Latest Test Results

I received the results of my MRI today and the report states "no significant change is seen in the appearance, size, or number of the white matter lesions. No abnormal enhancement is seen to suggest active disease on MR". YAY!!!!

My neuro actually asked about the CURCUMIN I've been taking, how much I take each day, cost, where I purchase it, etc. as she has several other patients she would like to talk to about it. WOOT! I asked her about the obvious changes in my brain as the "cog fog" is completely gone and she said that while the MRI won't indicate changes on the cellular level, i.e. mylin, there is definitely something going on, the mylin is obviously being "rebuilt" and it's all good!

On the neurological test, I made a 100.  Holy Cow!!!  Everything checked out extremely well and I even did more than the doctor asked.

Doin' the happy dance!!!!!

Lack of Blogging

My mother recently asked about my lack of blogging and I really didn't have a good answer.  When nothing is going on, there really isn't anything to blog about.  I will try my best to come up with something now!

My MRI is less than a week away and I feel like I should take megadoses of Curcumin just to make the changes on my MRI even more pronounced.  But I certainly don't want to have some sort of weird reaction so I guess I'll just stick with the current dosage.  I'm actually nervous about this test because I can really see the changes that have occurred since my last test and want my doctor to be able to see them on the results.  Hopefully it's more than just extreme optimism!

Richard told me last night that my health insurance premiums are going up October 1 by approximately $100.00 per month.  Yay.  I'm already paying over $450.00 a month so what's a little more.  We are definitely in the wrong business!

Other than that, kids are good, hubby is good, life is good, and work is insane.

Okay...I've blogged! :-)

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.   

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?

Inclement Weather

Inclement weather - those are two words that should never be used together when describing weather in Texas. We are completely frozen here and school has been out for 3 days (and counting).  The airport is closed, the mall is closed, the Courthouse is closed...everything is closed!    We had rain, hail, and sleet Monday night that then turned into snow in the wee hours of Tuesday morning.  All in all, we received 6" of snow and a layer of ice under that. The high today is only 18 degrees and the low tonight is 9 degrees. Tomorrow is actually suppose to be 32 degrees and then Saturday is suppose to be 50. Hallelujah!  I just hope we are able to dethaw! before it gets cold again next week. 

BTW:  The doctor's appointment scheduled for February 2, 2011 was cancelled due to inclement weather.  They are suppose to call me to reschedule when they are back in the office.

Eye Twitches

My right eye has been twitching for over a week now.  No big deal...right?  Other than it's annoying as heck and people are obviously looking at my right eye instead of my face when we are talking, which is really weird.  And then to top it all off, my left eye started twitching so bad yesterday that I really couldn't see well out of that eye.  Thankfully that one didn't last more than a couple of hours.



A legal assistant next door, who just happens to also be a nurse, was talking to me this morning and she told me that my twitching was obviously a nerve issue.  Hmmm.....that made me wonder if there was an MS connection here.  I looked it up on the net and found that one of the common causes of eye twitching is nervous system disorders. 

Now I understand that eye twitches can be caused by anything and everything.  But what if it is the MS?  Does that indicate a flare-up or episode?  Is my brain being scarred because my eye is twitching?  Am I always going to be paranoid every time something happens to me?

Great Quote

So I found this on the National Multiple Sclerosis Society Facebook page and I absolutely love it!

Kudos to Karma Jones for the original quote and to Stephanie Cole for the graphic!!!

I have been doing quite a bit of research so I'm prepared for my doctor's appointment on the 2nd.  In with my research, I've been reaching out to others who I know have MS in an attempt to get information from them regarding their treatment, when they were first diagnosed, etc.  It strikes me as very strange when someone with MS tells me that I need to get a second opinion, after I tell them my history, or they tell me that I really don't or can't have MS.  I've had a second opinion, which just happened to coincide with the first opinion, I have the MRI results which confirm the first and second opinions, and I've had a hypothetical opinion given to me by a MS specialist.  What more do I need? 

