Visit with Dr. Stephenson

I had a really great visit with Dr. Stephenson today.  She was very concerned about my eyes, but I assured her that all was well.  (Since my last blog, I had another eye problem which Dr. Carter prescribed TobraDex eye drops and Doxycycline for.  I was quite sure that I was getting optic neuritis again, but I apparently had something else going on.  I was weepy most of the day last Monday because I just couldn't face dealing with that again.  The IV steroids suck!!!!) 

Dr. Stephenson asked about what I've decided regarding the Copaxone.  I told her of all the lifestyle changes I've been making since January and she was very pleased.  I also told her about all of the supplements I'm currently taking and I gave her some information I had printed out regarding the curcumin and cod liver oil.  Dr. Stephenson took the literature and said she would read it.  I questioned whether all of her patients were so wishy-washy regarding treatment as me and she said that MS is a very big thing to deal with as is deciding on the best treatment and that yes...all patients are typically "wishy-washy" as I put it.  We mutually decided to try the supplements for 6 months and to run another MRI in September.  If at that time I've developed new lesions or show any activity/changes/etc. at all, I will promptly go on Copaxon...no questions asked.

I talked to her about the itching again.  I told her that we discussed it before, but this time I brought information from the National MS website regarding itching.  She read over it and said that it all makes perfect sense, but that she just hadn't had anyone mention the itching.  She prescribed 300 mg. Neurontin to be taken each night to help and I'm suppose to call her back in 2 weeks to let her know how the medication is working.

As before, Dr. Stephenson pointed out that I could at any time ask for a referral to a MS specialist in Dallas.  I explained to Dr. Stephenson that I am very comfortable with her as long as we are able to logically discuss my medical needs and negotiate my treatment. 

All in all....I'm quite pleased with my visit today and I'm really liking Dr. Stephenson!

New Eye Problems

Yesterday I noticed this funny opaque looking stuff on both of my eyes.  I thought it was just eye gunk and tried to rinse it out with saline solution and then wipe it off with my finger, but nothing would help.  It was still on my eyes this morning.  I know I'm quick to jump to conclusions now, but I'm just so paranoid about my eyes since I've had optic neuritis twice resulting in damage to my optic nerves.  I called my neurologist's office, however she was unavailable and I was told to call my primary care physician.  After talking to my mother, I decided to call an opthamologist and was able to get in to see Dr. Troy Carter today. 

After several tests, Dr. Carter said that I have Salzmann's Nodular Degeneration of the Cornea.  It is considered rare, however of those diagnosed, it is found predominantly in women in the 6th decade (50's).  Medical therapy consists of lubrication, warm compresses, and topical steroids. Dr. Carter said that when the nodules become bothersome all the time, he will refer me to the cornea specialist he consulted with, and sent pictures of my eyes to, today for KP  followed by a Excimer laser to smooth the surface after removal.

I have to go back next Tuesday for a couple of more tests on my optic nerves and those results will be sent over to Dr. Stephenson's office.

You know, I really haven't ever had any major health problems so this eye thing on top of the recently diagnosed MS to getting ridiculous.  I feel like my warranty has run out!  I'm going to end this post now because anything else on here will just sound like whining. 

http://www.images.missionforvisionusa.org/anatomy/2007/02/salzmanns-nodular-degeneration-of.html

Shared Solutions

Shared Solutions just called and advised they will pay up to $1,200.00 a month on any co-payments for Copaxone.  So in between insurance and this plan, I will be on a $3,000.00 per month medication for just the price of my monthly insurance premium.  Wow - they sure make it easy for people who actually want to inject medication daily!

I am so torn on what to do.  Do I take their medication (even though it's shots every freakin' day), go at it from a homeopathic direction (I'm up to 27 different vitamin and herb pills each day now and I'm already tired of it), or just say screw it - I'm not going to do anything and just take my chances (which is really where I'm at right now)?  Decisions, decisions, decisions.  I wish I had someone to talk to who would just make a decision for me.  Remember....MS affects a person's ability to make plans and decisions!  *Sigh*  I really don't know what to do so I think I'll just do nothing for now.

