Out-of-Pocket Costs for Neurology Drugs Rise Sharply

By Pat Anson, PNN Editor

Out-of-pockets costs for medications to treat multiple sclerosis, peripheral neuropathy and other neurologic conditions rose sharply over 12 years, according to a new study that found the average monthly cost to patients for MS drugs rose nearly 2,000 percent.

One in six people lives with a neurologic disease or disorder, according to the American Academy of Neurology. The annual cost of treating neurologic disorders in the United States is more than $500 billion.

“With many new, high-priced neurologic drugs coming to market and a recent rise in use of high-deductible insurance plans, which shift costs to patients, it is likely out-of-pocket costs will continue to increase,” said lead author Brian Callaghan, MD, of the University of Michigan in Ann Arbor.

The study was published online in the journal Neurology.

Callaghan and his colleagues examined out-of-pocket costs for over 912,000 people with MS, neuropathy, epilepsy, dementia or Parkinson’s disease who were privately insured from 2004 to 2016.

Researchers found that out-of-pocket costs for MS drugs showed the steepest monthly increase. Patients paid an average of $309 a month in 2016, compared to just $15 in 2004. Costs for MS patients in high-deductible health plans were even higher, averaging $661 per month or nearly $8,000 a year.

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Co-pays and deductibles for brand name medications for neuropathy, dementia and Parkinson’s disease also rose considerably.

“Everyone deserves affordable access to the medications that will be most beneficial, but if the drugs are too expensive, people may simply not take them, possibly leading to medical complications and higher costs later,” said Ralph Sacco, MD, President of the American Academy of Neurology.

Researchers said neurologists and other physicians usually do not know the cost of drugs they prescribe, so they don’t discuss alternative medications based on a patient’s disease, insurance plan, pharmacy and deductible.

“Out-of-pocket costs have risen to the point where neurologists should be able to consider the potential financial burden for the patient when prescribing medication, but they do not have this information available to them,” Callaghan said. “Neurologists need access to precise cost information for these drugs in the clinic so when they meet with patients to make treatment decisions, they can help minimize the financial burden.”

Even when a generic version of a drug becomes available, it can take years for out-of-pocket costs to drop substantially. It took five years for out-of-pocket costs for gabapentin, for example, to drop to those of other tricyclic anti-depressants after gabapentin went generic in 2004.

A 2015 study found an “alarming” increase in costs for MS drugs and suggested the price increases were coordinated by drug companies.

1 in 5 Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, PNN Editor

Nearly one in five patients who are told they have multiple sclerosis are misdiagnosed with the autoimmune disease, according to a new study of patients referred to two MS treatment centers in Los Angeles. The patients spent an average of four years being treated for MS before receiving a correct diagnosis.

MS is a chronic disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue. The symptoms are similar to those of several other chronic conditions – including neuropathy, migraine and fibromyalgia – which often leads to a misdiagnosis.

Researchers at the Cedars-Sinai Multiple Sclerosis and Neuroimmunology Center analyzed the cases of 241 patients who had been diagnosed by other physicians and then referred to the Cedars-Sinai or UCLA MS clinics.

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Their findings, published in the journal Multiple Sclerosis and Related Disorders, indicate that 43 of the 241 patients (18%) with a previous diagnosis of MS did not meet the criteria for the disease.

"The diagnosis of MS is tricky. Both the symptoms and MRI testing results can look like other conditions, such as stroke, migraines and vitamin B12 deficiency," said lead author Marwa Kaisey, MD. "You have to rule out any other diagnoses, and it's not a perfect science."

The most common correct diagnoses was migraine (16%), radiologically isolated syndrome (RIS) (9%), spondylopathy (7%), and neuropathy (7%). RIS is a condition in which patients do not experience symptoms of MS even though their imaging tests look similar to those of MS patients.

The misdiagnosed patients received approximately 110 patient-years of unnecessary MS disease modifying drugs. Nearly half received medications that carry a known risk of developing progressive multifocal leukoencephalopathy, a potentially fatal brain infection.

