surprising ms symptoms like itching and tingling

http://www.everydayhealth.com/health-report/multiple-sclerosis-pictures/the-most-surprising-symptoms-of-multiple-sclerosis.aspx?xid=aol_eh-gen_4_20140421_&aolcat=hlt&icid=maing-grid7%7chtmlws-main-bb%7cdl26%7csec1_lnk3%26plid%3d467530

medical marijuana and ms

Medical Marijuana: What the Research Shows Print Email Reset Font Size By Bara Vaida WebMD Feature Reviewed by Michael W. Smith, MD Dustin Sulak, DO, is a doctor on the front lines of medical marijuana. Sulak has recommended various forms of marijuana to his patients and has seen striking results. Patients with chronic pain needed fewer prescription pain meds. Patients with multiple sclerosis had less painful muscle spasms. Patients with severe inflammatory bowel disease began to eat again. “These responses are the most impressive to me,” says Sulak, who practices at Maine Integrative Healthcare in Manchester. Maine is one of 20 states, along with the District of Columbia, where medical marijuana is legal. “With irritable bowel syndrome, we’ll see patients who were at death’s door turn around dramatically.” Sulak’s experience is powerful and adds to the large body of personal stories -- dating from 5,000 years ago -- about the therapeutic value of marijuana. But the scientific evidence behind the drug’s benefits remains elusive, even as 10 more states consider legalizing medical uses in 2014. The problem: In 1970, the federal government classified marijuana as an illegal, highly addictive drug with no medical value, making research harder to do. FULL STORY HERE http://www.msviews.org/msviewsandnews4/index.php/2012-05-28-00-15-54/2012-05-28-00-17-44/24-research/701-medical-marijuana-what-the-research-shows

Most of the myths swirling around multiple sclerosis aren’t true. Here, we separate fact from fiction.

The science of multiple sclerosis is changing so rapidly that perhaps people with multiple sclerosis, their families, and even their doctors can be forgiven for holding on to some outdated multiple sclerosis myths and misconceptions. With more knowledge of the condition, people with multiple sclerosis can live more healthy, high quality lives. Here are some of the most common, outdated multiple sclerosis myths. Read More Here at: http://www.everydayhealth.com/news/multiple-sclerosis-myths/?xid=aol_eh-ms_3_20140317_&aolcat=AJA&icid=maing-grid7%7Chtmlws-main-bb%7Cdl32%7Csec1_lnk3%26pLid%3D455323

Study Provides Strong Evidence for Benefits of Cognitive Rehabilitation to Improve Learning and Memory in People with MS

Researchers at the Kessler Foundation in New Jersey report results of a clinical trial showing that a specific type of memory training improves learning in people with MS for at least 6 months after the training has ended, and also benefits other aspects of quality of life. This controlled trial, funded by the National Institutes of Health, provides important results that should help promote the benefits of cognitive rehabilitation and improve its coverage by insurers. Nancy Chiaravalloti, PhD, John DeLuca, PhD, and colleagues recently reported their results early online in the journal Neurology. read article here http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=8465

