Dr.'s appointment

So I went to the doctor today even though I was so tempted to cancel.  Dr. Stephenson was very kind and I really liked her.  We went through all my history and when she asked about any other problems, I told her I really didn't want to talk about anything else until I actually know what I have.  She explained that if I don't talk about whatever is going on, she won't be able to make a full assessment.  I tried to explain to her that I'm questioning my sanity and just need to know a diagnosis without anyone thinking I'm nutty.  I told her about my constant fatigue and memory problems.  Dr, Stephenson told me that a common complaint with MS is fatigue and cognitive impairment and that I shouldn't be concerned about what others think.  I then told her about how I can be thinking one thing but something else comes out of my mouth and how sometimes I have to search the recesses of my brain for the right word for something when it is something very simple.  She was very sympathetic and said that if I am found to have MS, she would like to refer me to Dr. Samuel Brinkman who specializes in neurological psychiatry.  Dr. Stephenson asked about my family history with autoimmune illnesses and low thyroid disease.  We then went on and she performed some neurological tests.  She had me do a heel-toe walk test (which I bombed), stand with my feet together and eyes closed (which I swayed), finger from nose to her finger and back, walking, reflex tests including the Babinski reflex (which the toes on my left foot moved dramatically and the toes on my right foot had slight movement when she ran the pen across the bottom of my feet), and numerous memory tests (I couldn't remember the 3 items she said to me 5 minutes earlier).  Dr. Stephenson also checked my eyes and sensitivity to touch.  She said that my left optic nerve looked fine, but my right optic nerve is inflamed and was off colored, but not pale.  I asked her if that was because my last episode was in my right eye and it just hasn't healed completely.  She advised that no, the damage was permanent.  Dr. Stephenson said that based on my previous documented episodes and our conversation, she felt it was safe to say that I clinically have MS, but that she wants me to have a MRI and lumbar puncture before she makes a definite diagnosis.  Dr. Stephenson did say that there were other things that could cause my neurological problems.  For now, she has diagnosed me as having demyelinating disease of the central nervous system.  My MRI is scheduled for 8:30 a.m. and the lumbar puncture,  which will be done by Dr. Stephenson in her office, is at 2:00 p.m. on January 5, 2011.   Dr. Stephenson also ordered 17 blood tests, which I had done today (8 vials of blood).

Now that I've done this, I really feel no different about all this than how I felt before the appointment.  When I talked to Richard, he is of the opinion that these tests are the equivalent to a field sobriety test for drunks and even sober people can fail them.  I really don't think he will accept the test results when I get them...whatever they may be. 

So now I have to get past the holidays and move onto the testing phase of all this.  I'm really dreading the lumbar puncture because it will be done only with lidocaine for external deadening, but I can do it.  The MRI will just be annoying.

Cancelled Appointment

My doctor's appointment for today was cancelled due to the doctor having a family emergency.  It's been rescheduled for the 17th at 11:00 a.m. 

I called Simone yesterday morning (before the cancellation) and told her that I was very nervous and just wanted to cancel the appointment to which she told me to stop being like her (she often cancels appointments).  I guess this all worked out for the best and I can go another couple of weeks without being nervous!

Zingy Feeling

I had to take my youngest child, Madelyn, to the doctor today and while driving, I had some pretty intense electric zingy feelings running down my neck while driving.  It seemed to happen primarily when I turned my head.  They were so intense that I found myself gripping the steering wheel pretty hard.  Madelyn was very concerned and asked why my knuckles were white.  Strange thing about this is that when I first started having these sensations years ago, I noticed it when I was driving home after working out.  Obviously there's just something about me being in the driver's seat of a vehicle! 

Information Gathering

I've decided that I'm petrified to go to this new doctor.  What if there really isn't anything wrong with me and I'm just bonkers???  That terrifies me! 

