuesday, I went to the ER with numb/tingling arms, legs, wooziness, headache, and rapid waves of prickly nausea. After checking in around 2:30 pm and having basic bloodwork drawn at 3-something, I finally saw a doctor around 8 pm. They told me I had hyponatremia (low blood sodium level)... very dangerous. It can happen when you drink too much water too quickly, or when you get dehydrated. They gave me IV fluids and kept me overnight, then sent me home with instructions to limit fluid intake and follow up with my primary care doctor.

This little ER visit reminded me of useful tips anyone should keep in mind when visiting the ER:

1. Expect to wait. Most people are not seen right away. That's so people who deserve immediate attention (car accidents, gunshots, heart attacks, strokes, burns) can get the help they need. Don't take it personally. And don't take your impatience out on the nurse or clerk trying to help you.

2. Be clear about your symptoms. Now is not the time to underplay your symptoms out of some sense of macho bravado. Be honest. That will help them decide how urgent your problem really is.

3. Take food and drink. If you are only sick (i.e., don't expect to need emergency surgery), take gatorade and some kind of small snack. Anyone who is already sick will only get sicker if they try and tough it out for 6 hours in a waiting room without food or fluids.

4. Take your insurance card. This is a duh! Even if you run out of the house in your PJs, make sure you or the family member coming with you has your insurance card.

5. Notify your primary care doctor before going. I called my primary doc to ask if she thought I should go to the ER, and when she said yes, she also called ahead to the hospital to notify them of my situation. It didn't help me get treated faster, but they at least knew my name when I checked in.

6. Take a list of medications and past medical problems (major illnesses, surgeries) with you. I have one that I typed on a piece of paper and folded down to fit in my wallet. Every nurse and doctor I handed it to (and there were many) said "I love when patients have this information ready for us."

7. Jot down the progression of your symptoms - the ones that led you to go to the ER. This is something you can do while you wait, or before you get in the car and drive to the ER. Sometimes symptoms start small and get big, or start in one part of your body and move to another. This kind of information can help doctors know what your problem is. Bring your notes to the ER with you and read them to every doctor or nurse who asks why you're there. That way you don't forget anything, and everyone you speak with gets the same information. And if you're too tired to talk, you can hand your notes to the doctor. 

8. Ask people to clean their hands. Everywhere I went, there were signs reminding staff and visitors to clean their hands before touching or being close to patients. You don't want to pick up MRSA or the flu while you're in the ER. It's OK to ask people if they have cleaned their hands, and to make them do so if they have not. 

Let’s Talk About Brain Fog

I have a very embarrassing problem – brain fog. It’s scary, too. So scary that I don’t talk about it with anyone in my real life (my rheumy hears all about it, but she’s the only one). 

I suspect I’m not the only shy person dealing with brain fog, alone. Brain fog makes it really hard for me to concentrate and do basic tasks, like write an email at work. It makes it very hard for me to find words when speaking… finishing a sentence can be a real challenge. It makes it easy for me to lose my train of thought… in the brief time it takes me to walk into another room in my house, I can forget why I wanted to come to the room in the first place. It makes hard for me to stick at a task for a long period of time… I need many more breaks when reading, for example. And it makes me feel so very, very tired. I never have brain fog and yet feel peppy and awake… I always feel so tired that I could lie down and call it a day at 10 in the morning. 

This is tremendously scary to me…. I have always been little miss perfect, especially back in my school days. I had the determination and drive to be good at everything academically. In my work life, I have relied on my ability to concentrate deeply and for long periods of time to get ahead. I have also been the lady with the silver tongue most of my life… always quick with an SAT-level vocabulary word. So much so that I work as a technical/science writer… I write and edit all day long, documents full of specialized technical words. I have to be sharp. And my vocab/writing engine has to be at full rev. 

But brain fog turns my mind against me. Is my mind going to work today, I wonder? Will it drop away from me suddenly, perhaps in the middle of a key project? Or will it never show up in the first place? Some days, I’m pretty good. Some days I’m completely not. It’s like my brain is wrapped in cotton and my thoughts just can’t get through. I never know what to expect. 

Brain fog was an insidious invader that crept up on me very, very slowly… so much that I didn’t really notice it had arrived. I just knew I felt awful all the time. When I started on prednisone last fall, my brain fog improved a lot. My mind started working better and more reliably. That’s what made me realize I had brain fog in the first place. If I hadn’t started on prednisone, I would never have realized how much brain fog had affected me. 

My brain fog is probably associated with my Sjogren’s syndrome. People with autoimmune conditions like lupus and rheumatoid arthritis, and other chronic conditions like fibromyalgia, report brain fog at higher rates than healthy people do. Theories abound – many brain fog sufferers also experience chronic pain, which lowers the quality of their sleep, which may impair brain function. A recent MRI of my brain also showed mild “periatrial flare”, which is not unusual in autoimmune patients. Whatever causes periatrial flare may be making my brain slow down. Stress can aggravate brain fog, certainly. And certain neurological medications (like Lyrica) can also produce or worsen brain fog. 

If you have brain fog, are you as embarrassed and secretive about it as I am? It peeves me to no end that I can no longer count on my mind 100% of the time. I live in fear that someone at work is going to tell me that the quality of my work has slipped and they have to end my employment. The stuff of nightmares! 

I try to cope with my brain fog by keeping lists and calendars, using my email and scheduling program’s flags/reminders, keeping a steady sleep routine (no sleeping in excessively late on weekends), avoiding excess caffeine and sugar (both of which can cause energy slumps), and using whatever immunosuppressant drugs my doctor will prescribe for me. What do you do? 

Learn more: 

Chemotherapy was one of the first recognized causes of brain fog. See New York Times, “The Fog That Follows Chemotherapy”. 

“Brain Fog, Is it Sjogren's Syndrome?” This article was taken from a talk titled “Brain Fog and Other Central Nervous System Symptoms: Is it Sjögren’s?” by Susan McDermott, M.D., at the SSF National Meeting in April 2003. 

Fine Needle Aspiration, Take Two

My doctor unnecessarily scared me to death over my fine-needle aspiration (FNA) results. I fully expected to hear something like "it may be cancer," "it is cancer," "we need more tests because it seems to be cancer," etc. And instead? He says that they didn't get enough material during the previous FNA to run flow cytometry. So we need to do the test again.

So I was terrified over nothing! Nothing! And why the heck did I have to go in to see the doctor for something like that - couldn't he have called me instead? Growl.

My repeat FNA will not be at the doctor's office. Apparently the quick and easy route didn't work - they are sending me down the road to the big university hospital (Johns Hopkins) to have this one done. Moral of the story? Go to the big hospital the first time. Yes, it's inconvenient. Yes, it takes forever. But they should be able to do it right the first time.