"I've seen patients suffering side effects from the medication they were taking for a disease they didn't have," Kaisey said. "Meanwhile, they weren't getting treatment for what they did have. The cost to the patient is huge — medically, psychologically, financially."

The cost of disease modifying medications for an MS patient in the U.S. exceeds $50,000 a year. Investigators estimated that the unnecessary treatments identified in this study alone cost almost $10 million. 

Researchers hope the results of the study will lead to new biomarkers and improved imaging techniques to help prevent future MS misdiagnoses.

A similar study in 2016 also found that MS patients were often misdiagnosed. One third of the patients were misdiagnosed for a decade or longer, most took unnecessary and potentially harmful medication to treat a disease they didn't have, and some even participated in clinical trials for experimental MS therapies. About a third suffered from morbid thoughts of death.

How Sodas and Smoking Worsen Disability

By Pat Anson, PNN Editor

Most doctors will tell you that smoking and drinking sweetened beverages like soda every day will lead to poor health. They can also worsen your risk of disability if you have rheumatoid arthritis or multiple sclerosis, according to new studies.

Researchers in Germany wanted to know how diet can affect the progression of multiple sclerosis (MS), a chronic disease that attacks the body’s central nervous system, causing numbness, difficulty walking, paralysis, loss of vision, fatigue and pain.  

They surveyed 135 MS patients to see how close their diet was to the Dietary Approaches to Stop Hypertension (DASH) diet – which limits foods that are high in saturated fat and sugar – and recommends whole grains, fruits and vegetables, low-fat dairy products, lean meats, poultry and fish, nuts and legumes.

Researchers did not find a link between what the participants ate and their level of disability, but there was a strong association with what they drank.

"While we did not find a link with overall diet, interestingly, we did find a link with those who drank sodas, flavored juices and sweetened teas and coffees," said study author Elisa Meier-Gerdingh, MD, of St. Josef Hospital in Bochum, Germany.

MS patients who consumed the largest amounts of sugar-sweetened beverages – averaging about 290 additional calories per day -- were five times more likely to have severe disability than people who rarely drank sweetened beverages.

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"While these results need to be confirmed by larger studies that follow people over a long period of time, and the results do not show that soda and sugar-sweetened beverages cause more severe disability, we do know that sodas have no nutritional value and people with MS may want to consider reducing or eliminating them from their diet," said Meier-Gerdingh, who will present her findings at the American Academy of Neurology's annual meeting in Philadelphia in May.

Smoking Worsens Risk of Rheumatoid Arthritis

Previous studies have also found that smoking increases your chances of having MS and several other chronic pain conditions.

A new study by researchers at Brigham and Women's Hospital in Boston demonstrated for the first time that women who stop smoking can reduce their risk of developing the most severe form of rheumatoid arthritis (RA). But it takes time to have a beneficial effect.

"Ours is the first study to show that a behavior change can reduce risk for seropositive RA. Risk isn't just about genes and bad luck--there's a modifiable environmental component to the onset of this disease and a chance for some people to reduce their risk or even prevent RA," said corresponding author Jeffrey Sparks, MD, of the Division of Rheumatology, Immunology and Allergy at the Brigham.

Sparks and colleagues analyzed data from the Nurses' Health Study, which tracked the long-term health of registered nurses from across the U.S.  Brigham researchers identified over 1,500 nurses who developed RA, but they were most interested in those with "seropositive" RA as opposed to "seronegative" RA. Patients with seropositive RA generally have more severe joint deformities and disability.

For seropositive RA, the risk of disability began to go down about five years after women quit smoking and continued to decrease the longer they stayed non-smokers. Participants who quit for good reduced their risk of seropositive RA by 37 percent after 30 years. The team did not find any association between seronegative RA and smoking.

"One of the lessons here is that it takes sustained smoking cessation to reap the full benefit," said Sparks, who published his findings in the journal Arthritis Care & Research.

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"Whereas for other diseases, such as cardiovascular disease, quitting smoking can provide a more immediate effect, here we're seeing benefits decades later for those who quit smoking permanently."

