I have made it so far

Well, it is hard for me to believe, but it has been a week today that I have been on my medication. It is going rather well, which is great.

I have found out what injection site areas I prefer, but I cannot use just one. There are 7 possible injection areas on the body to pick from each day: lower stomach area (abdomen - 2" from the naval), thighs, hips and arms. It is important not to inject in the same area more than once a week to help reduce any risks of injection site reactions, which can include swelling, pain itching and lumps.

I found two things out yesterday about my prescription:

1. Specialty pharmacy mix up - PharmaCare, the specialty pharmacy where I got my first supply of COPAXONE from is not the correct company that I should have been set up with. Isn't that just wonderful information. Someone messed up somewhere. It is too bad that I will no longer be using PharmaCare-they were always real nice and helpful when I called in. Hopefully the new company, CuraScript (Express Scripts' specialty pharmacy), will be just as easy to work with. All in all, I am now starting over with getting the prescription issue back in working order.
2. Copay - I had thought I would be able to get COPAXONEfor a 90-day supply. This would be very nice and much cheaper because it would only cost me $25 copay every 3 months. Yep, that was too good to be true for this prescription as I can only receive a 30-day supply per month per $25 copay. Something to plan in the budget :)

Well, that is all for now. I am not due back to see Dr. Aziz (my neurologist) until 6/20. It is such a nice relief to have a break from all of the frequent doctor visits.

5/23 Lab and MRI results

In my previous posting, I stated I would post what the MRI results were once I acquired translation into layman's terms :)
**Thank you to Casey for his assistance with the translation.**

• Lab Work:
  More blood work was completed to test for the following: lupus, syphilis, lyme disease, vasculitis’ (autoimmune inflammation of the blood vessels), vitamin B-12, folate and thyroid problems. The results came back normal.
  
  
• MRI Cervical Spine (C-Spine) and Thoracic Spine (T-Spine) w/and without gadolinium: *Cervical=neck; Thoracic=upper back; Gadolinium= contrast agent that helps different between active and old lesions--more at the end of 5/14's post explaining gadolinum, if necessary*
  
  Results found diffuse (spread out) lesions consistent with multiple sclerosis. The contrast agent did not enhance many lesions suggesting the multiple sclerosis is not new. These images cannot tell how long these lesions have been there.
  
  
• MRI Brain w/and without gadolinium (the contrast agent):
  The brain consists of gray and white matter. Gray matter is neurons that normally do not have myelin and the while matter is white due to being covered by myelin, which is the insulator that is attacked in MS.
  
  Results found white matter lesions in the periventricular areas. Periventricular areas are the areas of white matter surrounding cerebral spinal fluid filled areas in the brain. The cerebral spinal fluid contains the inflammatory substances that are believed to cause MS. This pattern of lesions is consistent with MS.
  
  The contrast-enhanced images did show a few active/new lesions in the corona radiata, which is a connection between sensory and motor neurons in the cerebrum (top of brain) and the body's nerves.
  
  The remaining findings from this MRI are similar to the findings from the C-Spine MRI mentioned above in that the results found diffuse (spread out) lesions consistent with multiple sclerosis.

5/31 Started COPAXONE today!!

Yup, it is glass syringes pre-filled with COPAXONE every day from now until.... well, who knows.

I had my appointment this morning on how to administer COPAXONE (medication that helps to manage an individual's relapsing-remitting MS by reducing the frequency of relapses).

I know this will be a surprise to read, but I was more anxious about just administering the stuff correctly...not that there was a needle involved - seriously. I imagine, considering what this last month's (4/07-5/07) doctor visits and testing consisted of, I was getting use to needles as long as I didn't look at the needles. I never thought I would say/admit that!

Anyway, the needle is injected subcutaneously (just below the skin), so it doesn't go in very far. It helps that the syringe is 'hidden' in the injector gun and that the needle is very thin. I really did not feel the needle go in, so after I did it I said, "oh, I can do this." What a relief! I noticed an odd feeling after the medication was injected, but not too different than when you get a vaccination or what not (i.e. the area of injection feels warm to the touch, redness and sore). That odd feeling is a common short-term reaction patients report right after injecting COPAXONE. Symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

I have the results from the MRIs that were done on 5/23 but I need to look at them and get some assistance at translating the results :) I will post them once they make sense to me. The nurse who taught me how to inject the Copaxone noticed the the EEG results were in my folder, but after looking through the copies I got, those results were not included.

5/23

I had the 3 MRI's (brain, cervical spine and thoracic) with and without gadolinium (the contrast agent) this morning. The MRI's went well, but it really seemed to take a longer than 2 hrs, and it isn't like they were my first MRIs. The only 'complication' was when it came to injecting the contrast agent. The tech was able to get blood from my left arm's vein but for some reason my vien and needle with contrast agent were not cooperating. The tech decided she wasn't going to fight with the veins (thank god!) and just switched to my other arm. My right arm's veins worked without any problems. I think those veins are better, visibly anyway :) . **Back to my left arm and the 'complication': before the tech switched arms, she said I would probably have a little bruise on the left arm, and the burning sensation I was feeling would go away. It did burn, but she got a warm cloth and put on my arm. That helped.. and the burning sensation went away after a few minutes, which I was very happy about.** The tech said Dr.Aziz (my neurologist) should get the results in a few days.

I have not heard anything about the EEG that was done last Tuesday, 5/15. Once I get the results of the EEG and MRI, I will make sure to post something so you will all know :)

Well, I hope this blog is working out for everyone. It is a much easier way for me to keep everyone up-to-date with what is going on. Like always, please let me know if you have any questions.

