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!!!!!

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).

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".