RA is a chronic autoimmune disease in which the body’s own defenses attack joint tissues, causing pain, inflammation and bone erosion. While the biological mechanisms that link smoking and the development of RA are unclear, Sparks believes that smoking may contribute to the formation of RA-related antibodies that increase inflammation.

In future studies, Brigham researchers want to extend their investigations to include men and to see if smoking cessation can prevent the formation of RA-related antibodies and stop progression of the disease.

Experimental Stem Cell Therapy Reverses MS

By Steve Weakley

A small but promising study has shown that an experimental stem cell therapy can dramatically slow the progression of multiple sclerosis. Some MS patients treated with their own stem cells even experienced a reversal of their symptoms that has lasted for years.

MS is a chronic, incurable and progressive disease that attacks the body’s central nervous system, causing numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain. The disease affects over 2 million people around the world.

An international team of researchers enrolled 110 patients in the study with relapsing-remitting MS, a version of the disease where symptoms appear for a few days or weeks, followed by periods of remission.

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Half of the patients were treated with standard MS medications as a control group, while the other half went through a four-step experimental procedure.

The experimental group was given chemotherapy to stimulate the production of hematopoietic stem cells that recharge the immune system. Those stem cells were then removed from the patients’ blood and frozen.  After that, a more powerful round of chemotherapy was used to wipe out the patients’ damaged immune systems, and the thawed stem cells were put back into their bodies by transfusion.

Over half of the 55 patients in the control group continued to see their disease progress, while only three patients got worse in the experimental stem cell group. The other 52 had fewer symptoms and a better quality of life. The findings were reported in the journal JAMA.

“It’s the best evidence comparing stem cell transplants to standard therapy,” Harry Atkins, MD, a stem cell scientist at Ottawa Hospital in Canada told Vox . “This is one of the first pieces of proof that, yes, patients who have aggressive MS do better after a transplant than with the standard therapy.”

“The stem cell therapy gets patients off lifelong treatments and gives them results that have never been seen before with this disease,” said lead author Richard Burt, MD, a stem cell researcher and physician at Northwestern University.

One of Burt’s patients who benefited from the stem cell transplant is 28-year old Amanda Loy, who told Vox that prior to treatment she needed a cane to walk and was unable to work.  Within a year of treatment her symptoms had disappeared.

“It sounds so dramatic, but (the treatment) gave me my life back,” said Loy, who now works as a full-time teacher, runs half marathons and plays soccer with her 10-year-old son. She no longer takes MS medication.

Researchers still don’t know if the stem cell therapy will work with other forms of MS or how long the benefits will last. But it’s the first treatment that has shown the potential to actually reverse the disease.

“I do think it’s going to change the natural history of MS,” says Burt. “When you use it in the right group of patients with MS, you get these really gratifying results.”

A recent study by Australian researchers found that another experimental stem cell therapy shows promise in treating patients with progressive multiple MS, the most difficult-to-treat form of the disease.

Scientists at the University of Queensland extracted immune cells from patients who had either primary or secondary progressive MS. The cells – known as T-cells – were then “trained” in a laboratory to target and kill cells infected with the Epstein Barr virus, which has long been associated with MS.

When the altered T-cells were injected back into the bloodstream of 10 patients, seven said their symptoms improved. They had more energy, improved concentration, slept better, and had improved vision and balance. There were no serious side effects.

Puppy Medicine

By Jennifer Hochgesang, Guest Columnist  

I was miserable. My trigeminal neuralgia pain from multiple sclerosis was still uncontrolled, leaving me mostly housebound. I had also just been diagnosed with vestibular migraines, which cause vertigo. Sometimes the vertigo was so extreme I was unable to walk, the world moving like a drunken carnival ride that never stopped even when my eyes were closed.  

And while the trigeminal neuralgia (TN) was on the right side of my mouth, I had just gotten ulcers out of nowhere on the left side. Anytime I drank something I felt a blind searing pain that took minutes to subside.

I was just barely pushing through, not sure how much more I could take. But I had an appointment to see a puppy at a nearby animal shelter.