Another thing that strikes me as very strange is that now I'm told that I can't have MS because I don't look like I have MS.  Do people with MS look different than everyone else?  Are they suppose to be marked or branded or have a scarlet letter or some other telling sign?  I guess I should be very thankful that I don't have "the look of MS" but it makes me wonder if people are discriminated against when they do have "the look". 



Video Link

I actually found the video below on the National Multiple Sclerosis Society Facebook page.  I am so thankful that I haven't had symptoms such as paralysis and other major issues....but from what I have had so far, this video is very descriptive and well made as far as trying to make people who don't have MS understand what a person is going through.

My MS.wmv

"Perspectives on Emerging Multiple Sclerosis Treatments"

I went to a seminar last night at the MCM Elegante regarding MS treatment options featuring Dr. Annette Okai from the Multiple Sclerosis Treatment Center of Dallas, a Baylor Health Texas Affiliate.  My dear friend Robyn went with me, which I owe her big time for because I didn't want to go by myself, and I actually had a good time.  Dinner was provided and it was a Mexican buffet (with good food and salsa I might add).  I kept telling Robyn she could leave or just duck out of the room, claim she had to go to the bathroom and not return, but she said she wanted to stay and that she was enjoying herself.  Crazy woman!!  We got tickled at a local neurologist who kept going back to the buffet and sighed quite loudly when the food was taken away.  The seminar was presented by the company who makes one of the big MS drugs. 

After going over what MS was and available treatments,  the doctor and drug rep. took questions from the people attending, which was very interesting.  I learned so much tonight from Dr. Okai and am looking forward to my appointment with Dr. Stephenson on February 2nd!  After the seminar, I spoke to the Dr., on a hypothetical basis, regarding my MRI lab report...which I just happened to have with me.  She said that hypothetically speaking and without knowing any of my history or looking at the MRI slides, I have a high probability of having Multiple Sclerosis.  (Dr. Stephenson's nurse keeps making me question what the doctor actually told me in my last doctor's appointment because of little comments she continually makes.  When I question her comments, she talks to Dr. Stephenson and then relays exactly what the doctor already said.  I need to stop talking to this nurse, but she's just so darn likable!!!) 

During the question and answer time, I asked about the MS and mono connection and Dr. Okai said that mono has been implicated to cause MS, it's not proven.  Chicken pox and other various viruses and/or illnesses were also questioned by other people.  When asked about a special diet, Dr. Okai said that she tells people to follow the diet that your mother wanted you to eat when you were younger (she doesn't know my mother) and she encourages her patients to just eat a balanced diet.  She isn't a fan of cutting out carbs, fat, lipids, etc.  Dr. Okai said she personally avoids preservatives and I'm going to go out on a limb here and say that she also avoids artificial sweeteners because I saw her using sugar packets in her tea.  Dr. Okai said that MS is a young person disease and it occurs during the "productive years".  Most people are diagnosed between the age of 20 and 50, however some are diagnosed much younger and older.  Dr. Okai said all of her patients are Vitamin D deficient and that after testing new patient blood levels, she gives them a a high dosage prescription for 6 months.  After that, she maintains patients on 2,000 units daily.  Dr. Okai said that Vitamin D is proven to reduce relapses and that it contains anti-inflammatory properties.  She went on to say that lesions are smaller with higher Vitamin D levels.  We also talked about CCSVI, which has been a hot topic in the MS world for several years thanks to Professor Samboni of France.  Without going into detail, Dr. Okai said that CCSVI can not cure MS and only helps symptoms and further said that increased blood flow to any tissue is going to cause good health.  She also said that Professor Samboni has changed his tune admitting it could help MS symptoms instead of curing MS as he previously claimed.  I guess the last really big thing was about medications.  The main goal of doctors in prescribing medication is to reduce frequency of attacks, reduce damage to the brain, and reduce progression to disability.  She used the analogy of teaching old dogs new tricks when she was discussing medicating even when a patient doesn't have symptoms.  MS can still be doing things in your body even though you don't realize it and you need to "train" it for when the episodes or relapses occur.  I asked Dr. Okai if a person could kind of have MS or have MS slightly or was that like saying a person is kind of pregnant when either they are or they aren't pregnant.  After some laughter, she said you either have it or you don't.  (Dr. Stephenson's nurse again planting things in my head!)

