Wednesday, December 19, 2007

12/19/07

Yesterday was my six-month neurology check-up with Dr. Aziz. It was pretty uneventful, but uneventful is good! He said everything sounds fine and that is always great to hear. I asked him when my next MRI would be, and he said he doesn't go by a schedule but by how I am feeling and whether or not if things are changing -- if I want to get an MRI he would schedule for one to be done, or if he thinks one needed to be done. So that is nice, no unnecessary tests to be performed nor being subject to a generic timeline of what needs to be done and when.

I scheduled my next appointment for 4/10/08. I did ask Dr. Aziz if he wouldn't mind giving a recommendation for a neurologist once we knew where we will be moving. So, once Casey's Match Day (3/20/08) has come and gone and we know where we will be off to next, I will give Dr. Aziz a call so he can look into recommendations. It will be sad to change doctors because I have been happy with Dr. Aziz, but I am sure he will give a good recommendation. If not, I can always find a different neurologist.

Casey & I are now going to start packing for our trip back to the west coast for Christmas. Our flight is scheduled to leave Syracuse at 6:25 a.m. on Friday, 12/21/07 and we arrive in Seattle at about 11 a.m. Friday will be a long day for us! Fortunatly, we don't have to leave until the morning of Friday, 1/4/08. It will be a nice long break away from Syracuse along with the snow & cold. It is always hard to leave WA, but it is always nice to come back to our pets and our space.

We're almost done with this piece of the adventure and will soon be off to the next part of the adventure (and one of us will have transformed into a Doctor!)....

Thursday, October 18, 2007

Not much going on

It has been a while since I posted anything, which is a good thing - right?. There hasn't been anything to post on regarding my medical condition; however, there are some miscellaneous things I can tell you about...

Next Thursday, 10/26/07, Casey and I are going to another MS seminar on "Optic Neuritis & MS". If I remember correctly, my neurologist said I had optic neuritis in my right eye. I say 'another' seminar because on 9/25/07 we went to our first MS seminar which was on "Balance Issues". I do not I have any balance issues, but we thought it would be good to get involved with a local MS group. It was interesting. We couldn't help to notice I was the youngest person attending the seminar with MS. Regardless, it was the first time I was able to see others who had some form of MS (I don't know who had what form), both women and men. Of course, there were more women and men in attendance, which is to be expected since the disease is more common in women.

Anyway, I hope the 10/25 seminar is more interesting than the last one. Dr. Luis Mejico, a neuro-opthalmologists from SUNY Upstate Medical Center (yup, where Casey is going to Med School), is the presenter. Casey said he is gave a lecture a few days ago at Upstate and he found him to be an entertaining speaker as well as a pretty down-to-earth nice guy.

What is optic neuritis?


Optic neuritis is the inflammation of the optic nerve, the nerve located in the back of the eye that transmits light and visual images to the brain and is responsible for vision. According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. Frequently, it's the first symptom of the disease. Although having optic neuritis is very suggestive of MS, it does not mean that a person has or will get MS.

The symptoms of optic neuritis are the acute onset of any of the following:

  • Pain in the eye
  • Blurred vision
  • Graying of vision
  • Blindness in one eye

It's rare that both eyes are affected simultaneously. Loss of vision tends to worsen over the course of a few days before getting better. This usually takes about 4-12 weeks. Treatment may include intravenous and/or oral steroids to control the inflammation.

Source: WebMd.com


FYI: For additional reading on optic neuritis, click the following link to WebMD's website for a short 'blip' on "Multiple Sclerosis and Vision Problems": http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-vision-problems

Thursday, September 6, 2007

UGI results

Well yesterday I finally got the radiology consultation report. The transcriptionist seemed to be in a good mood since a few notations were funny:

Scout radiograph: Unremarkable.
Double-contrast upper GI: The esophagus, stomach and duodenum appeared normal. There is no evidence for mucosal thickening, ulcer or mass. Hiatal hernia and reflux were not seen.

Impression: (1.) Negative double-contras upper GI. (2.) No ulcer is seen in the stomach or duodenum.

Thank you for this referral.


So, I wonder what was going on.. at least there is not a 'mucosal thickening, ulcer or mass, hernia or reflux'.

Tuesday, September 4, 2007

Did I read this correctly?

I don't ususally post on emails I recieve, but I thought this WebMD email deserved a blog posting...