I have had dogs all my life. Each one has been a part of the family and amazing creatures: loving, smart, playful and giving. My last dog, Aequoris, passed away two years ago and her sister Zola a little before that. I needed time before getting another dog. But as I went through this year in the worst pain of my life, I started to slowly think about getting a dog again.

But I had many questions to ask myself: Was I well enough to care for a dog? Could I afford a vet? Would the dog get enough exercise? Did I have help for the times I was too sick to care for it? Were there walking services in my area or boarding services if I had to go to the hospital? Would pet insurance cover those situations? Would my family members want a dog and be willing to help?

Even as I answered all those questions on the way to the shelter, I almost cancelled. I just felt so physically awful and it was hard to think of enjoying a puppy.   

When we got there, they put us in a small room so we could meet the puppy and get to know her a little. She was an 11-week old rescue from a litter of five. They said she was a Spaniel mix, but really they had no idea what breed she was.

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When they brought her in, my first thought was that she was pretty funny looking. Then she actually ran up to me and kissed me right on the left side of my mouth, the one that doesn’t have my TN. It was like she knew! I couldn’t believe it!

I held her and smelled that sweet puppy smell. She wasn’t funny looking after all. She was beautiful. She had dots of brown over her eyes, silky black fur down her back, and fawn-like legs with spots everywhere.

We played and I fell in love within seconds. I watched her play, moving like a little infant excited with the world. I laughed as she tried to catch a ball and fell, and was so moved when she came to me for comfort.

Suddenly I realized I wasn’t in as much pain! Holding her, rubbing her soft fur and watching her jump around just did something for me – like it was medicinal. She was helping me. I knew at that moment she would bring that gift to me and in return I would do whatever I could to make sure she was cared for: vet visits, exercise, training and love. I named her Sasha: helper of womankind.

Sasha is now almost six months old. She is crazy smart and learned sit, down, and up in the air the first day. I have also started working with a trainer so she doesn’t touch the right side of my face and set off a TN attack.

I can have Sasha off leash in the backyard and throw the ball for her to catch with my 7-year-old daughter, who thankfully runs like crazy with her.

But she still rings the bell to go outside seven times an hour and tries to eat my socks no matter how many times I say no. She grabs tissues and runs so fast, dodging furniture and ducking under and over until you want to pull your hair out.

But then you leave the room for one second and come back to find her butt wiggling, tail thumping on the floor, and plaintively whinnying, “I’m so happy to see you. I missed you so much.”

Sasha has the sweetest face and when she lays next to you with her head curled in your lap letting you pet her, looking up at you -- it’s just pure love.

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Is it a coincidence that in the past five weeks I’ve finally found the food triggers for my trigeminal neuralgia? I’ve stopped eating dairy, citrus, chocolate, caffeine and sugar. My pain has gone down so much. It’s like night and day since I got Sasha. I still need to work with a nutritionist to make sure I’m eating the right foods, but for now this is working for me.

Sasha is still a baby so I haven’t expected her to do much more than be a cute furball. But one day while I was working on my iPad, she came and positioned herself right in my lap. I had to move her over a little so I could work. She still stuck like glue to the left side of my body with her head on my leg or arm throughout the day. I thought she was just tired.

Then slowly my TN pain began to increase, until I had a really awful volley of attacks every few minutes. Sasha moved closer and closer to my face as the pain got worse. During one brutal attack she kissed me on the left side and I was so thankful. She actually understood I was in pain and where it was. She knew when it was getting worse. And all she wanted was to heal and comfort me.  

As I write this, Sasha is sitting right here next to me chewing on a rawhide pretzel. She brought seven toys up on the couch in case she gets bored with the pretzel and wants me to throw something. I take a break from writing to pet her and sometimes she will turn over and give me her belly to rub. Soon she’s going to get up and ring that bell to go outside in the light snow.

She is just the most beautiful thing.

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Jennifer Hochgesang lives in Illinois. Jennifer has multiple sclerosis, trigeminal neuralgia and vestibular migraines.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

New Therapy Helps Improve MS Symptoms

By Pat Anson, PNN Editor

An experimental stem cell therapy developed by Australian researchers is showing promise in treating patients with progressive multiple sclerosis (MS), the most difficult-to-treat form of the autoimmune disease.

