Lymphedema - It's Really Wierd

My "severe edema - lymphedema - severe edema - stasis dermatitis - lymphedema"  has been really weird for the last six months or so.  That's the only word I can think of.  I have always had trouble with edema during the summer but when fall comes around and the temps dropped, it pretty much goes away.  I actually have ankles through fall, winter, spring and even a little of summer.  This summer it came back with a vengeance.  I was back to only being able to wear my stretched out shoes and had a hard time walking. The hard time walking was a new problem from it for me.

An example of how severe swelling can be

For several years, my legs have "weeped" in the summer when they were so swollen.  They were so swollen that they could no longer hold the lymphatic fluid (did you know that we have lymph veins they carry lymph fluid down to your feet and back up again?) that collected in my legs and it was coming out through my skin.  It's just as gross as it sounds and it can range from a tiny drip to feeling like you've turned on a faucet.  Tiny drips feel weird but you get use to it and I keep a hankie close by to blot them.  The "faucet" weeping is scary.  I have one of those hard plastic things so you can roll your office chair on carpet under my sewing table.  Mother's Day this year I was sewing away when I moved my foot into what I thought was a puddle of water.  It wasn't water.  It was lymphatic fluid.  About a half cup full.  From my right leg.  I told you it was gross.

As the summer progressed, my shins became red and warm.  They were angry looking enough that  I  broke down   that Bill insisted that I make an appointment with my Nurse Practitioner to see what was wrong.  Not only did he insist on my going, he spent his day off at the doc's office with me so he got her diagnosis first hand.  The answer did not make either of us happy. 

Stasis Dermatitis Example

The red, warm and angry places on my shins was stasis dermatitis.  I had never heard of stasis dermatitis but when she started mentioning cellulitis she got my attention.  She even mentioned hospitalization and IV diuretics to get it under control.  We left the office with an antibiotic  prescription to hopefully fend off full blown cellulitis (it worked), a prescription for a strong diuretic and one for surgical compression hose.  I was also supposed to stay off my feet and keep them elevated as much as possible.

It was not a good time for staying off my feet.  This was in July and I was sorting, giving away, selling, throwing away and packing for us to be out of our house by August 31.  Out of our 3 bedroom house, with a big attic and a garage full of junk mixed in with the good stuff.  And we downsized too.  From a 1,500 square foot three bedroom house to a 1,094 square foot two bedroom condo.  I had to sort through and get rid of lots of stuff.  And she wanted me to stay off my feet. And keep them propped up.  It made life interesting.  

I hit Google looking for information on lymphedema and stasis dermatitis thinking that maybe I could show Bill that it really wasn't as bad my NP had made it sound.  What I read really made me get serious about staying off my feet as much as I could.

Livestrong.com has a good article on the 5 Things You Need to Know About Stasis Dermatitis.  Here's my summary of the 5 things:

1. Stasis dermatitis is a skin condition on your lower legs caused by excess fluid building up under the skin. It cause large sores, bacterial infections of the skin, difficult-to-heal leg ulcers or even bone infection below the ulcers. Like our fibromyalgia, this can be a chronic condition but it can be managed once you determine what is causing the edema.
2. Medical conditions that cause poor circulation cause stasis dermatitis when the excess fluid build up to severe edema.  When that happens the blood can't do it's job of taking care of the cells or eliminate waste products. This causes your skin to be malnourished and ulcers begin to form. Because the skin is malnourished, ulcers may open that are extremely difficult to heal due to lack of proper nourishment from the blood.
3. When your lower legs, especially your ankles start to swell, keep a careful watch for stasis dermatitis.  Some people (including me) have a deep ache in the legs. If you skin becomes thin and/or thick and dark it's time to have your doctor check it out. The skin will get really dry and itch like crazy!  DON'T SCRATCH!!!  At this point the skin is so thin that you can open your skin causing them to bleed.  Open skin invites infection.
4. To treat the stasis dermatitis, your doctor will look for the illness causing you to retain so much extra fluid and get that under control. How it is controlled depends on the cause. (In my case it's caused by venous insufficiency.)  It's very important to improve circulation to the legs to reduce swelling. Compression stockings help but trust me putting them on can be very painful.  One of my fibro symptoms is being tender to touch.  The swelling makes it worse so I was in tears when I put my hose on for several weeks. Prop your feet up anytime you can.  If you can prop them up about your heart, that's even better.  If you've developed skin ulcers your doctor may treat them by prescribing antibiotic ointments and medicated compresses.
5. Prevention is important. If you have a medical condition that restricts circulation to the legs, take precautions to prevent stasis dermatitis before it gets so bad that ulcers begin to form. If you sit or stand for long periods of time, try to take a break every hour or so to walk around and get your blood moving. I've find that my swelling gets really bad when I loose track of time sitting at the computer.
   