I've been reading on the net this morning and found the following:

Cognitive Problems

About 50% of people with MS will develop some cognitive problems. Symptoms include a slowed ability to think, reason, concentrate or remember. Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities. Yet, it is important to remember that for the person experiencing MS, cognitive changes may be equally or even more devastating than physical changes. Cognitive difficulties are common among people who have had the disease for a long time; however they may also appear early on, occasionally from the onset of MS. Among those individuals affected by cognitive disturbance, the most common problems are:

• Memory recall, particularly remembering recent events.
• Slowness in learning and processing new information.
• Difficulty with reasoning, such as analyzing a situation, making a plan and follow through.
• Poor judgment.
• Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation.

Cognitive problems associated with MS are not related to level of physical disability and can affect people with few physical symptoms of MS. In addition, cognitive problems can develop rapidly during a flare-up of the disease. In these cases, the cognitive problems can decrease as the disease moves into remission. It is important to note that cognitive impairment in MS bears little resemblance to the intellectual decline in Alzheimer’s disease. People with MS virtually never experience severe, progressive cognitive decline. Cognitive impairment in MS is typically mild and may stabilize at any time.

Individuals with MS and their families should be aware of potential cognitive problems. Recognizing and learning about certain impairments can reduce misunderstandings about a person’s apparent forgetfulness, carelessness or seeming indifference. Through open communication, families can be supportive and help the person cope with the changes that they are experiencing. Understanding symptoms related to MS can also help to reduce fears about losing one’s abilities. Sometimes, it is helpful to start talking about cognitive and other changes that might occur as a result of MS before they happen, so the individual with MS and the family can be sensitive to and aware of potential changes.

Discuss suspected cognitive impairment with the person’s doctor. In some cases, depression, side-effects from medications and even interactions between medications can mimic cognitive problems and can be treated separately. A neurologist can perform a brief evaluation to test for severe cognitive deficits. A neuropsychologist who has expertise in diagnosing and treating MS may be recommended to perform a more complete evaluation to test for subtle cognitive changes. If cognitive problems are found, the neuropsychologist may assist individuals and their families in coping by working on rehabilitation and strategies to help with cognitive changes.

These strategies may include memory aids such as writing down all appointments, making check lists, or using memory “tricks” (e.g., visual images or rhymes) to help remember. Practicing concentration and focus when listening will also minimize distractions and help the person retain new information.



I also found this: 

Some of the specific cognitive deficits observed in people with MS are:

• Memory Dysfunction. This is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory deficit most often reported is free recall of recently learned material. Free recall is the ability to get to a memory instantly - MS rarely seems to affect a person's ability to get items into the memory banks - just our ability to get it out "right now". What also does not appear to be compromised very often is a person's ability to understand and learn new concepts nor the speed at which they do so.

• Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects.

• Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests and often start off matching control subjects but their performance tails off as the test progresses.

• Impaired Planning Skills. One study reported that 40% of people with MS are less able to plan things than healthy controls. This study was criticised because it was a timed test and that the people with MS all had the Secondary Progressive form of the disease.

This actually hit home the most:

Cognitive dysfunction as a symptom of multiple sclerosis (MS) may be the one that makes me the saddest. I can get angry at the “MS hug” and frustrated with trembling hands, but being mad at how my own brain and though patterns are misfiring is a little too complicated. It is also the symptom that is the hardest to talk about with people without MS, as it often comes across as a lame-sounding apology for being “ditzy” or is met with people mentioning how forgetful they have also become since they had children or turned 70.

 

Sure, we all misspell words sometimes or leave something off a list. However, many of us with MS have a moment that we can point to as evidence that the cognitive neurons are not as robust as they used to be. My “big moment” came when I intended to dash into a store to pick up some last-minute holiday wrapping supplies. I got into the middle of a big display area of giant shelves of shiny, colorful paper and ribbons – there was loud Christmas music blaring, twinkly lights blinking everywhere, and people grabbing at sale items while screaming at their out-of-school children. All of this “input” combined to not only completely make me forget what I came for, but to completely immobilize me. I don’t know how long I stood there staring uncomprehendingly at the whole scene before something jarred me back to reality and I fled from the store, empty-handed.

What Does It Feel Like?