VEP and Lab Results

Yvonne from Dr. Stephenson's office called today and advised all of the lab work was fine from the most recent round, other than my chloride level being high, and that the VEP results were in, however she couldn't go over them with me as Dr. Stephenson had yet to sign off on them.  I asked her if she could just read me the report and she said  the results only contained one line which stated "central and lateral slowing in the optic nerves".  Hmmmm.  I'm obviously still in the land of confusion!  When Dr. Duke and I were visiting before the testing began and he questioned why I thought I was there, I told him I thought I was there to check my optic nerves.  He said that no, I was there to check the demyelination occurring.  But the report he prepared was specifically regarding the optic nerves.  I just don't know what to think about these medical professionals anymore!  Yvonne asked when my next appointment is and upon hearing April 11th, she moved it up to March 21st.  I've already notified Richard so he can go with me. 

VEP Test

Madelyn went with me today to the sleep lab at Hendrick Medical Center for the VEP (Visual Evoked Potential) test Dr. Stephenson ordered.  We both looked horrible because we were at a Girl Scout cookie booth sale in the 40 mph wind for several hours and of course my dear, sweet, wonderful child took the opportunity to take this pic of me and also shot several videos while I was unable to see what she was doing.

Dr. Duke was a very interesting doctor.  Madelyn said that if he grew his hair out a little bit and dyed it, he could be a clown.  The two of them cut up quite a bit and he even egged her on in taking pics. 

Dr. Duke and I visited a little while he was hooking me up to his machine.  He asked if I knew why I was there and I told him that I assumed the testing was because I'd had Optic Neuritis twice and they wanted to make sure my optic nerves were okay.  He said that no, the test was to see the extent of the demylination in my central nervous system.  As soon as the first phase of testing began, Dr. Duke said right off the bat that my reactions were slow, which means that sheath is coming off and that my treatment should be more aggresive than what he first thought based on our brief discussion prior to testing.  I told him that I didn't really want to be on any medication and he promptly told me that I should want my nerves to be intact.  Dr. Duke advised that I should be at 100 to 103 and I was at 108 and 109.   During the third phase of the testing, he said "You definitely have some stuff going on and between you, me, and the walls, I'd get a little protective and agressive in dealing with this."  (I am only able to say this with 100% accuracy because of the video Madelyn shot.)

I'm not sure what all of this means in regard to my deciding not to take the Copaxone.  I guess I'll have to wait to hear what Dr. Stephenson says in April.   

Rant

It was recently pointed out to me that I've been very unconcerned, blasé, and nonchalant about the whole MS thing.  It was also pointed out by another person that I have made it abundantly clear that I was tired of people making a big deal about me being diagnosed with M.S. 

I am well aware that people live full lives with MS.  I'm also well aware that it isn't a death sentence.  Furthermore, I'm a believer of mind over matter as well as garbage in garbage out.  I'm also a fighter so I'll battle MS with everything I've got.  I tell myself that this is really no big deal over and over.  It's just a speed bump along life's highway.  I tell people the same thing.

For anyone who actually reads my blog, please let me make this perfectly clear:  I am really scared to death by this diagnosis!  The last thing I want is pity, but at the same time, I don't want people to act as if everything is the same...because its not!   M.S. has consumed my life and it is always in the back of my mind.  Richard and I talk about it often.  I question if I'm doing things because of M.S.  If I've conveyed fearlessness in this, let me assure you that is very far from the truth.  Often times I bury my head in the sand when it comes to difficult things in my life.  But I'm afraid this is one thing that will still be there when I wipe off the sand.   

I realize that there really is a reason that I'm moody and antisocial.  I'm not the outgoing person I once was.  Some might laugh at that (talking about hubby here), but at one time, I was the first one out the door dragging anyone along who was available.  I'm also aware that there is a reason I can't remember crap ("cog fog" as 'they' call it) and sometimes say the wrong words.  There really is a reason I'm always stumbling into doorways and furniture.  The important thing is that people in my life realize these things aren't something I can control.

This blog is for me - not for you.  It is my one place to vent without criticism.  It's my one place to make notes for future reference as I can't ever remember anything. 

I'm really just trying to come to terms with all of this and don't mean to come across as neurotic or offend anyone. 

I'm just me. 

No drugs!