   
   I hope this helps take some of the mystery out of lymphedema.  You can find more information at the websites listed below.
   
   The National Lymphedema Network
   Lymphatic Research Foundation
   The National Library of Medicine
   The Mayo Clinic

The Countdown is On! A Change is Coming!

After being gone for so long from this blog, it looks like I'm coming back to it soon.  We've had a roller coaster ride over the last 9 months.  Some was fibro related, other things became fibro related because of the stress that threw me into a flare from dealing with it.  I've got a post started I'll share with you next week about the craziness around the Martin house.

When I started this blog, I was in constant pain that pretty much never got lower that a 7 and when it did, it didn't stay there long.  I found an awesome pain management specialist and have learned a lot about how to pace myself.  Because of this, I am managing my pain pretty well and keeping it in the 4, 5, and 6 levels most of the time.  I still have plenty of days that hit an 8, 9, or 10. I'm just blessed to have some good days in between them now.

I've had lots of time to think about what I wanted to do blog wise. I thought about just abandoning it - for a very short period of time.  I thought about how boring my pain is this days and figured if it was boring to me, it probably would be to you guys as well. I definitely feel that I'm to be an advocate for those of us who suffer with chronic pain. So I'm coming back.

I'm coming back with new ideas that I want to share.  In addition to hearing about how fibromyaliga rules my life, I want to share research information, articles on our illnesses and have some guest bloggers come in.  I've also thought about doing some giveaways.  :-)

I don't know about you but housework, grocery shopping, menu planning and cooking can really be HUGE problems for me when I pain is really bad.  I'll be sharing ways to get these things done with your pain and how to keep these things from increasing your pain.

We need to relax whenever we can but I have a hard time just sitting watching TV or playing on the computer.  I'll be sharing ideas for activities that will be both relaxing and fun.  Right now I'm thinking about book reviews, blog reviews, crafts and sewing/quilting.


Sundays will be a no writing day.  My plan is to share something with you that had an impact on my life that week through pictures and/or a Bible verse.


I'd love to hear what you think about these ideas.  Is this the kinds of things you'd like to see?  Should I stop writing all together? What do you want to see on the pages of My Life with Fibromyalgia pain? Please let me know through a comment.

My Social Security Disability Hearing and Why I Write this Blog

I'm really not sure what I was expecting when I went to my Social Security Disability hearing.  What ever I was expecting, it was totally different.  :-)  I had worried so much about parking and getting to the building.  About having to stand in front of the building and wait for Mr. Supportive to come back from parking the car.  That was a lot of wasted worrying.  The Memphis SSD office is in a one floor building with parking right by the door.  We arrived at the same time as my attorney and she secured a conference room for us to go over how the hearing would proceed. Rachel Cohen is a great attorney but more importantly, she's a wonderful human being who did her best to calm my fears.  

Instead of this

Unfortunately, Mr. Wonderful was not allowed in the hearing room. Him being there would have made it a lot easier.  Being a paralegal, my point of reference for a hearing room was a court room.  The idea of being "on display" in a big room had really bothered me.  I was glad to discover that a hearing room was nothing more than a small conference room with a table where the court reporter, my attorney and I sat.  The administrative law judge did have a semi- traditional "bench" at the end of the table and I think he was wearing judicial robes. 