Beating MS With a Natural Diet - By Ashley Welch, Everyday Health Staff Writer

After being diagnosed with relapsing-remitting multiple sclerosis in 2000, Terry Wahls, MD, expected to lose mobility within 10 years. A former runner and taekwondo competitor, Dr. Wahls was strong, but the disease soon began to take its toll. By 2003, Wahls, a clinical professor of medicine at the University of Iowa Carver College of Medicine in Iowa City, had transitioned to secondary-progressive multiple sclerosis and underwent chemotherapy in an attempt to slow the disease. Extreme fatigue and back pain set in, and Wahls began using a tilt-recline wheelchair. It became clear she could eventually become bedridden. Wahls and her family first hit the national spotlight in January 2011, when her son, Zach, an engineering student at the University of Iowa, testified before the Iowa State House of Representatives opposing a state constitutional amendment to ban gay marriage. A video of his moving speech, in which Zach spoke of being raised by a lesbian couple — Wahls and her spouse, Jackie Reger — and about the difficulty of having a mother living with multiple sclerosis, went viral, receiving 1.5 million views within two weeks. Vitamins and Supplements for MS Just was Zach advocated for gay marriage, Wahls works to make a difference for people like herself who are living with MS. Facing the possibility of serious disability, the fifth-generation Iowan decided to do everything in her power to slow the progress of her MS. She began searching the Internet for the latest multiple sclerosis research, and relearned biochemistry, cellular physiology, and neuroimmunology, so she could understand the studies. Unfortunately, she found, many involved tests on drugs or other treatments that were years away from FDA approval. Then it occurred to Wahls that maybe her diet could play a role in improving her MS symptoms. She searched for vitamins and supplements that had been found to help any kind of progressive brain disorder, including Parkinson's, Alzheimer's, and Lou Gehrig's disease, and made a list of those she thought she should include in her diet. After six months of taking omega 3s, B vitamins, and amino acid supplements, Wahls decided to give up on her new supplement routine. But the very next day, she says, she noticed a sharp decline in her well-being. "I felt exhausted and just couldn't get out of bed," she recalls. "It convinced me that maybe the vitamins and supplements weren't making me better, but they certainly seemed to be slowing down the speed of my decline." Will the Paleo Diet Work Against MS? In the summer of 2007, Wahls discovered the Institute for Functional Medicine (IFM) in Washington, an organization devoted to helping doctors and health providers use the latest scientific research to take better care of patients with complex disease. With the institution's help, she came up with a longer list of vitamins and supplements that are good for the brain. Then she had an epiphany: What if she redesigned her diet so that she was getting those important nutrients from food rather than from supplements? It was then she decided to create the Wahls Diet, a nutritional plan based on the Paleo, or hunter-gatherer, diet, and everything she learned from the IFM and her own research. Wahls changed her diet because she believed that "food is the most important thing we can do to restore our health, or to destroy it, more so than any other choices we make." The results of her nutrition plan astounded Wahls, her physician, and her family. Within a year, she was able to walk through the hospital without a cane and even complete an 18-mile bicycle tour. The Wahls Diet, along with a program of progressive exercise, electrical stimulation, and daily meditation is currently in clinical trials at the University of Iowa to see if it can have the same impact on others as it did on Wahls. The Role of MS Remission As a physician, Wahls knows that until the clinical trial is completed, it's unclear whether her diet plan actually helped her MS symptoms. Ellen Mowry, MD, Assistant Professor of Neurology at the John Hopkins Medicine Institute and an MS expert, notes that multiple sclerosis differs greatly from person to person, and that remission — rather than diet and exercise — could be responsible for any alleviation of Wahls' symptoms. "The time between one relapse and the next is really variable between one person and the next," says Dr. Mowry. "Sometimes a patient may have one relapse and even without treatment, never have one again. Others may go 10 years before the next relapse, and still others may have relapses every couple of months." Mowry also says that more scientific research needs to be done on the role diet might play in treating MS, but switching to a more nutritious diet will usually help patients’ well-being. "Most Americans don’t eat a healthy diet," she says, "so when they switch to a healthier one, they tend to feel better. But it’s hard to know if the diet is actually helping the MS per se, or if it’s helping because it’s adding to the patient’s overall well-being." For Wahls, an important part of her recovery has been her family — wife Jackie, son Zach, and daughter Zebby. "Living with MS is far easier when you have a loving, committed family by your side," says Wahls. Jackie helped Wahls figure out how to structure her diet, while her children helped with housework as she became more disabled. Speaking of Zach's testimony before the Iowa legislature, says Wahls, "Jackie and I both watched the speech with tears in our eyes. It’s clear that he touched on something that has really resonated with many, many Americans. We are very proud of what he’s doing and the choices he’s making." Zach is the author of the book My Two Moms, which was published in April 2012. Wahls has written a book as well, called Minding My Mitochondria. She gives lectures and webinars locally and across the country to spread the word about her success with her diet. http://www.everydayhealth.com/multiple-sclerosis/beating-ms-with-natural-diet.aspx?xid=aol_eh-ms_5_20131202_&aolcat=AJA&icid=maing-grid7%7Chtmlws-main-bb%7Cdl11%7Csec1_lnk3%26pLid%3D414863