DNA Vaccine May Stop MS
In Early Test, Multiple Sclerosis Vaccine Turns off Harmful Immune Response

By Daniel J. DeNoon
Reviewed by Louise Chang, MD
WebMD Medical News

Aug. 13, 2007 – A new kind of vaccine promises to halt the destructive immune responses behind multiple sclerosis, type 1 diabetes, and other autoimmune diseases.

Thirty patients already have received four injections of the MS version of the vaccine in a phase 1 clinical trial. The vaccine was very safe, at least in the short term. And there was tantalizing evidence that it just might work.

Hideki Garren, MD, PhD, is one of four Stanford University researchers who invented the vaccine and co-founded Bayhill Therapeutics to develop it. Garren notes that MS is an autoimmune disease in which a specific kind of immune cells -- T cells -- attack nerve cells.

"Our vaccine is designed to go only after the disease-causing cells in MS and leave the other T cells alone," Garren, now Bayhill's vice president of research, tells WebMD. "The first advantage of this approach is we should have fewer side effects than current MS drugs. And second, this should modify the underlying disease because we are going after the disease-causing cells."

In MS patients, T cells attack the myelin sheath that protects nerve fibers. One of the T cells targets is a specific myelin protein -- an antigen -- called myelin basic protein or MBP.

The new vaccine is made of genetically engineered DNA that encodes MBP. Normal vaccines provoke immune responses against the antigens in the vaccine. But the Bayhill vaccine attaches the MBP DNA to a "backbone" cleverly designed to turn off immune responses instead of turning them on.

Sure enough, the vaccine did not make any of the patients' MS worse. In fact, MRI scans suggested that the treated patients had fewer MS brain lesions than those who got inactive placebo shots.

"We did see a trend in reduction of lesions," Garren says. "But these are just trends. Certainly this needs to be tested in larger trials."

Garren's team has just completed a phase II trial in which 290 patients received 13 doses of the vaccine over one year. They plan to report the results in October at a large European MS conference.

Emory University immunologist Brian D. Evavold, PhD, says the new vaccine definitely has an effect on the immune system. Evavold, an MS researcher, was not involved in the Garren study.

"To have antigen-specific targeting that turns off anti-myelin T cells is the Holy Grail of MS research," Evavold tells WebMD. "With a DNA vaccine you can do very targeted changes to the immune system. This would be a huge advance over what we can do right now."

"What WebMD readers can take from all this is that the future is very promising for new MS therapies," Garren says. "Many new drugs are in the pipeline and will soon be available. I would ask MS patients to keep an eye out for our vaccine because of the advantages it has."

If the new approach succeeds, it has implications far beyond MS. Evavold notes that many other autoimmune diseases -- such as type 1 diabetes, myasthenia gravis, and rheumatoid arthritis -- are caused by misguided immune cells.

The trick, Evavold says, is finding the specific antigen to which the T cells respond. Such antigens already are known for type 1 diabetes and myasthenia gravis. Indeed, Garren says his team has already begun a phase I trial of a DNA vaccine for type 1 diabetes. Those results won't be in for a year at least.

Garren and colleagues report the findings in the advance online edition of Archives of Neurology.



Source:
  • http://www.webmd.com/multiple-sclerosis/news/20070813/dna-vaccine-may-stop-ms?ecd=wnl_mls_090307

Friday, August 31, 2007

Still nothing back!

Well, my level of patience has dwindled - I am thinking "am I really being impatient…is this ludicrous that I still do not know what my test results are?" Not only that, I feel like my questions are not valid enough to have the actual doctor call and explain things to me.

Lets recap - Blood drawn for lab tests on 7/24 and then the UGI done 8/8. Hmm.. it has been a little over month for the lab tests and 3 weeks for the UGI results and no word back? At least a few weeks ago the doctor's office told me the lab results were mailed out to me, interesting.

I put a call in to my doctor's office yesterday afternoon (8/23), a lady took a message, but I have not received a call back yet. I explained that the doctor thought I could have an ulcer, so if that is what it could be I am really concerned because I do not know what is going on, not to mention the fact that if there is something, shouldn’t something be happening to take care of it. With that I made sure to leave another message inquiring about whether or not I should continue taking the Prilosec OTC - I have 3 refills on the prescription and why keep refilling just to refill it?! What if this isn't addressing the underlying problem, whatever that may be.

