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.