MS is a chronic and incurable disease which attacks the body’s central nervous system, causing numbness, difficulty walking, paralysis, loss of vision, fatigue and pain. Most patients go through periods of remission before the condition worsens and turns into secondary progressive MS. In primary progressive MS, the disease steadily gets worse from the start, with no periods of remission.

Scientists at the University of Queensland extracted immune cells from patients who had either primary or secondary progressive MS. The cells – known as T-cells – were then “trained” in a laboratory to target and kill cells infected with the Epstein Barr virus.

When the altered T-cells were injected back into the bloodstream of 10 patients, seven said their symptoms improved. They had more energy, improved concentration, slept better, and had improved vision and balance. There were no serious side effects.

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The Epstein Barr virus (EBV) has long been associated with MS, which is why the researchers targeted it. The virus also causes infectious mononucleosis, a glandular fever known as “mono.”

“Although this was an uncontrolled study, our finding of a substantial relationship between clinical response and EBV reactivity and polyfunctionality of the T-cell product, of which both the patients and examining neurologists were unaware, suggests that the clinical benefit might be due to the T cell therapy,” researchers reported in the journal JCI Insight.

“Our data add to the mounting evidence for a pathogenic role of EBV infection in MS. Because T-cells access all CNS (central nervous system) compartments, T-cell therapy targeting only EBV-infected B cells is a treatment modality that could offer favorable safety and durable efficacy.”

This was a Phase I trial, where the primary goal of researchers is to make sure a treatment is safe to use. More advanced studies with a larger number of patients are needed to see how well altered T-cells actually work on MS.

Cannabis Somewhat Effective in Treating MS

By Pat Anson, PNN Editor

Medical cannabis is mildly effective in relieving pain and other symptoms in patients with multiple sclerosis (MS), according to a new study published in JAMA Network Open.

Spanish researchers analyzed 17 clinical trials involving over 3,100 patients – one of the largest reviews to date on the efficacy of cannabinoids in treating MS. Overall, they found that cannabis was safe, but had limited effectiveness in relieving pain, muscle spasticity and bladder dysfunction.

“Small but statistically significant differences were found in favor of cannabinoids for all 3 symptoms,” Marissa Slaven, MD, and Oren Levine, MD, of Ontario’s McMaster University said in a JAMA commentary. “The authors conclude that cannabinoids provide a mild reduction in subjective outcome assessment of uncertain clinical significance and that they are safe.”

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MS is a chronic and incurable disease which attacks the body’s central nervous system, causing numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

Medications and disease modifying drugs currently used to treat MS can cost tens of thousands of dollars a year – so a low-cost alternative treatment would be welcomed by many patients.

Four different medical cannabinoids were used in the 17 trials that were evaluated. They contained different levels of cannabidiol (CBD) and tetrahydrocannabinol (THC), the active ingredient in marijuana that makes people high. A lot of uncertainty remains about whether CBD or THC are more effective in relieving MS symptoms – something the JAMA study failed to resolve.

“It is critical that researchers gain a deeper understanding of both of the major (THC and CBD) and minor components of this therapy to unlock its full potential,” said Slaven.

“Given the relative safety of these agents, lack of strong evidence of other effective treatment options, and increasing access in some jurisdictions, it may seem appealing to include cannabinoids in the armamentarium of therapies for MS. But carefully conducted, high-quality studies with thought given to the biologic activity of different cannabis components are still required to inform on the benefits of cannabinoids for patients with MS.  

"The bottom line is there is certainly something happening with cannabinoids in regard to symptoms," Nicholas LaRocca, vice president of healthcare delivery and policy research at the National Multiple Sclerosis Society, told HealthDay. "In spite of very strong interest in cannabinoid therapy, we really have relatively little in terms of good research to guide us in terms of what does and what doesn't work, what works for which types of individuals, and so forth."