After sitting through all of this, I think that I probably have Relapsing-remitting MS (RRMS) because it is the most common form of MS affecting 85% of all newly diagnosed people and because relapses are usually followed by partial or complete recovery.  She did say that symptoms can remain inactive for long periods of time.

All in all, it was a very good seminar and I definitely have some answers to the questions on my list! 

Robyn - if you happen to read this some day... thank you for being so great about sitting through this with me!!!!

Random Stuff

Conversation via text on Saturday night with my almost 16 year old:

Julia:  So how are you doin?

Me:    Good - watching the Hurt Locker and about to go soak in a hot bath!

Julia:  Ohh.  That's a good movie.  And good. Lol.  A hot bath sounds goodd.  Are you feeling alright today?

Me:    Lol why are you asking me that? (Weird that she asked twice about me in one conversation - 15 year old here!)

Julia:  Just checking on you.  Lol

Me:    My back is much better today and my bruises are fading.  Woohoo!

Julia:  Good :) lol.  Our church has you in their prayers.  Mine as well.

Me:    You do know that I'm okay...right?  There will just be times that I don't feel my best and will probably have to get on some meds.

Julia:  I know.  I just love you.  And it scares me a little.  And I care about you.  I don't want you to go through any of that any more than you do.  And I believe that God can heal you completely.  Which is why I'm praying.

Me:    Don't be scared because I'm actually relieved to know what's going on with me.  Now I can get treatment since we know what's going on.  Prayers are always good too though!!!

Julia:  Ok. Well I love you.

Me:    Love you too!  I'm going to soak.  Good night Sweetie!!!

Julia:  Night Mommy.

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I have the most amazing kids!  Jonathon, the 22 year old, is planning to attend my doctor's appointment on February 2, 2011 if his schedule allows (work and college).  Julia, the 15 year old, sends me random texts about how I'm feeling and calls me frequently.  Madelyn, my almost 9 year old, has been extremely helpful around the house and is constantly inquiring about my back, etc.  She knows something is going on, but doesn't know all the details.

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I've started following the National Multiple Sclerosis Society's facebook page.  They have so many discussions that seem to be helpful so far!  However, some of the things people post on there are really scary.  I told Richard last night that "some of those people on there are so SICK" and he promptly told me that I'm one of those people now.  OUCH!

www.facebook.com/#!/nationalmssociety

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I've started a list of questions to ask Dr. Stephenson at my next appointment:

1.  How many lesions are on my brain and what type are they?

2. What type of MS do I have?

3.  What treatment is recommended?

4.  What is my long term prognosis?

5.  What were the results of my neurological tests performed in the office?

6.  Though my 1st episode of Optic Neuritis occurred at age 27, will my M.S. not be bad since I wasn't diagnosed until 39?

7.  Can I just ignore this and it'll go away instead of taking treatments when I don't feel bad?

8.  What is the M.S. and Mono connection?

Radiology Report: MRI Brain Without and With Contrast

I received the radiology report today and it states the following:

INDICATION:  Demyelinating disease.

FINDINGS:  Multiple white matter lesions are seen to involve the periventricular white matter as well as the corpus callosum.  Some mild degree of subcortical white matter involvement is also seen.    There is no evidence of midline shift or mass effect.  The brainstem and cerebellum appears normal.  The calvarium appears normal.  Orbits and its content appear normal.

IMPRESSION:  Multiple white matter lesions seen to involve the supratentoril of the brain most consistent with multiple sclerosis.  

I guess this is a wee bit of a change from the doctor's notes in 1997, which stated "there were some changes seen on the MRI scan of the brain but these were nonspecific".

