July 8, 2011 Doctor's Appointment

I wasn't able to update my blog after my doctor's appointment on July 8, 2011 because I forgot my Google password.  Obviously I remembered the right one because I'm on here now!

I went to see Dr. Stephenson on July 8, 2011 as per her request and she performed her little neurological tests on me.  She started out by giving me 3 words to remember for later in my appointment.  Dr. Stephenson then did tests on my nerves, reflexes, vision, etc.  She said that I didn't show any signs of neuropathy and did well on everything.  Dr. Stephenson was very impressed in the fact that I seemed "more with it" than I have at previous appointments.  I attribute that to the Curcumin that I'm taking.  I told her that I religiously take it daily and saw results about 4 months into my homeopathic treatment.  She was pleased that I'm doing so well and said that if I'm able to control the MS with Curcumin, she would rather not see me take the prescribed medication.  I am still scheduled for an MRI on September 21, 2011 and a follow up appointment on September 22, 2011 so we can go over the MRI results.  I told Dr. Stephenson that I'm quite sure she's going to be blown away by my results when compared to my previous MRI results.  She just chuckled.

Dr. Stephenson walked me out and I asked her if she was going to ask me about the the 3 words she told me at the beginning of the appointment.  She said that she'd forgotten all about them and I rattled them off to her.  I also told her that she needed to change her words up because those were the same 3 words as my prior appointment.  Dr. Stephenson thought that was really funny because I couldn't remember all 3 the first time and yet I not only remembered them this time...I remembered that they were the same words as the ones back in January (or whenever it was).

The Power of the Facsimile!

Due to my continual itchies and problems communicating with my doctor's office, I decided to send a fax to Dr. Stephenson to clear up the confusion that seems to occur when I talk to her nurse.  I only sent the fax after I was talking to my friend, Karmen, whose sister-in-law is a doctor and commented about how her patients could (but don't) write her. 

So....here's the letter I sent to Dr. Stephenson:

Dear Dr. Stephenson:

I recently contacted your office to get a refill on my Gabapentin prescription and to see if adjustments could be made to my dosage.  There was some confusion apparently as Yvonne (the dingbat nurse) conveyed your concern about my taking the medication if I was itching.  I explained to her at that time that I was on the medication because of itching and do not suffer any adverse reactions from the medication.  I went on to explain that I needed the dosage increased from 300mg to 600mg as I sometimes have to take all three (3) pills each night before bed to control the itching that plagues me.  There are times that I have to take Gabapentin during the day; however I usually have the problem at bedtime or through the night.  The medication dosage was changed to one (1) 600mg pill daily (down from 900mg per day) for only 30 days, which is completely ineffective.  I read on the bottle to avoid alcohol as it will intensify the effect of the drug; however I am seriously contemplating becoming a drunk just to control the itches.  I’m scarred and scabbed over from scratching the itches and just need some relief!

I apologize for contacting you via facsimile, but I am at my wit’s end in dealing with the itching as is my husband (I keep him up during the night because of my incessant scratching even in my sleep).  I don’t understand why I need to make an appointment to resolve a medication issue from a problem we discussed on March 21, 2011.  It is my understanding that a maximum dosage of 1800mg can be taken daily.  Is this something that can be prescribed for me instead of just 600mg daily or is there something else that would possibly be more effective?

Please have Yvonne call me after you have reviewed this letter to see if there is any resolution that can be had prior to my follow up appointment on September 22, 2011.  I can be contacted during the day at (***) ***-**** or (***) ***-**** and my email address is athenasheffield@yahoo.com.

Thank you for your consideration in this matter.