Anyway, I just wanted to post an update that I still do not know the results for the blood work or the UGI, but when I do I will post something.

Thursday, August 16, 2007

No test results yet..

I thought the radiology tech assistant knew what she was talking about when she told me I should know the test results *for the UGI done last week (8/8)* within a few days. I have called my doctor's office to see if the results were in and I was told they weren't and that the results wouldn't bein for a few weeks. That seems a little odd to me...

So what is the story with the blood that was drawn on 7/24...hmm.. that has been a little over 2 weeks now.

I am a little impatient with this, but when you're told one thing and then something different every other time, well it just gets quite frustrating. Right?! Errr

Anyway, enough of my venting :) I just wanted to let ya know I still do not know the results for the blood work or the UGI, but when I do I will post something.

Wednesday, August 8, 2007

Good news *yes*

I know this is NOT related to MS or anything medical, but I wanted to just tell everyone I paid my car loan off last week. I thought, "$1,500+, why not?!" No more car payments! :)

UGI update

Well I am back from the UGI series - it only took about 25 minutes.

After reading WebMD, I wasn't surprised with what the UGI was going to entail - the How It Is Done" section of the WebMD website hit it right on.

The first step was that I had to 'throw' some crystal type of things to the back of my throat and follow it by a 'shot' of water to get the crysals to react. The mixture kind of tasted like 7-up, interesting. The radiologists told me the crystals will make me want to burp (yup, they did), but to try and hold them in until after the tests are complete. I told the tech 'I had to let one out but I held the rest in' :)

Then I had to drink the barium mixture of whatever. The first glass I had to drink was chalky and thick. I then lay on the xray table and had to roll from my back in a clockwise motion until I was laying on my back again. This was done so that the mixture could coat my stomach.

Then after they took some x-rays and all, they had me take a few sips from a straw of the barium mixture again, but a way thinner version. I also was instructed to move into poses that showed the liquid moving allowing additional x-rays. While I as laying on my stomach I could see one the x-ray machine called fluoroscopy. (Fluoroscopy allows part of the body to be studied in motion and recorded on a video monitor.) It was pretty cool to see the little sips of the thinner-mixed liquid I had just swallowed go down my esophagus and stuff.

I asked when the results would be in so I knew when to start bugging my doctor, and the tech assistant said they should be read today, and ready tomorrow. Until then, I will continue to take my Prilosec OTC.

Do you ever have those times where you wonder 'what else can go wrong'?!

UGI

Cutting to the chase - I am going to get an upper GI (GI=Gastrointestinal) series done at 11 am today.

For those of you who don't already know, Casey and I were on vacation (it was a very good and well needed vacation) in CA this last month. The day before our flight back to NY, we traveled back to San Fran since that was where we would fly out from. well, the next day which was also the day of flying, I woke up not feeling very well. I know, doesn’t it just figure. I guess it is better than having it occur for the entire vacation, right?! Anyway, I thought it was an upset stomach or something, and it would get better. Well, the discomfort didn’t really go away – I did a test to make sure I wasn’t lactose intolerant by not having any dairy for a week. That didn’t really seem to alleviate the stomach pains, so 14 days after the first onset, I went into the doctor and had some blood drawn and was prescribed Prilosec OTC. The doctor thought I may have an ulcer. Then I got a call late last week saying they made an appointment for me to get an upper GI done. Hopefully this test will show us what the problem is. Oh, and I can't forget this -- I 'get' to drink a wonderful mix of barium and water.. oohh can not wait (sarcasm).

Right now (8:40 am) I am just having hunger pains because I was told I am not allowed to drink or eat anything 12 hours before the test. I am thirsty and what better to quench my thirst than a nice blend of barium and water... mmm yummy :<>think I will survive, haha.

If you're curious to what exactly an upper GI is, feel free to check the URL out. **WebMD is awesome - There are even pictures….. ya, :) see I knew that would draw you in**

Wednesday, July 18, 2007

Post vacation...

Well, been on vacation and back as of 7/7 *sigh*. Sure felt nice to get away from the norm and see some family and friends :)

Remember the note I had my neurologist write (regarding my carrying on of syringes on the airplane) to assist in a smooth airport security check-through? The check-throughs went smoothly.. but I never had any question about my Rx. Ha, what a surprise. But, you know that 'rule' -- had I not had a note or any documentation about the medicine, security would have been all over it.