Types of multiple sclerosis

People with MS can expect one of four clinical courses of disease, each of which might be mild, moderate, or severe.

• Relapsing-Remitting (RRMS): where symptoms fade and then return off and on for many years.
  Characteristics: People with this type of MS experience clearly defined but unpredictable flare-ups (also called relapses, attacks, or exacerbations) during which time new symptoms can appear and/or old ones resurface or worsen. The relapses are followed by periods of remission (recovery), during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for varying periods (days, weeks or months) and there may be partial or total remission. The disease may be inactive for months or years. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.
  Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%.

• Secondary-Progressive (SPMS): which at first follows a relapsing-remitting course and then becomes progressive. “Progressive” means it steadily gets worse.
  Characteristics: People with this type of MS experience an initial period of relapsing-remitting MS, followed by a steadily worsening disease course with or without occasional flare-ups, minor recoveries (remissions), or plateaus.
  Frequency: 50% of people with relapsing-remitting MS developed this form of the disease within 10 years of their initial diagnosis, before introduction of the "disease-modifying" drugs. Long-term data are not yet available to demonstrate if this is significantly delayed by treatment.

• Primary-Progressive (PPMS): where the disease is progressive from the start.
  Characteristics: People with this type of MS experience a slow but nearly continuous worsening of their disease from the onset, with no distinct relapses or remissions. However, there are variations in rates of progression over time, occasional plateaus, and temporary minor improvements. Primary Progressive differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems. Primary Progressive MS does not have separate episodes (relapses, exacerbations). Unlike RRMS where women are twice as likely to be diagnosed than men, PPMS is equally divided between the genders.
  Frequency: Relatively rare. Approximately 10%.

• Progressive-Relapsing (PRMS): where the symptoms come and go but nerve damage steadily gets worse.
  Characteristics: People with this type of MS experience a steadily worsening disease from the onset but also have clear acute relapses (attacks or exacerbations), with or without recovery. In contrast to relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression.
  Frequency: Relatively rare. Approximately 5%.
  

Sources:

1. http://www.mult-sclerosis.org/whatisms.html
2. http://www.nationalmssociety.org/site/PageServer?pagename=HOM_ABOUT_what_is_ms
3. http://www.msif.org/en/ms_the_disease/types_of_ms.html
4. http://health.msn.com/encyclopedia/healthtopics/articlepage.aspx?cp-documentid=100066440

5/14

I have my EEG appointment tomorrow at 9 a.m. These tests total approximatly 2 hours in length.

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain by using sensors attached to your head and connected by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions can be detected by observing changes in the normal pattern of the brain's electrical activity.

Evoked Potential (EP) tests
Evoked Potential tests are procedures for measuring the speed of impulses along neurons. These tests help point our lesions that are not causing symptoms by providing evidence of slowed nerve impulses.

Responses can be measured using EEG readings from electrodes attached to the scalp and occasionally other areas of the skin. They are in fact completely painless and entirely harmless. Based on input signals to the particular sense being measured, the time taken for that response to register can be accurately measured and compared to normal readings. The results are then analyzed on a computer and average speeds recorded.

Demyelinated neurons transmit nerve signals slower than non-demyelinated ones and this can be detected with EP tests. Although they may appear to function perfectly, even remyelinated neurons are slower than normal nerves and so historical lesions can be detected in this way.

There are three main types of evoked potential test: (and I believe will all be performed tomorrow)

Brain-stem Auditory Evoked Response (BAER)
The BAER test measures the speed of impulses along the auditory portion of Cranial Nerve VIII. This nerve arises in the Pons area of the brain-stem and therefore this test may be indicative of lesions in that area. The patient lies down in a darkened room to prevent visual signals from interfering with measurements. A series of clicks and beeps are played back to the patient. 67% of people with definite MS and 41% of people with probable MS will have abnormal BAER test results.

Somatosensory Evoked Potential (SSEP)
The SSEP test pertain to sensations in skin and deep tissue. These measure the conscution of impulses by applying electrical stimulus to the arms or legs. The current is switched on for 5 seconds and electrodes on the back and skull measure the response at particular junctions. The current is very low indeed and completely painless. The electrodes record neural signals when they reach the scalp. The speed of various nerves can be measured in this way and the points of slow-down (i.e. demyelinated lesions) approximated to because of the sampling at several places. 77% of people with definite MS and 67% of people with probable MS will have abnormal SSEP test results.

Visually Evoked Potential (VEP)
This noninvasive test measures the speed and amplitude of the of the optic nerve impulses. The patient has to focus on the center of a "TV" screen on which there is a reversing black and white checkerboard pattern shown at measured intervals. The patient wears a patch on one eye for a while and then on the other, so that the speed of both optic nerves can be measured. The electrodes placed on the back of the head to record cortical (outer layer) signals record when the nerve impulse is received. 85-90% of people with definite MS and 58% of people with probable MS will have abnormal VEP test results.

********
5/23: I have an appointment at 9 a.m. for 3 MRI's (brain, c-spine and thoracic), but these will be MRI's with contrast. To gain better contrasts in the images, contrast agents such as Gadolinium are often injected intravenously (FYI: Gadolinium is a non toxic substance which does not contain iodine and has practically no side effects.) The gadolinium works by altering the local magnetic field in MS lesions and thus enhancing the MRI image. This helps to differentiate between new/active and dormant lesions. So, this would then illustrate whether this is my first attack or not.