I have discovered I am horrible with blogging...that or I am just too busy. Before I start in on my health, let me first explain why I am so busy.

I enrolled in college and have been taking 2 to 3 classes each semester in addition to working and still doing Richard's payroll. I was only working part-time, but my boss brought me on full-time so I spend a lot of hours at the law office. Richard hired a woman to take over the books back in January, but flash forward to today's date (06.20.2019) and she still can't do payroll so thus the reason why I am doing it.

On to my health...

I recently went in for MRIs of my brain, cervical spine, thoracic spine, and lumbar spine due to having a MS hug for almost a month. My brain is stable, but the report states that I have "at least 6 right and 5 left black hole lesions..." along with a large lesion in the mid right frontal lobe measuring 1.3 cm as well as numerous other lesions. My cervical spine has "at least 2 areas of increased T2 signal in the cervical spinal cord at C4 and C7", which are lesions. My thoracic spine is good other than mild disc degenerative changes, which is normal I am assuming. My lumbar spine has "increased T2 signal which is new from previous" at my L5-S1 and I know that T2 signal indicates a possible lesion. I also have mild disc disease, but I am assuming this is because I am getting older. My neuro doesn't seem to think I have worsened though I completely disagree.

I went in to see my ophthalmologist yesterday and he informed me that I have 50% to 60% optic nerve damage on my right eye due to optic neuritis. My left eye shows damage as well, but not anywhere near the damage to my right eye. Dr. Izbrand explained it much like a black hole; once the damage is done to the nerve from optic neuritis, there's no getting the optic nerve back. My optic nerves shouldn't get worse unless I get optic neuritis again. The smearing I see in the right eye (right side of my right eye going diagonally down) is a result of the optic neuritis and won't ever get any better.

So there it is in a nutshell. Why does this information make me so sad? I suppose it is because I kept getting lesions, but saw no outward signs of anything going on. Now I have a hard time getting up into my vehicle, I walk with a drop foot/limp, I cannot control my emotions, I have no filter and whatever I am thinking just pops out of my mouth, I cannot sleep at night (my husband thinks I'm incredibly lazy, but I am just exhausted), I have spasticity and get the worst charlie horses in the weirdest places on my body, and I could go on and on...but I won't. My children, other than Madelyn, have no clue what is going on with my body and the one in the medical field who should know only preaches at me and spouts medical crap way over my head. He has drunk the kool-aid so there is no point in talking to him. I feel terrible that Madelyn knows so much and try to shield everything from her, but she is a smart cookie and picks up on a lot of things that go unsaid.

So I am sad. And probably depressed. And weepy. Do you know that I have never really been any of these things with my MS (or least not that I can remember)?

But tomorrow is a new day so I will pull up my big girl panties and quit being like this.

Worry does not change anything.

And so life goes on.

4 Years After Diagnosis

I hit my 4 year MS diagnosis anniversary earlier this month.  I can't believe it's been just 4 years as it seems like I've had MS forever.  I am so blessed, and grateful, in the fact that I haven't been affected like others with this disease.  I still have all of my mental faculties and can walk relatively well.  I find that I stumble into things, but that's okay because I'm still walking.  I tend to veer to one side, but again that's okay.  I've fallen for no reason, but not often.  I still work full time and even though it takes longer to get the job done, it still gets done.  I've even started doing Richard's books with his business on the side.  I am truly blessed and I really do recognize that fact!

 

The Tecfidera medication is going well.  My neurologist (Dr. Hull) has taken me off of Gabapentin, due to the fact that I've maxed out on the dosage, and switched me to Gralise which is Gabapentin in a time release dosage and the dosage is only 1,800 compared to 3,600 that I was on.  Dr. Hull has prescribed Ampyra to aide with walking.  I'm still on Tussinex for my coughing, but I get that from my regular doctor, which seems to be working.  I've added Biotin to my medicine list as it is suppose to help with hair loss (which is a side effect of Tecfidera), B Complex as I'm low on Vitamin B, and 10,000 IUs Vitamin D2 daily..

 

Recently there was a report of a patient, who was on Tecfidera, who died from PML (Progressive multifocal leukoencephalopathy), which is caused by the JCV (John Cunningham Virus) and I asked Dr. Hull about this during my December 2014 visit.  She advised that patients should always have routine blood work every 6 months to make sure they're not low on their white blood cells (WBC) and that the patient who died from PML should not have been on Tecfidera as their WBC were low for way too long.  She went on to say that if one of her patients' blood tests come back low, she repeats in a month or two and a repeat low WBC test will result in the patient being immediately taken off Tecfidera.  I asked her about being tested for JCV and she said we could definitely do that at no cost as the National MS Society covers the expense.  I just received my results yesterday and apparently I am JCV positive, which means I can never use Tysabri (which is a once a month infusion).  JCV is very common on the human population, infecting 70 to 90 percent of people. JCV can cause PML in people with immunodeficiency...which I have as a result of Tecfidera (or any MS medication for that matter). 

