Too old for Gilenya?

In the Gilenya Facebook page we recently had a discussion about this article: Meta-analysis of the Age-Dependent Efficacy of Multiple Sclerosis Treatments
 
A meta-analysis in scientific thinking is a review of multiple previous studies to try and confirm a new hypothesis. In this case, whether the efficacy of MS drugs declines with the age of the patient and finally becomes ineffective.
 
MS Drugs
 
Drugs approved for MS are not drugs that can cure the disease. Nothing can cure the disease. We still don’t even know what causes it.
 
So the drugs approved for MS are basically drugs to halt progression of the disease. (And like I said, the cause of which is still unknown, so what halts the progression is still technically unknown.)
 
At this point there are so many DMT drugs for MS (17 to date) that attempt to work in many different ways. It can be a crapshoot.
 
But this article concludes that all DMT drugs that work on MS begin to decrease in efficacy after the age of 53. I wonder if this is why my doctor keeps asking me how old I am?
 
Are expensive
 
MS drugs, especially in this country, are exceedingly expensive. Not to mention the hundreds of others that aim to treat symptoms.
 
In one example, in 2004 the MS Society estimated that “the major drugs approved by the Food and Drug Administration (FDA) for relapsing- remitting MS can cost between $10,000 and $14,000 a year.”
 
Given the news that the cost of prescription drugs in the U.S. is now the highest in the world. Can you imagine what our costs are today?
 
And are difficult to measure
 
And speaking as someone who now has entered the secondary progressive phase of the disease without active exacerbations, it is often hard to tell if the drug I’m taking makes a difference.
 
The only really accurate test we have is the MRI, which can show If there are newer lesions. The idea is that if there are newer lesions the drug that you’re taking is probably not working as its goal is to keep new lesions from forming.
 
But there have been no tests that show that new lesions have any correlation with symptoms. So does the appearance of new lesions on the MRI mean that the disease itself is advancing? Has being on this drug made any difference.
 
What I’m wondering
 
So here’s my dilemma. I have continued to decline over my lifetime.
 
And it is concerning to me that I keep paying x number of dollars to stay on this drug all while studies are showing that stopping it now might not hurt me.
 
On the other hand, other studies show that some people who stop it, even those that switch to something else, experience a major rebound exacerbation resulting in further decline from which I cannot recover.
 
And there is no way to tell in advance how I will respond.
 
Ergo, if I stop the drug based on these latest studies, I will never be able to get back to where I am now if I decline further after doing it.
 
I will be meeting with my neurologist next week and having a chat about this. Stay tuned.
 
Things I’ve learned this week
  • Nasturtium leaves, flowers and pods are all edible
  • Lede is a real word, as in “Way to bury the lede, Amy!” Apparently that’s the noun! I’ve been imagining that phrase wrong.
  • Weight-bearing describes a person who is able to carry their own weight with at least one leg
  • Three inputs to your brain for balance: sight, auditory (vestibular), and proprioception, which is the medical term that describes the ability to sense the orientation of your body in your environment
  • Maybe a picky eater is actually only picky about the method by which the food is prepared
  • Inspiration porn example: ‘He asked her to the prom even though she has Down’s syndrome.’ But should be just like it’s not cool if you say ‘He asked her to the prom even though she is Asian.’
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Lightbulb. Skin is an organ

 
I have never really taken care of my skin. I never got acne, just the occasional pimple. I washed my face at least once a day with Phisoderm or Cetaphil, gentle cleansers.
 
I didn’t moisturize regularly, and applied sunscreen only when I planned to spend the day out doing some activity, like skiing or going to the beach. 
 
But this article made me think about my skin as an organ. According to researchers, it is our largest organ, roughly 8 pounds (3.6 kilograms) and 22 square feet (2 square meters).
 
Could it be affecting or partially responsible for my MS? How could it not?
 
Medline
 
I poked around in the National Library of Medicine’s  PubMed* search: [(skin[Text Word]) AND multiple sclerosis[MeSH Terms]], but didn’t see anything relevant. Mind you, I’m not a scientist or expert in medicine. Caveat Emptor! 
 
*PubMed comprises more than 29 million citations for biomedical literature from MEDLINE, life science journals, and online books.
 