Trevor Bayne diagnosed with multiple sclerosis; cleared to drive

CONCORD, N.C. — Roush Fenway Racing driver Trevor Bayne, who won the 2011 Daytona 500 and then missed part of that season because of fatigue and double vision, has been diagnosed with multiple sclerosis. Bayne, who drives full time in the Nationwide Series for Roush Fenway Racing and part time in Cup for Wood Brothers Racing, has been cleared by doctors to continue racing, and the 22-year-old is still slated to run for the Nationwide title next year in a Roush car sponsored by AdvoCare. “I’ve never been more driven to compete,” said Bayne, who is sixth in the 2013 Nationwide standings heading into the season finale this weekend. “My goals are the same as they’ve been since I started racing. I want to compete at the highest level and I want to win races and championships. I am in the best shape I’ve ever been in and I feel good. “There are currently no symptoms and I’m committed to continuing to take the best care of my body as possible." In 2011, Bayne missed five weeks of racing after experiencing fatigue, numbness and double vision. It was initially thought to be complications from an insect bite or Lyme disease. At the time, tests appeared to be inconclusive. Bayne’s younger sister also has multiple sclerosis, a disease of the central nervous system that can lead to the loss of mobility, numbness and blindness. Bayne, who said he has had no symptoms since June 2011, has undergone extensive testing at the Mayo Clinic in Minnesota because he wanted to have a diagnosis, which he finally received in June shortly after winning the Nationwide Series race at Iowa. “There could have been local Lyme’s on my elbow and that’s why at the time we were like, ‘That’s what it is,' and it was an easy thing because I did have the rash on my arm from a bug bite," Bayne said. "I don’t know if the two are connected. I’m not a doctor and I wouldn’t want to make that call, but they wanted to do more research because I wasn’t satisfied with not knowing, so as a competitive person and as a racer you guys know how we work. "We want to know how everything works and causes and effects, so I just kept going back for checkups and this is what it has led to.” na (AP Photo) Once he got the diagnosis, Bayne said he took a while to comprehend the situation and decided this was the time to go public with it so he can talk freely about it when he speaks to groups. "I think anybody that gets a diagnosis is going to sit back and think about it," Bayne said. "What does this mean? What does it mean to my family? What does it mean to me and my partners? Our team. "The more and more I thought about it and the more and more I realized that I was fine, the more and more it sunk in that everything is going to be OK.” Bayne is not taking any medication and hopes that a healthy diet and lifestyle will keep symptoms from returning. He said he did not believe the disease nor the medical testing has impacted his performance this year. “My hope is not to ever have symptoms again," Bayne said. "Obviously, there are people who have gone with completely normal lives with MS and I hope to be one of those people. Nobody knows exactly what the future holds for anybody, but, for me, I trust that whatever God has planned for me is what’s best for my life. "I’d love to be healed. That would be perfect if that’s what He plans for, but, if not, then we’ll move on day by day." Roush Fenway Racing President Steve Newmark said that Bayne's health has not been an issue when courting sponsors, and AdvoCare has no issues with having Bayne — the youngest driver ever to win the Daytona 500 as he won it the day after his 20th birthday — being its driver. “We are 100 percent supportive of Trevor and his ability to compete in a race car,” said Roush Fenway co-owner Jack Roush. “I have full confidence in Trevor and his partners have all expressed that same confidence and support. “As with all of our drivers, we look forward to standing behind Trevor and providing him with all of the tools he needs as he continues to develop in his young career.” copied from

Author JK Rowling Contributes to the MS Cause

The question of how much – if anything – any of us living with multiple sclerosis is obligated to do for the cause is one of personal willingness.  When famous people get MS, many of us change our tune and simply expect that they will give of their time, money and talent for the cause.  I’ve always said that such a gift would be great but it’s none of my business.

Now we take someone who is one – albeit a small ‘one’ – degree of separation from the disease, I’d say that any expectation of requirement or obligation is just chucked out the window.

That’s why I think that the new Anne Rowling Regenerative Neurology Clinic at the University of Edinburgh, conceived and funded by Harry Potter author, JK Rowling – daughter of Anne, whodied from complications of MS at age 45 – is noteworthy.

When her £10,000,000 donation turned into a royally attended opening (in the quite Royal sense of the word as Ann, HRH The Princess Royal), Ms. Rowling didn’t give a flowery speech or make it about her in any way.  She applauded the unveiling, she was thanked by a number of dignitaries and researchers and, well there was a PRINCESS at the thing!

Her simple statement that was given to press said that she was “elated to see the clinic formally open.” And that had “watched the clinic from the planning stages to being fully built and now ready to open” and how very proud she was of it, and to see her mother’s name on the clinic.

