New symptoms creeping in on me... I'm hating Larry the Lesion and all his friends right now. So in the last week alone I have the numbness still in about 60% of my body. My arm seems to not be numb anymore so thats nice. I started having this shooting pain in my left cheek. I forget what thats called... Tri... something... but it seems to almost be gone. It was rather irritating to feel a constant pain sensation in my face with every movement of my face. Thats new. Then I lost all sensation to my tongue. Kinda like when your at the dentist and have had freezing. And when it's "thawing out" and you eat or drink too early you have that sensation (or lack of sensation) in your tongue. Annoying. That went away after a day and then I lost all my taste buds for 3 days or so. My lumbar pain that I typically have is super bad right now too so I've gone back to taking meds at night to help stay caught up on sleep. I was at the MS clinic most of the day yesterday for my 3 month check in for the Fingolimod trial. So far things are going well for me in regards to the trial... I don't appear to have side effects from whichever drug I'm on, but with having an official relapse they are wanting me to report in if things change. With how rapidly symptoms are coming and going its a bit tough to call any of them specifically an attack, so I'm just to watch things right now. They called them kinda suedo attacks. And thank god, I can stay in the trial! I'm happy about staying on meds. I want the benefit regardless of having an attack. I know the drugs won't stop all disease activity so it's expected. I talked to my neurologist about how my stress level is affecting my MS. I feel like it's feeding Larry and the stress in my life is going to continue for some time it seems. I can't escape it, I just have to keep trying to survive it but she said that I am absolutely going to have MS symptoms because of it. A stressed brain is just going to distract your immune system in a negative way, so of course you'll see more attacks. So thats me this week... how you all feeling these days?
Omega 3 Fatty Acids does help MS
More updated news confirming that taking Omega Fatty acids is of benefit. "Health care practitioners often recommend eating fish at least twice per week because fish contain high levels of omega-3 fatty acids. Omega-3 fatty acids contain eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA), which are known to affect key blood proteins (matrix metalloproteinase-9; MMP-9) and are produced by the immune cells of individuals with MS. A new study evaluating the effects of omega-3 on MMP-9 in patients with MS suggests that the intake of fish oil, containing omega-3 fatty acids, may have potential benefit in MS by decreasing MMP-9 levels. The purpose of the study was to evaluate the effect of omega-3 fatty acids on ten patients with MS. Ten MS participants received 9.6 grams of fish oil/day in an open-label study. An in vitro study using immune cells from healthy subjects was also conducted simultaneously to evaluate concentration effects of EPA and DHA on MMP-9 levels and activity. The researchers found there was a 58 percent decrease in MMP-9 levels secreted from immune cells of MS volunteers after three months of fish oil supplementation compared to baseline levels. At three months, both EPA and DHA levels were significantly increased in red blood cell membranes. The in vitro study showed a significant decrease in MMP-9 levels and activity for EPA and DHA. Omega-3 fatty acids decrease both MMP-9 levels and activity and may act as immune-modulators that could benefit MS patients."
What does stress do to someone with MS?