 
I did see at lot of discussion about MS and sympathetic skin response (SSR) as diagnostic test. The SSR test measures whether the sympathetic nerves of the skin are working.
 
Apparently in a lot of MSers, the response is absent in one or both limbs, for example. In healthy subjects the response is always there. This is interesting, but not something I think I could fix!
 
Google search
 
Next I tried an internet search. Again I found nothing MS specific, although there are some warnings on various drugs about possible skin cancer. Meaning that some subjects began showing skin cancer during or after the trial.
 
There is no way to tell if the skin cancer was already “on board” before the trial started. Or if the drug made them more sensitive to the sun.
 
 
So there is some involvement there!
 
Ergo
 
Yet again I find interesting (to me) information, but nothing conclusive. Just a vague hypothesis: I think I should be taking care of my skin better.  But who knows what that means?
 
For now, I will just accept prevailing theory until proven otherwise. So I resolve to craft a regular, daily, non-negotiable skin care routine, something like this:
  1. Wash my face once a day, every night. Don’t over wash and risk drying out the skin, causing it to produce more oil.
  2. Shower, wash hair at least once a week. Gross I know, I used to shower daily but it’s hard now. Plus I read this and this
  3. Wash my feet every night before bed, slather with lotion
  4. Slather body lotion daily – moisturize, moisturize, moisturize
  5. Use sunscreen daily or at least before venturing outside anywhere
  6. Ask your GP to include a regular skin cancer check in your annual, or see a dermatologist. Some doctors recommend every year!
  7. Drink lots of water
All this is based on my gut feeling about the right thing to do for me. Your results may vary! 🙂
 
Other stuff
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Genial Gilenya

I am now taking the oral medication Gilenya (fingolimod). It was first synthesized in Japan in 1992 by chemical manipulation of a naturally occurring antibiotic, and finally approved by the FDA in 2010 as “the world’s first oral MS drug“. 
 
I call it genial because compared to giving myself daily shots, it is just a daily pill I swallow. But “genial” by no means suggests benign. This drug is as toxic as everything else I have tried. Incidences of PML occurring in people taking Gilenya do happen.
 
This Method
 
Everyone’s immune system contains lymph nodes, which are tiny glands containing immune cells (AKA white blood cells) called lymphocytes. Lymphocytes are usually helpful, but in MS they get confused and attack the central nervous system (CNS), and permanently damage the myelin sheath.
 
Gilenya activates sensors on your lymph nodes to restrain some white blood cells. That way, these blood cells aren’t released into the bloodstream, where they can attack. (Other lymphocytes are still circulating and available to do their job, watching out for intruders like viruses and bacteria.)
 
It also activates sensors on your heart, which can cause your heart rate to temporarily slow down. So it is recommended that all users be monitored by a medical professional for at least six hours after the first dose.
 
My Experience
 
I have been taking Gilenya since April 2012. This is from an earlier blog post:
 
…I packed my backpack with items to stave off the boredom of sitting around that long: two books I am currently reading [one fiction and one non-fiction], a book of Sudoku puzzles [I’m addicted!], lip balm…
 
We also brought a cooler with yogurt, granola bars, and sandwiches.  [My husband] brought a fingertip pulse oximeter so I could check my pulse regularly on my own.
 
In the end, the whole experience was pretty anti-climactic, which is probably the best-case scenario, really.  I read one book the entire time, and they let us leave before the rush hour started.
 
It was a record heat in SF, which lent the whole outing a surreal feel, and now that I’m onto Day Five, it is like it never happened…
 
It’s now been 6 years and I have tolerated it fine, but it has not made any amazing difference, as I had secretly wished. 
 
Things I’ve Learned
 
Gilenya might increase your risk of skin cancer. It can render a “live” vaccine inert while using it. And it can interact with a multitude of drugs, including vitamins, and herbal products.
 
It is rare but macular edema (a correctable eye condition causing swelling and blurry vision) may occur within the first 3-4 months of starting. It may be confused with an MS exacerbation, so check with your doctor, and consider annual ophthalmology appointments.
 
Finally, I have started to see reports about a “rebound relapse” phenomenon when users go off it. Obviously, once you go off, you should expect that the “door” of all lymph nodes is no longer being guarded so you most likely will resume MS where you left off.
 