Some in the MS community grumbled when Rowling wasn’t living up to their hopes when word first reached us that the author had a connection to MS.  As sales of the Potter books reached as high as a hippogriff can fly, more people began to assert that it was her “responsibility” to do more, say more and to be more for our cause.  I think those voices can now be silenced.

The Anne Rowling Clinic is slated to delve deeply into the cause of progression and the ways to slow this disease.  Prof Siddharthan Chandran, professor of neurology and co-director of the clinic, may have said it best in his opening remarks; “Only by better understanding the biological processes behind these devastating diseases can we identify new targets for potential therapies and take them into clinical trials.”

Knowledge is power and, as the character of Arthur Weasley, in Rowling’s books once said, “Truth will out!”

I say, ‘thank you’ once again to JK Rowling for doing more than her fair share and doing so in grand, yet humble fashion.

Wishing you and your family the best of health.

Cheers

Trevis

Don’t forget to follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.

 http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/author-jk-rowling-contributes-to-the-ms-cause/?xid=aol_eh-ms_5_20131104_&aolcat=AJA&icid=maing-grid7%7Chtmlws-main-bb%7Cdl30%7Csec1_lnk3%26pLid%3D401335

Possible Links Between Endothelial Health and MS

Possible Links Between Endothelial Health and MS

If you or a loved one suffers from MS, you know how debilitating, painful, and incapacitating that condition can be.  Consequently, every new development and treatment in the field has the potential to bring real change to the lives of those affected with the condition.  Recent studies have been indicating possible links between endothelial health and MS.  Let’s take a look at this possible link, and the implications.

First, you have to start with a basic understanding of endothelial health, as well as how the mechanism of that physical system intersects with the pathology of MS.  We will start with multiple sclerosis; as you are likely already aware, MS itself is a condition in which the coverings of nerve cells are damaged, impacting their ability to communicate properly.

The endothelial system, on the other hand, is the protective system of your body’s circulatory system.  Much how the nerves have ‘coverings’ which are damaged to cause MS in the first place, your circulatory pathways are protected by endothelial cells, which  line the insides of your veins, capillaries, and arteries.

Until fairly recently, endothelial health was not even recognized as something important to a body.  The endothelia were thought of as being relatively inert, simply there to protect the circulatory cells.  This all changed when people began to realize that endothelial health plays an integral role in the circulatory and endocrine systems themselves.  Within a circulatory context, endothelial health is responsible for regulating your blood pressure, coagulation, and several other incredible important functions.  Within the context of hormones, the 60,000 cumulative miles of endothelial cells within your body are extremely important for the secretion of enzymes, hormones, and other chemical compounds.

So how do the two systems tie together?

Usually, it will start with a person causing damage to their endothelial health.  This can either be due to genetic factors or lifestyle choices (stress, eating bad fat, sleep deprivation, and more all can cause endothelial damage).  Once damaged, this leads to an imbalance in your nitric oxide levels, which then can impact the endothelial signaling inside your body.  At that point, it then disrupts the circulatory and endocrine systems, and it is these larger systemic disruptions that can aggravate MS.

Taking care of your endothelial health can offer many benefits; not only will you reduce the risk of developing numerous medical conditions such as MS, but you will also make reduce the risk of heart disease and blood pressure issues at the same time.

Multiple sclerosis, death and assisted suicide

http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/a-discussion-beyond-death-and-multiple-sclerosis/?xid=aol_eh-ms_6_20130805_&aolcat=AJA&icid=maing-grid7%7Chtmlws-main-bb%7Cdl9%7Csec1_lnk3%26pLid%3D356021
 MS & death

Why All-Natural Health Products Are Superior

Why All-Natural Health Products Are Superior

If you follow medical news, you’re aware of the vast array of supplements available on the market designed to promote good health.  However, not all products are created equal, and there is growing evidence that suggests supplements composed entirely of all-natural products are far superior over the long term to those that contain manufactured pharmaceutical ingredients, for several reasons.  Let’s take a look at a few examples which illustrate this advantage:

·         Personal Health and Hygiene Products – Think of things like skin creams, moisturizers, even shampoo and conditioner products.  You see how many of them advertise that they are chemical and odor free these days?  This isn’t a coincidence; people are aware that additives to these products designed to be applied to your skin can easily cause rashes, irritation, or even allergic reactions in some people.  Chemical free and natural is the quite obviously the way to go when buying these products.