It was more like this.

I was able to hold myself together for the first part of the questioning.  Things like my name and what positions I had held in my employment life.  Those questions have clear, factual answers.  It was when I was asked to describe how I became ill.  How it affected my ability to work.  How it affects my ability to function at home.  Those answers are also clear and factual.  At the same time, they are subjective, emotional and based on my inner experience as they happened.

As I told about going to school to be a paralegal and how that was a dream come true, I was calm.  The calmness began to go away when I started telling how my world had changed.  How I could not remember how to use the skills I had worked so hard to learn.  As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me.  As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall.  Several times, I had to stop and compose  myself.  It was probably the most emotionally painful time of my life.  The hardest question of the day was the last one.  Why did my illness keep me from working full time.

That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office.  How I had always been the one at work early and staying late.  How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well.  Then without warning, I started becoming a person that I didn't know.  A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building.  Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest.  I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away.  The pain grew to be so bad that I would throw up trying to get ready for work.  I became the most undependable and useless person I had ever seen.  I didn't understand it and I didn't want that to be my life.  By this point, I was pretty much inconsolable.  All I wanted was to get out of that room and into Mr. Supportive's arms.  


The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony.  Before we finished up, he asked me how long it took to write a post.  I told him it depended on the day.  On a good day, I could do it in a hour or so.  On a bad day, it could take several hours up to several days.  Then he asked me why.  Why did I write?  I don't think I really knew until he asked me that question. 

In the beginning, it had been to chronicle my pain so that he could read it when that day came.  It was at that moment that I realized that it was much more than that.  I realized that it was also for all of you who might read it.  That somehow it would help you not to feel alone.  It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head".  I'm here to tell you that it is real.  It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body.  It is a real illness that needs a real cure.  Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.  

I sometimes feel that the "world" is run by Google searches.  It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard!  Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can.  Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish.  Let the world know that we are legitimately ill and we deserve to be treated as such.

I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do.  I'm not sure how it's suppose to work because there are so many days when I can't function.  In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy,  Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.

Fibromyalgia, Lymphedema and Loneliness

My legs are swollen slightly larger than the one on the right.

 I think I've mentioned before that this summer's heat has been really hard on me. I was recently diagnosed with Lymphedema and it has been "introducing" itself to me. My legs and especially my ankles are so swollen that I can barely walk. I'm afraid that they are going to start weeping any time.  The first time they weeped it scared me but I've gotten use to it.  When they would swell so badly in the past, I would often think that it would make them feel so much better if I could just stick a pin in them and relieve the pressure.  I was right, it does take some of the pressure off but too much of a "good thing" can be scary.  Mother's Day I was sewing and felt wet floor under my feet.  It took me a minute to figure out what was going on.  In the mean time a puddle had formed under both feet on my chair mat.  Had a measuring cup been handy, I feel sure I could have captured enough to  measure. 

My doctor has not yet addressed the weeping but I am concerned because everything I've read warns against having any kind of opening in the skin. I looked up Lymphedema on the Mayo Clinic site and this is what it said:

 The reddened skin or rash on both legs (that's me) may signal a deeper, more serious infection of the inner layers of skin. Once below your skin, the bacteria can spread rapidly, entering your lymph nodes and your bloodstream and spreading throughout your body. Recurrent episodes of cellulitis may actually damage the lymphatic drainage system and cause chronic swelling of the affected extremity.  In rare cases, the infection can spread to the deep layer of tissue called the fascial lining. Flesh-eating strep, also called necrotizing fasciitis, is an example of a deep-layer infection. It represents an extreme emergency. 

Isn't that just lovely - NOT!!!! It's hard to rate the pain from the Lymphedema but if I had to assign it a level, I'd pick Level 2.  It doesn't hurt a lot but it is very uncomfortable. If you had asked me 5 years ago if there was a difference between being in pain and being uncomfortable, I'd say there wasn't one.  Where my ankles are so tight from the swelling, I feel like my skin is going to burst open in the creases when I stand up and walk.  My Fibromyalgia pain is a Level 5 right now.  I'm ok but I have to take my breakthrough pain meds.I hate it when I have to do that.