But in about 25% of patients, there is an even more aggressive worsening of MS after stopping and these patients “do not return to the level of function that they had before or during treatment“. This worsening most often happens within 12 weeks of stopping. It is definitely something to consider before you start if you think you will want to go off it to get pregnant, for example.
 
Other stuff

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Ack, hepatitis!

In June 2003, 2-1/2 years after I had started Avonex, I developed a liver toxicity to it and was advised to stop it immediately. My medical chart read “elevated liver enzymes/hepatitis”!
 
Apparently, this is a fairly rare occurrence (1-2% of patients), but requires “prompt discontinuation of therapy.” Sigh.
 
The Organ 
 
The liver is described on WebMD as “a large, meaty organ that sits on the right side of the belly. Weighing about 3 pounds, the liver is reddish-brown in color and feels rubbery to the touch.”
 
It goes on to say that “The liver’s main job is to filter the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. As it does so, the liver secretes bile that ends up back in the intestines.”
 
[As an aside, this is an interesting realization to me considering that today there is a lot of focus on the “gut microbiome” and its role in MS.]
 
Liver Toxicity
 
Anyway, the ER doc drew several vials of blood and then ordered me home to await the results. Based on my yellow-ness, he was expecting to have to admit me to the hospital.
 
Luckily the tests came back as “consistent with damage from toxins, probably medications” and no hospitalization was required. But I was directed to stay home from work on short-term disability while my liver recovered.
 
I also had to go for biweekly blood tests for the next two months, then monthly for the rest of a year. 
 
I actually got “get well” flowers from work, and after five weeks returned to my full-time duties, good as new.
 
The Biopsy
 
In Sept. I had to have an out-patient liver biopsy to make sure this was just a drug-induced hepatitis. The ruling was that any interferon –which was almost all of the MS drugs at the time– were now off-limits to me.
 
While doctors assured me that my liver enzyme levels had gone back down to normal, I wondered if I could help keep it that way. So I did a little online research on which foods and supplements might help.
 
I now regularly drink green tea (but studies show coffee may also be prophylactic), eat nuts and other mono-unsaturated fats, and try to limit my carbs and alcohol intake. (For example, I learned that the liver needs 2 weeks alcohol-free to heal.)
 
The liver is arguably your hardest-working organ, takes a lot of abuse and is one of the easiest to damage. Luckily, it is able to regenerate itself better than any other, too, so it is important to take care of it!
 
Other stuff
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Anxious Avonex

In December 2000 my doctor and I decided to start me on Avonex.
 
A younger sibling to Betaseron, Avonex was approved by the FDA in May 1996. It is also an interferon – beta 1A versus beta 1b – and it works in a similar way, attempting to tamp down the inflammation in the brain.
 
But again, even today, the way it works in MS is not known.
 
And as far as the availability of a generic, it is a “biologic” drug which means it is made from human or animal materials (complex biotechnological process) rather than through a chemical manufacturing process.
 
Starting Regular Deliveries
 
Most people who take any of the interferons “will have flu-like symptomsearly in the course of therapy (emphasis mine). So the instructions recommended I take it with something like ibuprofen to reduce the expected fever. 
 
These days it comes in other forms, like a prefilled syringe or even an epi-type pen, but back then each dose came as a kit with a vial of powder, a “diluent” (water), a syringe and needle, plus various small packets of rubbing alcohol and bandages.
 
My regular deliveries also included a small sharp’s container for disposal of used syringes and needles.
 
Learning to Inject Myself
 
Avonex would require that I give myself a shot every week.  So naturally I asked my friend and neighbor to join me at the training session so we both could administer it to me.
 
It was kind of eye-opening that sticking a needle into an orange was so similar to giving myself a shot. I was surprised at how easy it slid into the skin. I don’t know why but I expected some resistance! 
 
The nice thing about Avonex is that it is a weekly injection. So I never had to alternate injection spots.
 
But one problem I had at that time was what to do with the full sharp’s containers. There didn’t seem to be a standard procedure for how to dispose of needles, much less a sharp’s container.
 
Now I notice an instruction on the directions: “Check with your healthcare provider about the right way to throw away the container. There may be local or state laws about how to throw away the used syringes and needles. “
 
My First Shot
 
The first time I did my injection I deliberately did not take it with ibuprofen because I wanted to see how severe the fever would get. Lo and behold, it did.
 