·         Hormone-disrupting Substances – Another class of substances that was in heavy use in health products are called phthalates.  This is a particular kind of plasticizing agent, commonly used as coating for pills, tablets, and other products which are ingested.  Other industry uses for the chemicals?  Industrial lubricants, emulsifiers, detergents, glues, paint, and more.  Sounds exactly like something you want to put into your body, doesn’t it?  Tallow is another example here; the parabins used in deodorant have been linked to alarming rates of cancer development in laboratory animals.

·         Anti-oxidants and ORAC Scale Rating – Health products which use all natural substances are often rich in anti-oxidants, the benefits of which are well-known.  They also tend to have higher oxygen radical absorbance capacity (otherwise known as their ORAC rating or value); this means that your body is better able to process and absorb the nutrients and valuable supplements.  Manufactured products tend to have low values on this scale, which means that most of the beneficial vitamins and nutrients end up in your bladder, expelled in your urine; not where you want them to be!

Remember, this list is hardly exclusive of all the benefits natural health products offer!  Products based on natural herbs often are significantly better for you from a nutritional standpoint as well, and can carry heavy doses of the everyday vitamins you need the most of, such as vitamins B, C, and D.  So the next time you’re buying health products, buy natural, botanical, vegan, or PETA certified products; your body will thank you.

Multiple Sclerosis, MS and sex- Lets talk about it.........

Sex and marriage is a conversation piece in itself.  Sex and multiple sclerosis opens up a whole new can of worms. Now we are talking about function, sensation and mental motivation.

 

Being that I am in my forties, prime menopausal time and without a uterus for the past five years due to a hysterectomy, one would conclude that those factors alone would lead to an absentee sex drive.  Then add on the antidepressants , who's known side effects are just that and it seems like a losing battle.  But its not.  And when it comes to matters of intimacy, which I feel are important in a strong marriage, its important to not give up, although it seems to be the easier route.

 

Let me point out immediately, that there are far and few days that I ever feel "horny", as my husband would put it.  But women and men operate on a different sexual level.  In my own belief and personal experience, sex for a women starts in her brain, then travels to her vagina.  Perhaps this is true for an older man with compromised sensations in his crotch as well.  Even without MS, as we age our neurons aren't firing as strongly as we would like.  Also, let me add that there hasn't been a female version of viagra made available as of yet. 

 

So there are two issues here that need to be addressed- the physical crotch area and the mind. 

 

Lets start with the physical, because we are limited to some degree with options.  SO you have a vagina or penis, but unless that is pointed out to you, it goes unnoticed physically.  You need to find a counteractive solution.  What will make you "feel" your genitalia once again?  They have come out with all types of sex creme's that supposedly work as a stimulant to those areas....never worked for me, as a matter of fact , one of the last ones which I tried actually gave me irritation for several days to follow.

 

 What has worked for me as a female? Wellbutrin, or anything with a stimulant effect such as provigil.  I recall back in my days of college snorting cocaine for finals and the stimulant effect made me very susceptible to "horniness".  I'm not proud to admit that I did that, but it was over two decades ago as an invincible youth.  But the point being made that stimulants that ARE PRESCRIBED by your doctor may have the same effect on your sexuality for you as they did for me.  As a matter of fact wellbutrin came as a suggestion from my doctor to combat the sexual side effects of the luvox that I take for anxiety attacks.  But here's the downfall for me regarding stimulants.  Aside from having a heightened sexual drive, I can NOT stand the way I feel on them.  Sex only lasts a short time- maybe minutes in my own encounters but the remains of the stimulant effect lasts an entire 24 hour period. There is nothing worse for me then to feel like my mind is racing and I've just consumed 16 cups of coffee.  And that's probably the amount of coffee you would need to get the same effect.  However, others handle stimulants quite well. Its a personal experience type of scenario.  Wellbutrin also may work differently on each indivisual, as it is also an antidepressant, one known for those side effects.  Aderol also can have the same benefits as reported to me by two friends with Attention deficit disorder. Vulnerably I would also like to add that marijuana in a very limited use setting; such as two or three puffs totally re-introduces you to your crotch.  Its sort of like "HELLO-Remember me>"".  Its magical, and the orgasm is quite enhanced due to the thc properties. Because I suffer from panic attacks occasionally I have learned the hard way that 3 tokes is sufficient and don't recommend anymore. Pot enhances any feeling - good or bad.