Everything is going fine, I spoke to a nurse yesterday in a check-up the specialty pharmacy does every time I am to receive a Rx refill, and she said that the 3 month mark is the big 'milestone'. She meant "big" in that most individuals who have had symptoms will notice them decreasing due to the timeframe the medicine has been allowed in the system and its now ready to work as it should. I told her I don't feel any different from what I had felt like prior to beginning Copaxone, and she explained this is probably due to the fact that, in my case, the disease was caught so fast. Regardless, good information to know. I will take more notice in the coming month if I feel any different as my 3 month mark will be August 31.

Thursday, June 21, 2007

6/19

My appointment on Tuesday (6/19) with Dr. Aziz was a follow-up. I didn't realize it had already been six weeks since I had first seen him. He said things are going well and he didn't put any restrictions on what I can/cannot do. I will see him in six months for another checkup.

He wrote a note for me that I will have with me my vacation to CA in a week. Anything to help make the airport security check-through go smoothly.

Oh, and the specialty pharmacy mix-up that happend a few weeks ago has been cleared up. That makes me very happy. I will be getting my second months worth of syrings on 6/26 - the day after my birthday, oh what a nice gift :P Then I will be all set for vactaion.

Well, this was a pretty calm posting this time, which is just fine with me :)


*MILESTONE* As of today, I have been on Copaxone for 3 weeks!

Monday, June 18, 2007

6/18

On my 6/7 posting, I said I would not be seeing Dr. Aziz (my neurologist) until 6/20, but I am actually going tomorrow at 7:45 am. There was a cancellation, which is great because I had been told I didn't have a definite time slot on the 20th, as my appointment time would be determined by call in cancellations.

I believe this is a follow-up visit to see how things are going - I haven't seen Dr. Aziz since my initial visit on 5/12. I have to remember to get a medication travel note (for the trip to CA in 12 days..) so everyone is aware of the fact that I am actually on medication and that I am not a drug dealer :)

Anyway, things are going fine. I will post again after the visit tomorrow....

Thursday, June 14, 2007

How COPAXONE (my medicine), is to help...

I am not sure how much research anyone who is reading my bog has done, if any at all, :) but I thought it would be a good idea to try and explain what COPAXONE's role is for multiple sclerosis.

COPAXONE,is thought to work both outside and inside the central nervous system (CNS) to fight damage to the nervous system. It is indicated for the reduction of the frequency of relapses in relapsing-remitting multiple sclerosis.

COPAXONE is believed to change the way the immune system reacts to your multiple sclerosis by preventing harmful cells from developing and by stimulating beneficial cells in your body. These “good” COPAXONE-activated cells then enter the CNS and help reduce damage at the site of lesions.

It’s important to be realistic and to understand just what multiple sclerosis therapy can (and cannot) do. If left untreated, MS often worsens over time. The goal of MS therapy is to decrease the frequency of relapses and to help reduce new damage to the nervous system. Unfortunately, old damage may not be repaired by MS therapy. And while therapy isn’t a cure, it may help to stay as healthy as possible for as long as possible -- ok, so, shouldn't everyone be living this way anyway? :) It may also allow one to add more predictability to their life by helping control the relapses that can deprive one of their independence.

MS treatment is a long-term commitment to the treatment's success and tolerability.



Sources:

  1. http://www.copaxone.com/

Thursday, June 7, 2007

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.

Sunday, June 3, 2007

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.

Thursday, May 31, 2007

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.

Wednesday, May 23, 2007

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.

Saturday, May 19, 2007

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

Monday, May 14, 2007

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.

Links for MS information

I thought you might want to read up and get some information to hopefully understand this disease more as some people have preconcieved notions and don't know what to expect. Any clarification is helpful for everyone, right? :) Here is some information on multiple sclerosis.. did you know sclerosis means scars?


This is information on COPAXONE, the Rx I will be on: http://www.copaxone.com/default.aspx


Additional resources:
  1. http://www.nationalmssociety.org

  2. http://www.webmd.com/multiple-sclerosis/guide/recognizing-multiple-sclerosis

  3. http://www.mult-sclerosis.org/ (Click "Explaining MS")

  4. http://www.rcep7.org/projects/handbook/msclerosis%20draft.pdf

  5. (New link as of 5/22): http://health.msn.com/encyclopedia/healthtopics/articlepage.aspx?cp-documentid=100066440

5/12

5/12: I had my neuroglogy appointment at 8:45 am. It is pretty much confirmed that I have relapsing-remitting MS (also called RRMS)-the most common form of MS that affects approximately 85% of newly diagnosed patients. RRMS is characterized by relapses that are usually followed by partial or complete recovery. I had about 5 vials of blood drawn this morning to do a few more test to rule out anything else (like Lupis).. but the neurologist is pretty much stating I have MS.