I was at lunch today with my friend Shannon when my phone rang with a number I didn't recognize.  It was Dr. Stephenson, who just happens to be out of Texas on vacation.  She advised her office forwarded my fax to her and she wanted to discuss upping my medication with me.  Dr. Stephenson said that she gradually titrates Gabapentin over time, however since I've already taken 3 at a time in the evening...she will have her office call in a new prescription for three (3) 300mg  each night and one to two daily as needed.   Dr. Stephenson asked if I'd experienced any dizziness, lethargy, sleepiness, etc., which I told her that I hadn't experienced any adverse effects from the medication.  She went on to say that she wants to see me on July 8, 2011 so she can perform a neurological test just to make sure there are no adverse effects that I might not know to look for. 

So....my fax was very effective (yay!), I'm getting my medication upped (big yay!!!) and I have to go see the doctor, which I didn't want to do (boo!). 

The lesson learned here is that sometimes we have to go straight to the doctor, bypassing the nurse, whether it be in person, letter, or facsimile and that it's okay to contact doctors in ways other than just office visits!

All is well

I haven't blogged in a while because I've been extremely busy!  I still have crazy itchies and have scars as a result, however in the grand scheme of things....all is well and life is great!  I'm not so focused on reading anything I can regarding MS and haven't followed the MS websites like I was.  I don't think at this point in my life I need to make having MS such a  priority.  So I have MS.  Big deal!  I have so many other things in my life that require my full attention that MS just really doesn't rank high on my list of important things.  Plus, having my mind back has made all of this not seem like such a big deal.  Now if I can just get rid of these itchies, I'll really be really great!  (For examples of crazy itchies:  I woke up last Saturday night thinking there were bugs on my neck and ended up ripping off my gold necklace, which cannot be repaired, but I did find my diamond in the bed!  Then, I was laying on my side last night in bed and it felt like bugs were crawling on the arm I was laying on.  I had to tell myself that there couldn't be any bugs because they couldn't be under my arm and it's just my nerve endings.  Crazy itchies or should I be more specific and say crazy nerves?!) 

 

Improvement?

I've noticed in the last couple of weeks that I'm not quite as dippy and my memory seems a little better!  I'm extremely optimistic about the Curcumin.  I've stopped all the other supplements and only taking the Curcumin that along with the Neurontin for itching.  I just couldn't take 27 pills a day - it was too much!  I felt like I rattled when I walked plus the supplements would make my tummy feel not so good.  But...I'm sticking with the Curcumin until the MRI in September!  I asked Richard the other day if he thought my memory seemed better and he said that yes, I didn't seem as dippy as earlier this year.  Woot!!!  It's not just me that is noticing the changes!  I've been able to remember things like reminding Richard to get ice, invoice customers, and my sister's anniversary.  I am still dealing with the itchies, but that's okay because I can pop the Neurontin and if it's really bad, a couple of Benydril.  I really hope and pray that the lesions are fading and I'm not getting new dings on my brain.  What a thing for the doctor to see based on my previous MRI and the fact that she knew nothing about Curcumin before I took her the information.  Heck, she might take my improved results and pass them on to MS experts!  If anyone is actually reading this blog, please say prayers for my brain and for this to work!

Icky Pills

I've been religiously taking all of these supplements since my last doctor's visit....but I have to tell you....I AM SOOOOOO TIRED OF POPPIN' THESE NASTY TASTIN' PILLS EVERY SINGLE DAY ~ TWICE DAILY!!!!!!  Can't these companies who manufacture these natural pills make the gelatin capsules taste better or put flavoring in the gelatin or something so people can't taste the nasty stuff inside?!?!?!  I am horrible at taking daily medication, but I will show my doctor an improvement in September even if it means I'm going to have neon yellow pee forever and gag every time a pill goes in my mouth!

I just went back and looked at my last entry - it's only been like 14 days that I've been taking the herbs/minerals.  How on earth am I going to continue on this path when I'm already frustrated?!?!?

On a separate note, the Neurontin seems to be working, although I might need to get the dosage changed a little bit.  I didn't realize how well it worked until the night I didn't take it and kept Richard awake and scratched like crazy. 

Oh the things you'll read about on my blog!  :-)

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.