I've been asked if I'm scared now that I know I have MS and my answer is always the same.  I am enormously relieved because now I have answers to the questions I've been asking for quite a while.  No one wants to have any kind of illness, me especially, but at least with a diagnosis, I can address my issues head on and find medicines and or modifications to my lifestyle that will make my symptoms better.  I can't fight what I don't know that I have!

Funny!

One of my client's called today to see how my procedures went yesterday and what the outcome was.  I told her about everything and after a very long pause, she asked me how long I had.  Now keep in mind this woman is an ultrasound technician so she is familiar with the medical field.  After being shocked by her question and finally finding the right response, I told her that I didn't receive any news indicating I was dying.  She cracked up and then said..."no, no, no...how long until your follow up appointment?"  

Very awkward moments believe me!  I'm now wondering if that is going to be a common reaction to my MS diagnosis. 

I did talk to Dr. Stephenson's nurse, Yvonne, today to see if I could get a copy of the MRI report faxed to me.  She is suppose to get it to me in the next day or two.  We also talked about scheduling the lumbar puncture because she felt sure that Dr. Stephenson would want it performed.  I told her we could go ahead and schedule it, as long as I feel no pain and get lots of feel good drugs, so we could go over the results at my next appointment.  Yvonne was going to speak to Dr. Stephenson and get it arranged.

My back is killing me today!  I am definitely feeling all 4 of the needle jabs and I am walking very carefully as to not jar anything.  Even driving the van hurts.  I'm being optimistic though...hopefully tomorrow it will be much better! 

Test confirming Multiple Sclerosis

So I slept through my MRI's today with the assistance of some anxiety medication and a pair of ear plugs.  I asked the technician if I snored and she said that I breathed kind of different a couple of times and they had to redo 2 takes.  LOL  Testing started around 9:15 and was over at 10:45.  I had quite a nice little snooze.

My lumbar puncture didn't go so well.  Dr. Stephenson shot some lidocaine into my back to numb me up, however it didn't go deep enough into my back.  After poking around with the syringe, she decided to pull it out and try to numb a little deeper into my back.  Then she put the syringe back in, but couldn't really get anywhere because she thinks I have calcification on my vertebrae.  I told her to keep going, but she said she really didn't want to torture me and to continue, it would be torture.

Dr. Stephenson was able to pull up the pics from my MRI and showed specific changes in my brain and quite a few lesions.  She said that with the lesions and my clinical records, she was diagnosing me as having M.S.  We discussed going to the radiology department to have the lumbar puncture performed to verify the MRI results.  The dr. said that regardless the results from the lp, her diagnosis would remain the same. 

I am to follow up in 4 weeks and bring along a family member and or close family friend so we can discuss the MS diagnosis and a treatment plan.  Dr. Stephenson would also like to run a visual evoked response or potential (VER or VEP) test due to my having had optic neuritis twice.

I'm going to find out if I can get a copy of the MRI report and hopefully I can post something on here about that.

On a separate note, Richard sat and read the small booklet I brought home from the dr.'s office, which is a very good thing.  I'm going to try to get him and Simone to go to the follow up appointment with me.

Guess that's it for now.   

So Nervous!

Tomorrow is the day for my MRI and lumbar puncture.  To say that I'm nervous about the lumbar puncture is an understatement.  I'm scared to death!!!  I hate needles.  I never had a spinal with any of my three kids because I was terrified of the needle being inserted into my spine.  My spine and spinal fluid are something I really don't want messed with - I like them fine just where they are and untampered with.  I keep telling myself to put on my big girl panties and quit acting like a wimp because everything really will be okay....but I'm still terrified!

On a separate note:  I received a copy of my blood test results and I am happy to say that I don't have cat scratch fever, lyme disease, or sjogren's syndrome.  From what I could tell (layman here), there was nothing abnormal.  My sedimentation blood level was on the low end of normal (1 out of a 0 - 15), but I really don't know what that means.