Fibromyalgia causes so much loneliness.  Merriam-Webster defines lonely as being without company (lone), cut off from others (solitary), not frequented by human beings (desolate), sad from being alone (lonesome) and producing a feeling of bleakness or desolation.  Fibromyalgia leaves you feeling all of those things.  Fibromyalgia produces all those feelings.


When you are unable to move around much on your own, you pretty much stay housebound.  It gets the point where you don't want to leave the safety of your home.  I'm home alone five days a week except for the occasional trip to the grocery or drug store.  It's just too hard to get out and go somewhere alone because the pain won't let you have a good time.  

I worry about getting out and becoming too weak due to the pain to make it back home on my own.  My fibro fog makes me be unsure of my ability to make it where I'm going and back home again because I've been out before and not remembered how I got where I was going or how I got back home.  I'm a homebody by nature but this is different.  I can choose to stay home and enjoy it.  I love the amount of sewing, reading and that type thing I get done with it's just me and my sewing machine or me and a book and I enjoy it.  Now, I'm not making that choice and it makes me incredibly lonely.  Its another thing that Fibromyalgia has changed about m y life.

There's another kind of loneliness that comes from your friends (most of whom you discover are more a casual acquaintance  rather than a particularly close friend).  These are the people who prior to your health and your ability to be out and about diminishing, you went to dinner with or "painted the town red".  At first, they still call and invite you like they always have.  As you have to decline their invitations more and more or have to cancel plans at the last minute, their calls become less and less frequent until they stop coming completely.  Your acquaintances don't realize that you do have good days and can get out and have fun.  We may not be able stay out as long as we once did but we would have been out with our friends.  For a short time, we would have been “normal” again. Your real friends, still keep calling, real friends come over and just sit and talk.  Real friends even come over to clean your house and fix dinner for you.

Some don’t understand what Fibromyalgia is and the limits it puts on our bodies. Others do not believe that how bad the pain and fatigue is and call us lazy.  No matter the reason, they don’t know what to say so they treat it like any other uncomfortable situation.  It’s easier for them to avoid the situation than to take the time to learn about our illness.  I prefer to think that most would feel bad if they knew how hurtful their actions were but it’s more likely that they wouldn’t.  This illness weeds out your true friends from acquaintances.

There’s one last group that causes loneliness, emotionally attacks us and treats us as if we are hypochondriacs, lying or are drug seekers.  This group is nothing like the others.  Friends and family can be in this group but most are members of the healthcare profession - the ones that took an oath to do no harm and to work to heal their patients. Often these so called professionals are the most hurtful of all the people we encounter.  There are no tests, scans or x-rays to verify a diagnosis of Fibromyalgia.  Too many healthcare professionals refuse to admit that a condition exists if they can’t find it using technology.  Most are unwilling to accept pressure point testing as verification. I don’t understand why. I believe that a good diagnostician would be able to tell if someone was “faking” it.   Real pain is hard to hide and hard to fake. Many times I’ve told friends and family that I’m fine only to have them tell me I didn’t look fine so tell the truth.  Real pain shows in your eyes and on your face.   Surely doctors are taught how to recognize signs of pain in their patients. 

It’s important to become your own best advocate when dealing with physicians. Not only will it benefit you, it will help other Fibromites (those who suffer from Fibromyalgia) that come after you.  Fibromyalgia is a real disease and the pain is real. Do not settle for a doctor who does not take you and your pain seriously. You deserve to have your pain properly treated.  There are doctors who will believe you so never stop looking until you find a doctor who will work with you and treat your illness correctly and aggressively.  I’ve learned that just because a doctor is a specialist in something that doesn’t seem to be related to Fibromyalgia, he/she can be excellent at managing your Fibromyalgia. My awesome pain management doctor is a psychiatrist who switched to pain management exclusively.  When I was referred to her, I was afraid it was my doctor’s way of telling me he thought I was nuts. The Tramadol he had prescribed was no longer managing my pain even taking double the maximum dosage.  I was so desperate for help with the pain that I went to see her.    If you are able, explore every referral you get.  I know from personal experience that insurance companies have some interesting ideas about how often we should go to the doctor, what tests the doctor should order and what medicines should be prescribed.  I am embarking on an effort to get my insurance to pay for my bandages to treat my Lymphedema.  They pay for the related doctor’s visits, medication and physical therapy.  It makes no sense to not pay for the bandages.  That will be another post soon.  I’ll admit that the odds of them approving the bandages are slim to none but if I don’t push the issue I’ll always wonder if they would have if I asked.