While cognitive dysfunction feels different for everyone and can change daily, many people with MS can identify with part or all of the following descriptions of MS-related cognitive problems:

• Problems with Abstract Conceptualization: Put simply, this is difficulty with figuring things out in the “abstract” in a way that is going to lead to a desired outcome. It means that people get easily overwhelmed if something is too complex, as it is hard to organize thoughts and tasks, to apply lessons learned from multiple past experiences, and to be “flexible” enough in their thinking to come up with alternate solutions if a problem arises. This can negatively impact judgment.
• Short-Term Memory Deficits: The most common form of cognitive dysfunction in MS, this usually manifests in things like forgetting whose number you just dialed, going to the pantry and not knowing what you went there for (even though you just looked at your recipe), or being unable to remember if you took your pills or not. You may also find yourself repeating a sentence or part of a story to someone that you just told it to, not aware that you had already said it.
• Attention Difficulties: This can manifest as “distractability” or simply inability to keep your mind on a task. You may find that you are unable to multitask or that even minor ambient noise, like the television or music, can make it virtually impossible to concentrate on things like reading or performing sequential tasks, like those involved in cooking.
• Slower Speed of Information Processing: This includes all the aforementioned symptoms, and it means that the brain simply cannot take in and prioritize all of the information coming at a person at once. This includes problems processing language (spoken or written), sensory information (visual, sounds, smells, touch), spatial information (like that involved in navigating while driving), or more abstract things like social cues and reading people’s emotions.

I am forever forgetting things.  I'll lock the front door at work and then go back to check it multiple times, drive from Clyde to check the door, or sometimes call the office next door to go check it. 

I can go to dial a number I've known by memory for years and just be blank. 

I can go to get something out of the closet and not even remember why I'm in there until I retrace my steps and sometimes even then I won't remember. 

I'll ask a question and then turn around and ask the same question...not remembering that I just asked it. 

I forget to grab breakfast in the mornings on my way out the door to work or even forget to put on make-up. 

I can be told something is needed at school and unless I make a note - I never remember. 

I can think about what I'm about to say, but it just doesn't come out the way I heard it in my head - I can't seem to make the right words come out of my mouth or pronounce them correctly.  Strangest part about this complaint is that it seems to happen at home more than anywhere else.  I've decided I'm just obviously in my comfort zone and therefore I'm more relaxed and not trying as hard to cover this up.

Sometimes I just can't compute what is being said to me and I'll ask the most ridiculous child-like questions, which just ticks people off. 

I JUST CAN'T HELP THESE THINGS!  I get so frustrated with myself and with people who think there's something wrong with me or that I must be on some medication causing this.  Maybe this is why I'm becoming more of an introvert the older I get....I just don't want to be seen as stupid, which is how I feel when I say something incorrectly. 

This is why I'm scared to death to go to the doctor.  I really don't want to be told I'm crazy because sometimes I truly feel I am.  Maybe I'll ask the doctor if she can just run the tests based on past records and then depending on the results, I'll tell her all this.

This is also why I've only told 2 people about this blog.  They probably already think I'm nuts so my rants are no big deal to them.

ON TO SOMETHING ELSE:

I told Simone about my appointment on December 1st and she wants to go with me.  I really hate for her to take time off to do this, however I'm grateful that she's willing to do so.  My mother went with me the first time I had an appointment with the neurologist years ago and I felt like she wasted a trip from Odessa.  She stayed in the waiting room for what seemed like forever and then we left with only a MRI being ordered.  Mom said that she didn't feel like it was a wasted trip, but I did at the time.  Mom pointed out that even though this new doctor will order another MRI, something might be verbally diagnosed or addressed which might be upsetting to me.  With Simone there, she can ask questions I might not think of or remember something that might be said later.

LAST THING:

I've been having the electric zingy things both yesterday and today.  So weird!

Appointment with New Neurologist

Well, the ball is now rolling.  I have an appointment with a new neurologist on December 1st.  Dr. Stephenson is apparently new to the Abilene area and has only been a doctor for 4 years.  I'm going to be optimistic about seeing someone fairly fresh out of medical school vs. the old neurologist, who was an established doctor (also a professor at a local university).  There was a delay in scheduling my appointment immediately because they were obtaining my complete record from Dr. Vaughan. 