After attending a holistic meeting, talking with my chiropractor and with an iridologist, reviewing the available CRAB drugs, and discussions with Richard, I've decided NOT to start taking the Copaxone.  We have researched the internet regarding natural treatments for MS and today I bought B-100, Cod Liver Oil, Curcumin (which has been shown in laboratory studies to block the progression of MS), Ginkgo Biloba, and Vitamin D-3.   My kids are all very concerned about me not taking the daily Copaxone injections, however I feel like I should explore natural options before I inject myself with synthetic medications.  I've also begun to walk daily and am trying to modify my eating.  I'm not going to do anything radical (because I really like food), but I need to work on portion control, getting rid of white flours and artificial sweeteners, cutting out diet cokes, and avoiding pre-processed foods.  I think that when we go back in for my MRI next year, we'll be able to tell if these changes have made any difference and if not, then I'll consider going on the Copaxone.  I left a message for my neurologist to discuss my decision regarding treatment, however I haven't heard back from her, and I contacted Shared Solutions to postpone the Copaxone shipment. 

On a separate note:  my VEP test is next Sunday.  It will be interesting to see if I have any damage to my optic nerves other than what we already know about!

Kids Say the Darndest Things!

Madelyn was up early today to get ready for a field trip to Medieval Times in Dallas and while in the process of getting ready, I apparently asked her about something we'd just done.  She informed me that I needed a brain aid. I questioned what that was and she replied "you know, band aid, hearing aid....brain aid because you're always forgetting stuff Mommy".  I cracked up that she was so insightful, given the fact that she doesn't know a whole lot about what is going on with me, and yet had slightly bruised feelings!

Follow-up Dr. Appointment

The weather ended up not being as bad as predicted so my appointment wasn't cancelled and apparently God does want me to get treatment for this (see previous post)! 

Richard went with me to my appointment with Dr. Stephenson and right off the bat, she told him that she has diagnosed me with Relapsing Remitting Multiple Sclerosis based on the clinical data, my documented episodes, and the MRI results.  She then showed us pics of my MRI and explained the different lesions, including Dawson's finger lesions, which were all indicative of MS.  Dr. Stephenson said that my complaint of cognitive issues is very common with where my lesions are located.  At that point I asked her how many lesions I have and she started counting. "1,2,3,4,5,6,7,8,9...you know I usually don't count these but you have multiple lesions." Okay, so I know I have at least 9 lesions and apparently multiple more because there were spots on the other pics. 

I asked Dr. Stephenson about the neurological test results and she said that I missed a couple of questions on the memory portion of the test and that I had "jumpy" reflexes in my knees and that overall I did well.

Dr. Stephenson ordered a CMP blood test, which is a comprehensive metabolic panel of 14 blood tests that evaluate organ function and is scheduling a VEP (Visual Evoked Potential) test, which evaluates the visual pathways in a person's brain. During the test, I'll have to watch a video monitor with a moving pattern.  Watching the moving pattern produces electrical activity in a person's brain that is measured by several electrodes attached to a person's head. 

I questioned if Vitamin D could be used independently as a form of treatment and Dr. Stephenson said that no, it is used in conjunction with the available drugs. 

We went over the different medications available for MS and Richard and I decided to start with the Copaxone, which will have to be injected daily.  Copaxone is one of the CRAB drugs (Copaxone, Rebit, Avonex, and Betaseron) used to treat MS, however it is the only one that is not an interferon.  Copaxone is a synthetic compound made up of amino acids, which are thought to keep the body's T cells from attacking the myelin-covered nerves. Copaxone is the only drug that doesn't have flu like symptoms as a side effect and even though I would love not to inject daily, I really don't want to be sick every week.  If injecting daily is a problem or it just doesn't work for me, we'll try Avonex next.  In with the prescription, I will have a nurse from Shared Solutions come out and teach me how to auto-inject and answer any questions.

Dr. Stephenson would like for me to return in 2 months so that we can see how I'm doing with the injections and to touch base regarding the results of my VEP test.  After that, I will see her twice a year with annual MRI's unless I have a flare-up or an issue that I need to see her about.

Wow that was a lot of typing!  I just hope I noted everything so I can reference it next time I'm sitting in Dr. Stephenson's office.  This blog is so handy that way because I can access it on my phone and ask questions that I've noted on here!!!

Rescheduled Appointment

Dr. Stephenson's office called yesterday and rescheduled my appointment for tomorrow, February 9th.  Given the fact that we have another cold front coming in with temps only getting into the lower 20's tomorrow and snow/ice accumulations of 1" - 3" overnight, I highly doubt this appointment will happen.  I wonder if an appointment being cancelled twice is God's way of telling me I really don't need treatment?