 

Mentally, your current state of mind is important - First, I would like to express that since switching to tecfidera, bg-12 i do feel that there is less stress in my MS world due to the drugs mildness in side effects.  A clearing of the mind is also important, sort of like a meditation, leaving it open and less diluted from the immediate concerns of everyday living.  Once your mind is at ease you can train yourself to divulge in fantasy and if you are even braver turn those fantasies into realities,  You see , sex just like any other activity or event needs to be one-upped to keep interest.  Your not programmed to look forward to repetition.  Think back to the days where you went to first base and reminiscing the following few days led to arousal.  Then you went to third base and took second base for granted, the excitement was gone.  Home run, and there was no going backwards.  Now look where you are today- progression is needed. Its human nature and once again this is where your imagination comes to play- no guilt; just gust.  So pull out those handcuffs, buy yourself a magic wand-the BEST vibrator on the market, learn to talk fetish tongue, dress sexy and get crazy.  You only have one life and one genitalia- live it up.

Up and coming new MS superior drug!!! Knock on wood......

Immune Boosting Therapy for Multiple Sclerosis May Be the 'Holy Grail'

Researchers claim a new therapy that protects myelin is a big breakthrough for multiple sclerosis, but patients shouldn't expect a new treatment option any time soon.

Immune Boosting Therapy for Multiple Sclerosis May Be the 'Holy Grail'

By Jeffrey Kopman, Everyday Health Staff Writer

WEDNESDAY, June 5, 2013 — A groundbreaking multiple sclerosis treatment has passed a major test in its journey towards helping the two million plus living with the autoimmune disease, according to a study from Northwestern Medicine Research.
A phase 1 trial tested the new therapy which manipulates the white blood cells of MS patients and resets their immune systems. The first test on humans successfully reduced the immune systems’ reactivity to myelin – an insulating layer that protects the spinal cord, brain, and optic nerve – from 50 to 75 percent.
The destruction of myelin, a reaction caused by MS, disrupts communication from the brain to the rest of the body, and causes symptoms like mild limb numbness, paralysis, and blindness.
Similar therapies have proved to be effective for treating MS, but have also come with severe side effects because they weaken the immune system even more. While MS progression might be stopped, a weakened immune system can lead to infections and higher rates of cancer.

"Very few investigators are trying therapies in humans aimed at simply turning off unwanted immune responses and leaving the rest of the immune system intact to fight infections — to do surveillance against cancer," Dr. Lawrence Steinman, a professor of neurology at Stanford University, told HealthDay. "The early results show encouragement."
Researchers agreed that these findings, while preliminary, could have a large impact.
"The therapy stops autoimmune responses that are already activated and prevents the activation of new autoimmune cells," said Stephen Miller, the Judy Gugenheim Research Professor of Microbiology-Immunology at Northwestern University Feinberg School of Medicine, in a press release. "Our approach leaves the function of the normal immune system intact. That's the holy grail."

The Reliability of Phase 1 Trials for MS

The trial is a promising sign for the future of MS treatment, but it did have a few limitations. The Northwestern University study only included nine participants. Small samples are typically associated with phase 1 trials, but can still cause problems for the reliability of the results.
Researchers determined that the sample was not large enough to reach statistical significance for preventing the progression of MS. However, the trial did show that higher doses of white blood cells prevented some of the destruction of myelin, and there were no serious side effects reported.
For now, multiple sclerosis patients have some reason for optimism.
“The study was small – but important factors were observed,” said Trevis Gleason, an Everyday Health Leader. “The research is deserving of our attention as researchers now raise funds and recruit for Phase II trials.”
A phase 2 trial will explore how effective the therapy is in newly diagnosed patients, and will expand the sample size for further evaluation.

Gone for Good- Clinical Isolation syndrome

Like a complete ass and with regret for the past few years I thought I was invincible. Quite a juvenile approach from a women at the ripe age of 46. You see approximately 7 years ago I was diagnosed with clinical isolation syndrome. What this means , in a kind way, you don't have multiple sclerosis yet, but your going to get it any day now. For clinical reasons one must present ms symptoms in an episode more then once before the diagnosis is made.