I'm very nervous about this appointment.  On one hand, I really don't want to be diagnosed with M.S., but on the other hand, I'd really like to know that I'm really not crazy and there really is something medically wrong with me.  I feel like I'm on an emotional roller coaster right now, because of this and other reasons not mentioned on this blog.  I guess we'll just see how things go on the 1st!

Dr.'s appointment

My primary care physician called on Tuesday and advised I would have to make an appointment to get a referral to a neurologist.  Yea...a trip to the doctor that I really don't need.

So I went today and met with a nurse practitioner (Marilyn) that I've not seen before.  She talked to me for almost an hour, which I must say was totally unexpected.  Marilyn said that there were several things she would like to see happen, but first and foremost, a trip to the neurologist was in order.  She spoke highly of the neurologist that I'd seen and thought that it was very admirable on his part to handle my case the way he did given my lack of insurance.  Marilyn spoke at length about depression, which I told her I didn't have.  She questioned sleep apnea (regarding my being tired all the time), several different blood tests due to my hysterectomy 7+ years ago and being almost 40, my dopamine, serotonin, and norepinephrine levels, thyroid, etc.  Marilyn said that after I am treated by the neurologist, she might have me visit an endocrinologist as well as put me on a low thyroid medication.  Marilyn also said that she would probably consult with the neurologist regarding the suggested blood tests as well as telling me I'd have to have a MRI and possibly a lumbar puncture. I told her I was fine with the MRI, but wasn't too sure about the other test. 

Marilyn did not state any suspected condition on my file, only symptoms.  I told her that I've been paranoid for so long about having the "M.S." label put on my record that I'd prefer not to see it on her file until we have a definitive diagnosis.  She completely agreed. 

I guess that's it for now.  I'm awaiting a call from the new neurologist to schedule an appointment. 

Sleeping Limbs

The last few nights when I've gone to bed, I've noticed something a little strange.  While lying either on my back or side, my right leg and hand go to sleep.  Well...I say they go to sleep when really I feel that tingly feeling you get when your body part has been asleep and then "wakes" up.  You know what I mean - when you don't want to move it or God forbid someone touch it.  It is really weird because I'm laying in bed when it happens.  My leg and hand are not bent funny or in some sort of kink. 

So I haven't heard back from the doctor's office.  I don't guess I'm really a priority in their eyes.  I'm kind of glad in a way!

Neurologist

I called the neurologist, who I've seen since 1997, and told them I was ready to undergo the recommended testing only to learn he doesn't accept my health insurance.  DANG!  So I called the neurologist that they referred me to only to be told that my primary care physician would have to refer me to the new neurologist and that their office would have the correct forms for referral.  I called my primary care physician and asked them to refer me to this new neurologist and the nurse told me I just needed to call the new doctor to set up an appointment and then call my old doctor to request records.  I firmly explained to her that I'd already spoken to both offices and that she had the forms to make the referral.  She was not happy that she would have to make the referral so I asked if I needed to make an appointment to come see the doctor, which was a waste of his time and mine since I know what I need and who I need to see.  She sighed quite dramatically and said she'd get the referral made Monday.  JEEZ....I finally decide to go through with this and I run into roadblocks all the way!

I moved all my stuff back to my room and Richard questioned what on earth I was doing.  I told him that I was moving back to my bed!  I also told him that I was in the process of seeing the doctor and that if I receive an official diagnosis, it really won't change anything.  I also told him that IF he gets the bright idea of dumping me ever or drops me from his insurance....I will make him pay through the nose!

Do I like him tonight?  Nope.  Do I feel better?  Nope.  But I will sleep better!!!

Frustration

So I tried to talk to Richard tonight and he totally shot me down as far as conversing goes.  When I brought up the comments he made last week, he asked..."well, are you on something?"  I guess it's back to Julia's room.  

Weird

So I'm still sleeping in Julia's room.  Yeah - I know I tend to carry a grudge, but that's just me.  One of these days Richard will ask what I'm upset about and I'll lay it on him!