Fibromyaliga Effects Every Part of Our Lives - How it Effects My Church Attendance and Spirituality

The fibro has decided to let up a little bit!  I felt so blessed to wake up yesterday and my pain was down to a Level 4!   Not only was I able to go to church, I didn't have to leave the service  to go take breakthrough pain meds.  Often I have to get up and leave to walk around to ease the lower back pain and I didn't have to do that!


My church attendance and ability to take part in the services has drastically changed because of Fibromyalgia.  It's yet another example of how we have to reassess how to do things that before Fibromyalgia we did without thinking about it.  


Psalm 95:6 tells us to Come, let us bow down in worship, let us kneel before the Lord our Maker. Sunday, I was able to kneel at the altar for communion.  I was so happy.  My priest has told me for years that God doesn't care if I kneel or stand because God knows my heart.  While I know that to be true, it is important to me to kneel as a sign of reverence and to humble myself before God. 

St. Andrew's Episcopal Church, Collierville, TN

Our church was built in 1890 apparently without an altar rail. At some point a flimsy, low brass rail was installed. It was pretty low to the ground and hard to get up and down.  I learned when I had knee surgery several years ago that it was not sturdy enough to use as a way to help myself get up from the kneeling position.  Between my pain levels and Bill's work schedule, we were unable to attend services as much as I wanted to this winter/spring.  I was thrilled to walk in the door several months ago and see a beautiful wooden altar rail that matches the interior of the church.  When we went up for communion, I was pleased to find that not only was the kneeler higher than the old one, it was sturdy!  Now I don't worry about being able to get up without taking the rail with me.


While not being able to kneel has been emotionally difficult, it is nothing compared to the emotional roller coaster caused by the changes Fibro Fog has brought to my prayer life, Bible study and being able to serve as a Eucharistic Minister.

St. Andrew's Episcopal Church, Collierville, TN

As a Eucharistic Minister, I assisted the priest during the Eucharist by administering the wine.  I served for the last time in November 2010.  I had a dizzy spell and almost fell standing in front of the altar (and in front of about 100 people!) within seconds of stepping up to the altar.  A short time later, I forgot the words that I have literally said hundreds of times.  As you serve the wine, you say "the blood of Christ, cup of our Salvation."  Depending on how many people are in attendance, you repeat the line probably 50 times in a short window of time. That Sunday I had served 25 - 30 people and as I moved on to the next person, I forgot what I was supposed to say.  No matter how hard I thought, I couldn't remember it. My mind was totally blank. In reality, I'm sure I didn't stand there speechless for more than 20 - 30 seconds.  It seemed like hours.   I was fortunate that the person I was serving was a young child who didn't notice my mistake. The few minutes left in the service seemed to be 100 times longer than it actually was.  That day I lost any shred of confidence I had ever had in my ability to continue to serve as a Eucharistic Minister.  It was one more thing that Fibromyalgia and the accompanying Fibro Fog has stolen from me.

The Order of the Daughters of the King Cross

I am a member of a religious order, The Order of the Daughters of the King. The mission of our Order is the extension of Christ's Kingdom through prayer, service and evangelism. When I entered the order, I made a life-long vow to live by the Rule of the Order which requires a spiritual discipline of daily prayer, service and evangelism, dedicated to the spread of Christ's Kingdom and the strengthening of the spiritual life of my parish.   We wear our crosses at all times as a outward and visible sign we cannot live without Christ in our lives.  I no longer wear my cross when I'm at home because the weight of the cross and it's chain cause pain to my neck and shoulders.  That small pewter cross feels like it weighs 5 pounds when I have it on so I put it on immediately before leaving home and take it off as soon as I am back.