A small study was recently launched in Australia that might answer some of those questions. Emerald Health Pharmaceuticals of San Diego is using a synthetic version of CBD – called EHP-101 -- to treat about 100 people who suffer from MS or scleroderma, another autoimmune disease. The placebo controlled Phase I trial is meant to determine whether EHP-101 is safe and has any side effects. Results are expected next year.

A Reality Check for CBD Oil

By Roger Chriss, PNN Columnist

The Food and Drug Administration’s recent approval of the anti-seizure medication Epidiolex has attracted a lot of new attention for CBD (cannabidiol). But enthusiasm was already on the rise. CBD is being promoted as a “new medical elixir” and marketed in everything from cosmetics to bottled water.

CBD was isolated in marijuana in 1940 and its chemical structure was characterized in 1963. It does not have euphoric effects and is increasingly being used in oils, edibles and other forms to treat medical conditions such as pain.

Last November the World Health Organization released its “Cannabidiol Pre-Preview Report”) stating that “CBD is generally well tolerated with a good safety profile.” The WHO report found “no evidence of recreational use of CBD or any public health related problems associated with the use of pure CBD.”

Last month the FDA approved Epidiolex, a CBD-based drug, to treat seizures caused by two rare forms of childhood epilepsy, Dravet syndrome and Lennox-Gestaut syndrome.  It was the first -- and so far only -- marijuana-based drug to be approved by the agency.

“In terms of solid evidence, the one thing we really know about CBD is that it can be helpful for rare childhood seizure disorders,” Ryan Vandrey, PhD, a cannabis researcher and associate professor of psychiatry at Johns Hopkins University, told Health.com. “There’s not yet sufficient evidence to support its use for any other reason.”

This is not for lack of effort. Zynebra Pharmaceuticals recently tested a topical CBD product for osteoarthritis knee pain with mixed results. The Phase 2 clinical study did not meet its primary endpoint of reducing the average pain score, although there were some indications it improved function and reduced pain severity.

A small clinical trial of CBD for Crohn’s disease in Israel in 2017 was also negative, finding “CBD was safe but had no beneficial effects.”

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GW Pharmaceuticals, the manufacturer of Epidiolex and Sativex, conducted a clinical trial in 2012 on CBD oil for pain due to spinal cord injury. The outcome was disappointing. The treatment arm of the study (55 subjects) and placebo arm (59 subjects) showed essentially the same level of improvement in neuropathic pain.

A 2015 study on CBD extracts for childhood epilepsy had puzzling results. Researchers reported in the journal Epilepsy & Behavior that “relocating to Colorado had a significant effect on response rates.” Drugs are not normally affected by zip code or time zone.

A recent review of studies on CBD oil and other forms of cannabis for the management of neurologic disorders was more positive, finding “there is strongest evidence to indicate benefits in treatment of spasticity and neuropathic pain in multiple sclerosis.”

CBD Safety Questions

But there are also cautions. Thorsten Rudroff, PhD, a professor of Health and Exercise Science at Colorado State University, told Neurology Advisor that more studies of CBD were needed.

“While cannabis seems to be effective for the treatment of MS symptoms like pain and spasticity, there are so many unknowns. For example, we don't know much about interactions with other drugs. Also, based on my own research, it seems that cannabis may further impair cognitive function in people with MS, especially in older adults,” Rudroff said.

There are safety issues as well. CBD oil has a good safety profile, but according to Food Safety Magazine, CBD oil products have problems with labeling accuracy, product quality and contaminants.

People with serious medical problems who want to use CBD oil need to reliably source a quality product. Medical users may have allergies, chemical sensitivities and, in the case of cancer patients or people with autoimmune disorders, a compromised immune system. For such people, purity and dose matter.

In addition, there are drug interactions to be aware of. Medline lists nearly a dozen medications that potentially interact with CBD, such as amitriptyline, ibuprofen and meloxicam, which are frequently used by people with health problems.

The decision to use CBD oil for medical purposes needs to be based on science, not marketing. As David Cassaret, MD, notes in his book, Stoned: A Doctor’s Case for Medical Marijuana: “Medical marijuana is becoming too widespread, and the risks are too great, to leave the patient to fend for himself, and to let the buyer beware.”