This report says that stress does impact us in a bad way... not surprising right? "Stress appeared to elevate levels of protein cytokine called interleukin-6 (IL-6), which led to increased severity of multiple sclerosis-like illnesses in the mice. Cytokines are pro-inflammatory proteins that regulate immunity and inflammatory functions. The researchers also found that giving the mice IL-6 neutralising antibody treatments during stressful events prevented the stress-related worsening of the MS-like diseases. "People exposed to chronic social conflict experience high levels of stress and consequent dysregulation of the immune system, thereby increasing vulnerability to infectious and autoimmune diseases," lead researcher Mary Meagher said. "
DNA vaccine BHT-3009
Interesting... I had seen postings about this drug in the past couple of years, but nothing about calling it a vaccine. Regardless, it's moving ahead in trial world and thats a good thing :) "Magnetic resonance imaging (MRI) and other safety evaluations were performed at the beginning of the study, and again after five, nine, 13, 26, 38 and 50 weeks. "BHT-3009 was safe and well tolerated, provided favorable trends on brain MRI and produced beneficial antigen-specific immune changes," the authors write. These changes included a reduction in the number of cytokine-producing CD4+ T cells (a type of white blood cell) specifically targeting myelin proteins. This reduction was found in the blood as well as in the cerebrospinal fluid of three patients who voluntarily underwent lumbar puncture after completing the course of BHT-3009. Atorvastatin did not appear to provide additional benefit. "There were no increases in clinical relapses, disability, drug-associated laboratory abnormalities, adverse events or the number and volume of contrast-enhancing [visible on MRI] lesions on brain MRI with BHT-3009 treatment compared with placebo," the authors write. "In fact, there was a trend toward a decrease in the number and volume of contrast-enhancing lesions in the brain in patients treated with BHT-3009 compared with placebo." Based on these results, a phase 2b trial--a randomized clinical trial in approximately 290 patients--of BHT-3009 is already under way. "If successful in MS, antigen-specific DNA vaccines can be developed for prevention or treatment of related diseases, such as type 1 diabetes mellitus, systemic lupus erythematosus, rheumatoid arthritis and myasthenia gravis," the authors conclude. "
Yesterday marks 3 years since my double vision kicked in and got me my MS diagnosis. Wow. How time has flown. Weird to look back and think about those days when I was going from one doctor to the next one to the next one and none of them being able to tell me what was going on. The relief I felt when Dr. Oger simply told me what I was dealing with and how I would from here forward. He was pretty right too. How ironic that he was doc for the blinded Neuro exam I had to have on Monday in regards to my attack now. I certainly didn't ever think I would agree to be in a clinical trial at that time. In fact, I was pretty against it. Funny how time changes things.
Well, it turns out that I am in fact having an attack. Booooo. I went in to the MS clinic and had a physical and neuro exam, urine test and all the other cursory ones... blood pressure, temperature ect. So my numbness has moved to incorporate my torso, legs and one arm and it does get classified as an attack. I had to re-sign the clinical trial paperwork and talk to my doctor about whether I should stay on the trial or not. We also talked about steriods and decided not to do any. Thank god! the one doctor also said that he feels very strongly about Fingolimod. He thinks it will go to market one day. Kinda cool to hear that. The thing they did find was a bit of a fever and high white blood cell count in my urine... bladder infection? Who knows. So they sent off to get a culture done and I'm waiting for the results of that. The weird thing about all of this is that I have no symptoms that would tell me that I have anything wrong with me other than the numbness. Weird. Were it not for this trial, I would never have gone in to be looked at let alone know that I had other stuff going on! What a weird process this is for me. Maybe I'm just really good at ignoring what my body does from time to time.
I phoned the MS clinic clinical trial folks a moment ago to let them know about my numbness. I thought it was more than my usual and should report it as it's down to my wrist now. Turns out I should have called a couple days ago! But I hadn't been given any relapse info (as to what I have to do when I relapse) so I have to go to the clinic tomorrow for a neuro exam and full physical. Whoops! I'll know better for next time if there is a next time. I guess numbness in my body is just not something I relate to as a relapse. I have numbness here and there all the time, just not so all consuming as right now. I haven't felt this much of my body numb since 2001 and that was my first undiagnosed attack. The thing is, I won't be doing anything about it. I don't really hurt and I'm still walking (I have a small hike planned for tomorrow morning!) and my legs aren't giving out or anything. I'm a bit more wobbly than usual with balance but that still hasn't altered how I'm living my life day to day. I suppose a part of my clinical trial commitment is to be examined under all varied health conditions. So, off I go to be the guinea pig I asked to be! Ha!
And now my left upper arm is included in the numbness. Boooooo. My lower leg is also so numb that when I touch my skin or scratch test myself, its kind of a more burning sensation. Could the warm weather be the culprit here? I've never noticed my numbness being tied to it but it's the only other environmental change and lord knows I want to blame this on something! Hahah :) Happy BC day! Hope your all enjoying the long weekend.
I noticed today that my numbness in my legs has changed. It was less in my legs over the last month but all of a sudden today my left leg is numb all the way to the top and not just my typical shin numbness. And it includes my mid riff. Only on the left though. I'm hoping this is as bad as it'll get as I'm not really in the mood for an attack. August 15th will mark 3 years since my officially diagnosed attack of double vision so it'd be nice to actually have 3 years clean of any "big" attacks. Time will tell...