Later I was scolded by a doctor friend of mine. She said that since fever is a warning signal to the body, and since I had been warned to take something with the injection for just that, I should’ve just done it to begin with! I always did after that.
 
But I never could learn to inject myself with ease. Every week I sat holding the shot in my hand above my thigh willing myself to just plunge it in.
 
I Develop Jaundice
 
Then one day I couldn’t keep my breakfast down, vomiting. Next I was walking by the mirror and I noticed that my eyeballs were yellow. So I went to an emergency clinic where I was diagnosed with severe liver toxicity. I was told to stop the Avonex immediately.
 
Unfortunately this meant that any interferons were now off-limits to me. That was most everything else on the market for MS at the time. But not everything.
 
Next up, Copaxone.
 
Other stuff

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Before Betaseron

In 1991 I was 26 and working as a waitress in a local pub.
 
I started to get brief moments of what felt like a buzzing in the back of my head that prefaced a loss of all strength; whatever I was carrying I dropped. Eventually it was happening every ten minutes or so and lasted for about 20 seconds.
 
Unbeknownst to me, the neurologist I had been sent to suspected I had MS. In those days an MSer was usually only given a possible diagnosis on the first visit, then probable based on observation of repeated incidents over time. There wasn’t even a test to definitively diagnose it.
 
The MRI
 
But it just so happened that there was this newfangled machine called a magnetic resonance imaging (or MRI) machine that would work like an x-ray but better. It would show him detailed pictures of what was inside my head. And he wanted me to go get a scan from this machine.
 
It was still so new (and expensive) there was only one in the entire SF bay area. When I got there the tech just told me they would do it twice: once as-is and the second time they would inject me with dye and scan again.
 
I laid in the machine and heard all this banging around me and contemplated what they were seeing and waiting for the injection. But after the first round of scans the tech came back and said they were done and I could go home.
 
The quasi-diagnosis
 
I realized later that they didn’t give me the second scan with the dye because they didn’t need to, that they could see the lesions without it.
 
Anyway, the doctor told me I had probable MS. Even with the confirmation of the MRI, which could show multiple brain lesions in a live person as opposed to autopsy after death, the presence of multiple lesions only mostly confirms it.
 
And at the time there was no treatment, nothing they could do. He told me all he could recommend was that I go home and move to the first floor and prepare for a possible wheelchair future.
 
The new era
 
Then in 1993 just two years after I was diagnosed, the FDA approved the first drug for MS, now known as a disease modifying treatment (DMT): Betaseron. It is produced by Bayer Healthcare Pharmaceuticals but even today they still don’t understand exactly how it works.
 
Researchers do know it is a protein produced naturally by the body in response to viral infections. And that one of the things it does to cells in the nervous system is to direct them to produce less pro-inflammatory and more anti-inflammatory agents.
 
They believe that by reducing inflammation in the brain, we will ease the still unexplained attacks by our own immune system on the myelin sheaths that insulate the fibers that connect our neurons.
 
(phew, I can see I need to back up and do a future post on the nervous system!)
 
What I concluded
 
For this story the point I’m trying to make is that the delivery system of this drug (a sub-cutaneous self injection every other day) seemed too extreme for the 26-year-old me since I had no symptoms. Also it was a brand new drug. I didn’t want to be a guinea pig. I thought it was fine to wait. I was wrong.
 
Next time: Anxious Avonex
 
As always, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
 
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MS or gout

In 1997 I came across a tidbit that I thought was funny. It turns out that MS and gout are mutually exclusive, meaning that if you get one you likely don’t get the other and vice versa.
 
I’d love to know what researchers were looking for when they found that out! But there it is. We are lucky I guess. Although I suppose if I was able to choose I would choose gout. 
 
I understand the pain is excruciating, but it can be treated with medication. Even without treatment you could recover within 1 to 2 weeks.
 
Also it affects men more than women. Interesting because according to NMSS, MS affects at least two to three times more women than men.
 
What Cases It?
 
Gout is caused by an overabundance of uric acid (UA) in the blood.  This may be brought on by genetic factors, or by “what was once characterized as a “rich man’s diet” (high amounts of meat, seafood, alcohol and sweetened drinks)”.
 