At present, however, CBD oil is very much a buyer beware world. And the current hype is not helping.

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Doctor, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

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A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

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Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

MS Is My Full Time Job

By Jennifer Hochgesang, Guest Columnist

I work full time. I mean really 24/7 full time.

A tremendous amount is required of me physically, mentally and ultimately spiritually. I often have to travel on short notice away from my young daughter. These trips always deplete me. And I don’t get very much sleep.

Even though I do this every single day and have for years, I’m constantly being told by pretty much everyone that I don’t really know what I’m talking about and I should listen to them.

I have to deal with big egos on these trips and quite literally they have a hand over me. I have a certain attire that I’m required to wear, and it’s not to make life easier for me, but for them. The only way I get to come home is when I nod my head in agreement and promise to continue working together on our “common” problem.

I often come back home with scars from my travels and even more often “little presents.” My daughter would like to shake them up and down, but I don’t think it’s safe so I put them up high.

The job is so exhausting that I’ve seen my doctor for medications to combat the fatigue, otherwise I wouldn’t get anything done. The extent of this is hard to explain to my friends and neighbors and they begin to make silent judgements.

These judgements grow larger when I cannot go hiking with the kids out in the sun on a 90-degree day. My job won’t let me, I say. They question it at first. But over time they just stop asking and if I see them at a school function, they will just nod my way or sometimes completely ignore me.

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JENNIFER HOCHGESANG

There was one time I thought I had made a great new friend. Her daughter was in the same class as my daughter. She was super funny and had her own struggles -- some of which she began to share, so I did as well. She was very artistic, intelligent and seemed to genuinely care.

As time went on we had a couple of play dates, went out to dinner with our girls, and then out of the blue I had to go on an emergency trip. I was so frustrated and sick of them. She told me she would take my daughter to gymnastics and Girl Scouts and not to worry.

Well, it was a long trip and three days after I got home I had to go again. I didn’t share too much about my trips to her. Why would she want to hear all the boring details? But then suddenly, my friend and her daughter weren’t at gymnastics. I texted her. She had switched days. I asked her why, wondering if we could switch as well. She was evasive, and I knew then my work was too much for her.

Part of me wanted to call and scream. If this is too much for you, how do you think I feel?

I want a regular job more than anything. Sometimes it feels like people think I want this job, as if I created it myself. They don’t realize that I had no choice in the matter.  But this is what I have to do and accept that I can’t have friends like other people.

I work seven days a week all day long. As I said, my job is demanding. It requires physical endurance, mental fortitude and spiritual grounding. Just in the last month, it has set new requirements.  Now I can’t drive, and I’m stuck at home in the winter in excruciating pain.

Mentally, my job takes names from me, messes with my ability to form sentences when I speak, and how to store and retrieve memories correctly. Spiritually, my job requires a belief in something -- something to hold onto -- whether it be a God or Goddess, a dog that has passed away, or a tree outside the window.

Without that, the job will beat you up past the point of understanding. You will be left with nothing:  no friends, no family, no wife or husband, no will, and no ability to laugh at life. Ultimately it strips away your humanity and your search for happiness.

If you can ground yourself and see past the pain, the falling and the shaking, and the numbness and confusion, you will not only survive -- you will still be able to strive for meaning in your life.

I work for MS. It’s sometimes better known as multiple sclerosis. Here is my schedule:

Monday: MS
Tuesday: MS
Wednesday: MS
Thursday: MS
Friday: MS
Saturday: MS
Sunday: MS

Do you have anybody in your life that works at MS like me or is in a similar place? If they say they are unemployed, they just mean they aren’t getting paid for their work. If you could trade jobs with them, would you? If so, would you trade with me first? My daughter needs me.

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Jennifer Hochgesang lives in Illinois. In addition to multiple sclerosis, Jennifer has endometriosis and trigeminal neuralgia. She is the mother of a beautifully kind and precious 7-year old daughter.

Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.