 

During my December 2014 doctor's appointment, I asked Dr. Hull about the need to repeat my MRIs on an annual basis.  She advised that becuse my MS is stable, we can actually stretch that out to every 2 years.  This made me incredibly happy at the time, however now I'm thinking that was a mistake on my part as I won't know if the Tecfidera is working until next January.

 

I guess that's my update for now. 

 

Sources:

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy

http://en.wikipedia.org/wiki/JC_virus

Tecfidera (BG-12)

It's been so long since I last blogged so I'll do a quick recap just in case I've missed something.  I'm now on my fourth neurologist (Dr. Harris) because everyone seems to leave the Abilene area.  The guy I'm going to now is based in San Angelo and comes to Abilene once a month.  I really like him and even though I've had problems with my insurance covering his office visits, I'll probably continue on with him as he swears he isn't moving off somewhere.

I was scheduled to see him in August, however I called him at the end of May and ended up getting in to see him June 6, 2013.  He asked what brought me in early and I told him that I'm done with injections.  Dr. Harris sat there quietly for a prolonged minute, cocked his head to the side, and then asked "okay...then how do you feel about the new pill".  Tecfidera (BG-12) was just approved by the FDA at the end of March and I know doctors are very leery of newly approved drugs and asked him about this.  Dr. Harris advised he was a part of a trial study and has actually had 5 or 6 patients on it for several years.  I was so excited and quickly said YES!

I received my medication on June 26, 2013 and started taking it immediately.  The top side effects are flushing and gastrointestinal issues, but thankfully I've only had minor flushing.  I hear that the third week is brutal, but I'm hoping that I just sail right through it with no problems.  I do have my Pepto, Tums, and Maalox here at work with me just in case. 

Now I just have to remember to take these pretty little pills every morning and evening!



Changes and New Medication

I haven't blogged in a while as I really didn't have anything new to report.  But now I have news to share so I'm blogging.

Dr. Stephenson, my neurologist, left the practise where she was and I was switched to Dr. Baker's care.  Dr. Baker wasn't comfortable with me not using the tried and true MS medications, but said that she really couldn't argue with the Curcumin IF it was working for me and stopping any new lesions from occurring.  Dr. Baker went on to advise she was leaving the practise in August 2012 and that she wanted me to go ahead and get another MRI so the next doctor would have it in hand when he reviewed my file.  She also wasn't happy with me taking the medication for itching as there wasn't any way the MS could cause the itching, it must be an allergy, and wants me to see a skin doctor.

I went in on June 14, 2012 for a MRI and apparently Dr. Baker was not pleased as I have several new spots on my brain and one on my spine.  She said that my MS is more severe than originally thought and that I have to get on the injections immediately.  I asked her about the itching and she advised that yes, with the lesion on my spine, she could understand that being a MS related problem.

I saw Dr. Alexander in September and he advised I had an episode in August (extreme fatigue and a two week long headache).  We set up training for weekly Avonex injections.  I was very leery of the side effects as the number one complaint is flu like symptoms.  I've now taken 4 injections, slowly titrating up from 1/4th to a full dose over a 4 week period of time with only mild side effects the last injection.  I also had to get a flu shot since my immune system is being suppressed by the medication.  My training and first shot was somewhat traumatic in that after I finally injected myself, I immediately got dizzy and the nurse said it was because I was so nervous going into it, it was my endorphins burning off. 

I decided on Avonex, even though the injection goes into the muscle, since it's only once a week vs. Copaxon which is a daily injection.  I am not good with daily medications, much less daily injections.  I know I have to inject myself every Friday night a couple of hours before bedtime.  I use ice packs, which cut down on the uncomfortableness associated with shots, and ibuprofen.  I have training this Friday for the Avonex pen, which I'm told is a shorter needle.  I'm not sure how it'll get into my muscle through my fat, but I'm told it will and not to worry.  I figure 52 shots a year sure beats 365 shots a year!

So that's where I'm at now.  I'm becoming a pro at self-injecting.  And while I can't say that I'm happy about injecting on a weekly basis, I am happy to know that I'm helping myself in the long run.

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!