I woke up last night with the weirdest itching on my left foot.  It was awful!  I had intense itching from where my toes adjoined my foot down to the tips of my toes.  I could have drawn a line on my foot to indicate where the itching was and wasn't.  I stumbled to be bathroom, in my melatonin induced haze, and found the tube of hydrocortizone, which I used the majority of.  I laid back down and couldn't stop the itch.  I wondered if I had athlete's foot all of a sudden, but my feet looked perfectly normal, other than scratch marks.  I told my self I wouldn't scratch anymore, but I just couldn't stop.  I wondered if I'd caught something from Julia's bed.  I got back up and drug my feet repeatedly across the carpet in an attempt to stop the incessant itch.  Finally, I grabbed an ice pack from the freezer and decided since nothing else was working, I'd freeze those stupid nerve endings that were obviously causing the itch!  Sure enough, after about 20 minutes, the itching stopped and my foot was completely frozen.  I actually fell asleep with the ice pack on my foot and it didn't bother me at all....which is surprising because after all, who likes an ice pack directly on their skin for any length of time.

I'm anxious so see if this new found remedy works on other itches or if it was just a one time thing!

MAD

Last night, my husband made me so mad that I decided to go ahead and go back to the neurologist so he could run his tests and confirm his clinical diagnosis.  But then, as my dear sweet Simone pointed out, it wouldn't really matter if I had an actual diagnosis, which would explain things better to Richard, because he would be totally unsympathetic and say that I was just using "MS" as an excuse.

Sigh...she's right.  It just made me so mad when he told me that I needed to stop taking whatever medication I was on because of what it's doing to me.  HELLO?!  What medication?  I'm not on any!  I'm just screwed up!!!

Sometimes I just can't help some of the things I do, the way I act, how I feel, etc.  If I could control these things, does he not think I would do something? 

Back to last night.  I was so mad and hurt and angry I slept in the other room, which is really stupid on my part because I don't sleep as well and my shoulder hurts.  But I decided that unless there is something specific that needs to be said to him, I'll just keep my idle chit-chat to myself.  There's no reason to converse with him unless it's about something specific.  Still makes me upset though...even just typing it here.

I found the following diagram last night on my phone and it points out so many areas that I'm having difficulties with.  Now I'm to the point where I need an official diagnosis so I know that I'm just not a bipolar person who has become antisocial on occasions for no reason, why I slur and/or mumble sometimes,  a  reason why I can't remember what was just discussed and then I turn around and ask about the same thing, why one of my ears and my neck have lost sensitivity, why I have electric "zingy" feelings down my back, why I itch insanely, etc.  The list goes on and on.

I'm going to put this away in a box as my friend Kim says.  No reason for me to continue to be upset and let it affect me.  Sounds good in theory, but I'm still mad!

Source:  http://en.wikipedia.org/wiki/Multiple_sclerosis

MSConnection

I somehow got on this mailing list and started receiving a magazine every once in a while.

http://www.nationalmssociety.org/chapters/TXH/index.aspx

There's an article entitled "Evidence Supports Autoimmune Nature of Neuromyelitis Optica (NMO), an MS Mimic" in the Summer 2010 issue.  After reading the article, I looked up NMO and found that there is no cure for it.  So I'm not sure why they took up the space to put this story out there for people who suspect they might possibly have MS or even have a diagnosed case of MS because it doesn't really help them in any form or fashion. 

I'm only blogging about this so I can reference it in the future and throw my magazine away. 

Makes ya wonder why I'm taking up blog space about this when I just slammed the magazine for taking up space with the article!

Nuts

I've decided that I'm nuts, bonkers, delusional, crazy, whatever.  I couldn't possibly have MS.  Nope.  Don't have it.  I've created health problems because I've read about them on MS websites.  I am obviously a victim of the power of suggestion - comments made by doctors. Optic neuritis twice?  It's a fluke thing.  I don't have itches that drive me out of my mind caused by anything other than things in my environment that cause itching....possibly allergies.  I'm tired all the time because I'm a mother and wife, I work full time and take on extra work when needed for other law offices - I'm just overextending myself.  See?  There really IS an explanation for everything!

I think my husband is nuts too.  He informed me last night that I needed to put my health insurance cards in my wallet instead of leaving them on the kitchen table...just in case something happens to me.  When I scratch non-stop, get fed up, state "I'm not scratching anymore", and end up scratching like crazy, he whispers to me "scratch, scratch, scratch".  See?  I'm not the only crazy person in my house.