It is produced by the body and is the main component of urine in both humans and primates. Normally, it is excreted from the body via the kidneys in the urine. But when UA backs up, causing high levels in the blood, it forms crystals in the joints which results in gout.
 
But these same high UA levels also appear to prevent the development of MS leading to my question: which came first? Does MS prevent us from getting gout? Or does getting gout prevent a person from getting MS? 
 
How Can Knowing This Help Us?
 
Researchers now know that UA acts as a “free radical” scavenger in the body.  For example, as part of basic daily processing, any body produces “highly reactive” molecules that create inflammation and damage nerve fibers. UA acts as an antioxidant and just “mops them up”.
 
It also has been shown in animal models of MS to reduce inflammatory flare-ups in the brain and slow the passage of inflammatory cells into the central nervous system.  It even prevented paralysis in mice. Unfortunately not in humans.
 
Another recent study found that lower UA was associated with disability progression, as well as cognitive decline. 
 
Even more recently, another study found that “UA levels declined during the course of MS, which suggested that the periodic flare-ups of inflammation that occur in MS may ultimately exhaust the body’s antioxidant reserves.”
 
So I assume then that keeping UA levels up is a good thing for MSers as well as supporting my antioxidant levels. I will add the forbidden-for-gout foods to my diet to increase my levels of UA. See list here.
 
Where To Next?
 
 
That leads to another question I have: since animals generally don’t produce UA because they have an enzyme that breaks it down, we have to artificially induce it in them. So doesn’t this enzyme skew the test results? 
 
Also would UA protect you from getting worse if you already had it? Because right now there is very little that can be done for those of us that have transitioned to secondary-progressive (SPMS).
 
Obviously I’m not a scientist. But clearly, I think the relationship between UA and brain inflammation should continue to interest scientists.
 
I pledge to bring it up at my next neurologist appt. at least.
 
Other stuff
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How to Find an MS Doctor

It used to be that we went to the doctor for diagnosis and to set treatment. We relied on them as the expert and, rarely, we would go to another doctor for a second opinion. But we are now in the information age. There is information from everywhere: on the internet, in drug company commercials, through ads in your favorite magazines, even advice offered unsolicited from strangers.
 
In a future post, I will discuss how to find trustworthy online information.
 
Your Primary Care Physician
 
If you have never been sick before, you may not even have a primary care physician. If this is the case, you can begin your search here.
 
“I’d never been very sick before MS,
so doctor shopping was uncomfortable for me.
–recently diagnosed MSer
 
The easiest way to find a neurologist is to get a referral from your primary care physician (PCP). Ideally you should be working with an MS Specialist but your PCP might want you to see someone right away.  Just know that a regular neurologist is a physician that specializes in neurological disorders including not just MS, but other conditions like stroke, Parkinson’s, and ALS. 
 
Whether you are newly diagnosed with MS or have had it for years, having regular contact with an MS specialist should be a priority.  
 
Where to Look
 
  • Consortium of Multiple Sclerosis Centers (CMSC)
    Generally, specialized neurologists at MS centers work primarily in the treatment of MS, have seen many more patients with MS and a much broader variety of symptoms than a general neurologist. To find the nearest MS center to you, visit the CMSC directory

  • Partners in Care
    NMSS’s Partners in MS Care program involves healthcare professionals in neurology, mental health and rehabilitation. To find a Partner in MS Care, use the search tool here to find doctors near you. New partners are regularly added. If you do not find what you are searching for, want personal assistance, or seek additional names of healthcare providers, please contact an MS Navigator

  • An MS Navigator
    The National MS Society’s MS Navigator can help you find a healthcare provider. They can also help you identify benefits you might be entitled to and health insurance coverage.

  • PubMed
    This database offered by the U.S. National Library of Medicine has more than 27 million citations to biomedical research from Medline. You can see which doctors and facilities are publishing MS research and can be considered experts.

  • Patients Like Me
    Online communities like this one have chat rooms, blogs, and survey information. You might ask for recommendations there.
Ask friends and relatives (and maybe people in your support group) for information and suggestions, but ultimately find a doctor you like and works for you.  Physicians should be willing to explain their treatment choice, listen to your concerns, and make adjustments where possible. If you are not feeling listened to, keep looking.
 