April 2007 - what is going on with the tingling sensation?

Hey, I just wanted to let you know I have turned into a human guinea pig, as far as going to the doctor to find out what is going on with my body.

About the early of last month, April, my right foot and leg started to have this tingling sensation. Then my left foot and leg started to do it. It was more annoying than anything, and not to mention abnormal. I don't know exactly how to describe the feeling, maybe when you are outside on a FREEZING day and go into a warm room and your legs are warming up and there is the tingling/numb sensation? I guess that is as close as I can get with describing it. Anyway, this feeling stayed around 24/7 for a week so I found a dr (Laura Martin) and made an appointment for 4/17 to explain the issue.

So, 4/17: I meet Dr. Martin and explained what has been going on. She, of course, askes a lot of questions and explains that she would like to run some tests.. so, I had my blood drawn. Believe it or not, I haven't ever had this done. Needles and Danielle are like oil and water-they just do not mix. I have to say, I did fine, especially since I went alone to the appointment knowing I would probably have to have blood drawn. The lab results on the blood were normal. Oh, I almost forgot.. that same day I also had back & spine x-rays. Those results also came back normal.

Moving along to 4/20: I went back for CT scans on my brain and spine. That machine was pretty neat. I asked the tech if he had ever seen Stargate with the time traveler thing.. he hadn't but that was what it reminded me of, except for the fact that I was laying down instead of walking through the ring like they did on Stargate. Anyway.. Dr. Martin called me to say there was a 'shadow' on my brain CT, and that they would like to do an MRI. I guess that means more testing?!

4/30: Had the brain and C-Spine MRI. That machine wasn't as cool as the CT scanner.. and much noiser.

Test results

So, my blood work says I am healthy (no thyroid problems, diabetes/blood sugar, animea, infection, kidney or liver problems), the x-rays/CTs show I don't have any herniated disks or anything out of alignment, EMG showed my lower extremities don't have any issues... so, other than the brain issue, I guess you could say I am healthy :)

MS isn't all that easy to diagnose, hence all of the thorough testing to rule stuff out.. and then I have only had one on-set (or a symptom) and usually you need two.

Everyone is glad that I just didn't say 'oh it will go away' and not go to the doctor when I started to get those tingling feelings in my legs and feet. I always say if you notice something just isn't right about your health and it lingers, go to the doctor. That is what they are there for. Why wait for something to get worse, right?!

May 5 & 8

~~~ Where do I begin?! ~~~ 5/5: I went back in to meet with my Primary Care Provider (PCP), Dr. Laura Martin so she could discuss all the test results (blood, x-rays, CTs). When she got to the MRI results she explained that 'this' is not confirmed, but the findings on the MRI are most likely related to demyelenation and multiple sclerosis. *gulp* She proceeded to explain that she would like to refer me to a neurologist for further testing.

During the visit, I told her that my legs were not tingling nearly as much that morning or the previous day. She still wrote me a 10 day Rx for oral steroids (Prednisone). Let me just say, these pills taste disgusting, but they did what she hoped they would... I no longer have tingling in my legs or feet. I wonder what would have happened if I would have waited one more day, would the tingling have gone away on its own? Then again, I just followed dr's orders.

5/8: I had my appointment with the Pain Management doctor, Dr. Shaeffer, who adminisered the EMG/nerve conduction study to rule out any problems I may have with my lower extremities/nerves. This involved two tests: 1) little electrical shock stimulation's to see how far the impulse goes and where it stops, and 2) acupuncture needles in leg muscles. You know how much I LOVE needles :) Neither of the two tests were as bad as I thought they were going to be, so that was good. I did notice the left leg was more sensitive to the acupuncture needles than the right, but all in all it went alright.

The results for the EMG was fine, just another thing to rule out a possibility or what ever.. if you can follow that :) Maybe this whole issue is some sick thought to try and get me over this needle phobia I have.. yeah, I don't think that is it either :)