Fibro fog has changed my ability to pray as I once did. Many times I've realized that while praying my thoughts have wandered to thinking about doing laundry or cooking dinner.  Just as when I carry on a conversation, I will completely "blank out" on what i was saying.  In a conversation with people, they are able to prompt me so that sometimes I am able to complete the conversation.  When it happens during prayer, I try glancing at my prayer list.  Sometimes I see a word on the list that prompts me and I can begin again.  Other times I'm forced to ask God's forgiveness and go on from there.  My bedtime prayers are the worst because I'm pretty sure that I fall asleep in the middle of a sentence.  I am no longer able to do the intensive Bible studies that I once did.  It take numerous times of reading a verse to grasp the message in it.  This has progressively gotten worse because last year at this time I was writing devotionals dealing with pain.  Now it takes me forever to write anything that has any "meat" to it.  This blog entry is an example of that.  I started it yesterday morning and this is the third time I've written on it, trying for it to have substance.


Because it has gotten so lengthy, I'm going to close.  I hope I've given you an idea of how my mind works - or doesn't work - these days.  


PS:  I hope you enjoy the pictures and it makes this post a little easier to read.  I've read that pictures are good to keep the readers attention but I've been in too much pain to try gathering pictures related to the subject.  Since the pictures I used were already on my computer, It was much easier to do.  Hopefully, I'll be able to use pictures again.  Right now, it's time for my morning nap.

Fibromyalgia - She Rules My Life

Today was the best day I've had in awhile. The fatigue was still bad this morning and I went back to bed as soon as Bill left for work. When I woke up about 1:30 I felt much better. My pain was a Level 3 most of the day but as I've been more active it's coming up and it is quickly approaching a Level 4.

For my pain to be so low is not normal.  I wish that it was.  It would make my life and my family's life so much easier.  Sad isn't it?  I know Fibromyalgia all to well.  I know that she will not make my life easier.  Fibromyalgia will do everything she can to make my life difficult.  Fibromyalgia takes away the joy of a good day because you know the other shoe will fall. You know that the pain will return. You know that not only will it return but it could come back with a vengeance like it's never been before.

It rained today and brought the temperature down.  That was a welcome relief. Had the lights not gone out,  I would have gotten a good bit more done.  I did manage to pick up a lot of clutter that was laying around.  It made the house look better and in turn, I felt better.  Tomorrow I hope to get the house vacuumed and the laundry finished.

My sleep specialist called this morning with the results of my study.  My apnea has worsen slightly since I was first tested five years ago.  I've got to take my cpap in tomorrow and have the settings changed.  He is sending the results to my cardiologist so we have one more piece of the cardiac puzzle.  I wish I didn't have to wait until the end of next month for the MRA. I would really love to have all of this finished up. It's like a dark cloud following me around because it leaves a huge question unanswered.  Have I had mini strokes in the past? Is there really a possibility that I could have a stroke or a heart attack and with no warning die immediately?  Do I have multiple sclerosis?  Am I missing out on treatment time that could make a difference in my life in the future?

It's always irritated me that doctors don't seem to have the sense of urgency that we do.  We're told that our condition could be serious and that they need the test to determine exactly what is wrong and the treatment.  It's serious but we can wait a month or more to have the testing done?  I'm also having a hard time wrapping my brain around the fact that even though my cardiologist is requesting the test, I have to see the neurologist first?  It would seem to me that professional courtesy (and common sense) would be to schedule the test, review the results and share them with the requesting specialist.  If it's indeed a cardiology problem, I save the time and money of a neurology appointment and the neurologist has an open appointment for someone that really needs to see him.  If it ends up it's a neurology problem, then we've already got that information when I see the neurologist and treatment gets started sooner.  Makes complete sense to me.  What do you think?