Itchy

***DISCLAIMER - KINDA GROSS***

I AM TIRED OF ITCHING!!!

The itching on my head is getting better, but my legs are driving me nuts.

The back of my legs are covered in scabs.

I continually knock the scabs off because I have to scratch.

My sheets are blood stained because I apparently scratch in my sleep.

My husband probably thinks I have cooties or something because I'm always scratching.

Benadryl doesn't work.

Hydrocortizone doesn't work.

Lotion doesn't work.

GGGGGGRRRRRRR!!!!!!!!!

New to Blogging

So this is my first real attempt at blogging.  I'm assuming that while there is much I can blog about, which I'm sure I will at some point, this will be theraputic for me as I deal with things that seem to keep popping up since my "clinical diagnosis" of MS. 

In March 1997, I was treated for bimaxillary congestion, decreased vision in the left eye and subsequent loss of vision.  According to the doctor's records, "the patient had optic neuritis and did not fulfill the diagnostic criteria for multiple sclerosis.  There were some changes seen on the MRI scan of the brain but these were nonspecific".  I was treated with IV Solu-Medrol, which caused all problems to go away.

Flash forward to March 2009.  I read late into the night on March 14th and when I woke up the next morning, my right eye was hazy and my vision was diminished.  My first thought was I stayed up way too late reading and just made my eyes tired.  The problem persisted, worsened, and started to hurt.  I immediately knew I had optic neuritis again and attempted to schedule an appointment with the neurologist, however I was told that he would only see me by referral.  So....I went to the eye doctor, who confirmed my thoughts, and referred me on after telling me that I obviously have MS due to the fact that I've now have had optic neuritis twice in two different locations.  The neurologist spoke to me quite candidly and said that I had to get on insurance, I had the right to refuse any and all suggested testing (wanted to perform a lumbar puncture as well as an MRI), and that by testing and confirming his suspicions, my medical record would always be red flagged with an MS diagnosis.  I promptly refused all recommended tests and we proceeded to IV Solu-Medrol treatment again.  During the in-office questioning, it was determined that I'd had some Lhermitte's like phenomenon down my spine and arms on numerous occasions.  Also, the fact that I'd lost all sense of smell for 4 - 5 months after the birth of my youngest was also attributed to neurological issues by the neurologist. The doctor clinically diagnosed me as having multiple sclerosis and again, strongly urged that I do whatever I can to get on health insurance because the next "episode" might be far worse than losing eye sight. 

Okay.  So I've been "clinically diagnosed".  What does that mean?  Do I have MS?  Am I jumping to conclusions just because 2 different doctors have said MS?  Am I being a hypochondriac?  Am I reading too much on the internet?

I'm tired all the time.  I went to the doctor and had a complete blood panel done thinking my thyroid is out of wack, and it was completely normal.  Is this because of the "MS"?  I had two days a couple of weeks ago where I had the electric zings run down my spine.  Is this because of "MS"?  Sometimes it seems that I have problems with speaking - slurred, mumbling, etc.  Is this because of "MS"?  My thought process seems to not be what it was (I'm only 39!!!). Is this because of "MS"?  I have itching incessantly on my legs to the point where I bleed.  Nothing I do will stop the itch - it feels like it's inside my skin.  Is this because of "MS"?  Once in a while, there is a spot about the size of a quarter on my head that itches terribly for a week or so.  Again, it feels like it's inside my skin.  Is this because of "MS"?   I seem to have a nystagmus issue now.  Is this because of "MS"?  So many questions and yet no answers. 

Now that I have insurance through my husband's employer, I can go back to the neurologist for further testing.  But what if he doesn't stay with this employer and I end up having no coverage?  Do I really need this kind of red flag on my record?  While shopping for insurance this summer, once the insurance companies found that I'd had optic neuritis twice, they immediately told me I was uninsurable.  With the upcoming changes in the law regarding insurance and pre-exsisting conditions, I know that I will be able to get insurance....but at what price?

I am frustrated and confused.  I want answers and yet, I don't want answers.  What is a person to do?