My symptoms appeared initially as a tingling yet scolded feeling in my left fingers and within a few days the feeling began to grow up my arm, with a mild squeezing feeling around my forearm as if someone was holding me tight and not letting up. Since a blog should be one based on honesty, I will tell you that this came upon me just hours after I had performed an over-the - knee spanking on one of my clients. Back then I was a professional dominatrix (NOT a sex worker, more so a social worker in leather, lol). As I drove home from my dungeon, I chided myself for spanking Thomas, the fireman, too harshly. Perhaps in the future, I should interchange spanking with a light weight paddle or hair brush i though. Then the thought crossed my mind that perhaps I had singed my fingers on the cup of tea that I made in the microwave and drank on the way to my Long Island dungeon.

I must stress that Multiple Sclerosis chose me, and its not a good diagnosis for a hypochondriac. Because i was so busy at the time promoting a book, I let this one go by a day until my arm eventually was being choked. Then all the sudden it dawned on me that this is my left arm and isn't the left side of any body part a symptom of stroke or perhaps heart malfunction? With this thought in mind, i drove myself to the emergency room and had just about every blood test, ekg and scan completed. The only thing they did not do was an MRI, but they referred me out to a neurologist for further review.

Of course as a new patient one must wait to be seen even though i paid a premium rate of 670 a month for my own insurance policy. But the Internet kept me engrossed in all possible diagnoses from rheumatoid arthritis to a slipped disc in my back. Three weeks later I was finally seen and all these silly tests were performed such as closing my eyes and holding both arms out straight and even, which I could not do, to touching my nose as directed. The two most unforgettable moments that day were when my neurologist asked me to put my chin down close to my chest and asked if I felt electricity- and yes I did, later I found out that this is called lhermitte's sign and his stern , yet concerned voice stating that ONE out of EIGHT HUNDRED people will be diagnosed in their life time with MS. And with that departing thought he wrote me out a script for prednisone and an MRI with contrast of my brain, cervical and thoracic spine.

Three weeks later I returned to his office to be told that my MRI revealed one lesion in my cervical spine and a few old ones in my brain as if I had episodes previously that i was unaware of. The tears flowed steady, my mascara was now in a Frankenstein design and I thought to myself- why me, im a strong lady-nothing weak about me for sure? Hearing the diagnosis was actually a thousand times worse then the ms symptoms that presented themselves. I cried the next few days, but made a conscious effort to NOT read up on MS. I couldn't allow myself to get to close to the information due to fear, I would hold onto my doctors only words- take the avonex and this disease will mildly progress and i should not be to concerned with all the new medical break throughs. In hind sight, easy for him to say, seeing that its routine for him to speak to ms patients on a daily basis and he's not shooting a four inch needle into his leg muscle once a week.

Well obviously not making a long story short, although i did try, I stayed on the avonex for 2 years and my MRIS actually improved. But because the avonex, an interferon, relentlessly made me sick-so sick, flu sick times one hundred, I had had enough. Copaxone, would be an alternative therapy that i would try although it was a daily shot rather then a weekly one. This i could handle initially until around month seven i experienced a rare side effect where my diaphragm felt as though it locked shut and i gasped for air while my husband called 911. By the time they arrived the symptoms had let up but my anxiety did not, and i would not be returning to copaxone again. Now what?

Well around this time it was the "yearly" time and I was due for my MRI's . After review the mri had revealed that the original cervical lesion had shrunk drastically to where it was almost unnoticeable. My doctor gave me a choice after explaining the clinical criteria for MS. He said I really had the option to wait out a second episode, chances being 50 percent within the first 5 yrs of first episode and 90 percent within the next ten years. Or once again, i could protect myself by returning to avonex. And this where the term"turn back the hands of time" comes into play. I, foolishly, in retrospect gambled on my myelin sheath invincibility and i lost. After two years of not being prophylactic, and even ignorantly skipping my MRI on the second year, decided that it was time to see if the gamble paid off. It didn't obviously as I think I let the cat out of the hat a few paragraphs ago. The last phone call from my neurologist stated that I have lesions "all over the place"., in his own words. One major one in the pons of my brain a few small scattered ones in the thoracic and a quite large one in my cervical. WOW, and now I can say I'm scared, and now bi can tell you I took my first avonex shot tonight after several years, and furthermore I can only hope that no one would negate their health responsibilities as I did.