When you find one, keep on working with him or her. Build a rapport, tell him or her if you are getting acupuncture, or have a personal trainer or stress coach, for example. Studies have even demonstrated that shared decision making these days leads to better medication regimen adherence!  
 
and they can’t know what we are thinking 
unless we are willing to speak up and
get engaged on our own behalf. ” 
MSer speaking at a recent MS talk
 
Now more then ever there needs to be dialog between doctor and patient. And while healthcare providers should still be guiding things, we should recognize that it takes a team to manage anyone’s healthcare, not just for those of us with MS. 
 
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Jury still out on Ocrevus

The new MS treatment Ocrevus is showing a dramatic reduction in active relapses. But what about the rest of us?

OcrevusLast year my neurologist excitedly told me that a new drug was due to be approved by the FDA in early 2017. So this year, Ocrevus was introduced to the market and I began to read glowing accounts by healthcare providers of how dramatically it cut relapse rates in RRMS, SPMS with active relapse activity, and even PPMS.

The treatment, which depletes a certain type of B-cell, is a close relative of the cancer drug Rituxan (rituximab), but developed from human tissue instead of mouse. Opinions seem to be that it works really well on versions of the disease with active relapses.

What About Me?
That sounds great! I mean, yay, right? But what about SPMSers in the progressive phase of the disease who no longer experience relapses? Like me. It turns out "(w)hether secondary-progressive patients without relapses would benefit from the treatment has not been studied."

Has not been studied?? I hope that instead means there is not yet an immediate way, like relapse rate, by which to gauge positive results in this type of disease. That it will take longer to see changes in disability progression or a slowing of brain shrinkage, for example. I. mean. please.

Safety Issues
Then there are the reports about an odd smattering of breast cancer in the treated group of the clinical trial not replicated in the placebo group which could just be a weird coincidence. Scientists are hoping a larger pool of users will prove it was in fact unrelated.

Also, an MSer taking Ocrevus did recently develop the rare brain infection PML (multifocal leukoencephalopathy). But since he was coming off 3 previous years on Tysabri, one of the MS treatments [along with Gilenya (fingolimod), and Tecfidera (dimethyl fumarate)] linked to PML, the incident was reported as due to Tysabri. Genentech/Roche is currently investigating.

This underscores the necessity of standardizing the advice neurologists give patients on managing a transition to Ocrevus from other treatments. This might require more research as "a switch in treatments was (apparently) not evaluated in the trials."

It sounds to me like still more time and research is needed.

Related links

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Things to do when newly diagnosed

MS is not, in and of itself, a terminal disease. As far as I know it does not kill, although it may cause you to lose your ability to walk, to talk, to feed yourself, even to breathe. But it is not a degeneration of your muscles. It is a degeneration of your nerves.
 
This is what we believe as of today: it’s a neurological disease. I also think we agree that it most often originally manifests in the brain and spinal cord, and sooner or later affects the signals sent to other parts of your body.  
 
There has still not been an actual cause identified, nor is there a cure. Know that you did nothing “wrong” to cause it, and you certainly did not ask for it. And while there are medications on the market today that attempt to slow-down the progression of the disease, they work on everybody differently. It may take some trial-and-error to find the one that is right for you.
 
These are some first things I’d recommend you do when newly diagnosed:
 
  1. Forge a relationship with a doctor. Find a neurologist, ideally an MS specialist, but more importantly someone you can work with over time, someone who listens to you, someone you can reach when you have a question. This may be the doctor who diagnosed you, but maybe not. Remember that no one cares as much about you than you do. Make sure you are working with someone who honors that.

    Consider that you are now creating your own healthcare ”team”: general practitioner, neurologist, physical therapist, ophthalmologist, psychologist, naturopath, dentist, gynecologist, etc.  Maybe print out a DATED list of all members on your “team” and give it to each one to be kept in your file, along with a list of all medications, even vitamins and supplements, that you are currently taking. Keep regular appointments with each and give them updated lists at every visit.

  2. Start prescriptions ASAP. Get on medication as soon as possible. As drastic as it might seem in the beginning, when your first symptom may have already gone away, most of the time M.S. continues to do damage behind the scenes. And when you do begin to show symptoms, it may be to late to reverse any damage.  At this time there is no known way to do that. 

  3. Do something from your bucket list. Do something you’ve been wanting to do, however small, right now, today. For example, I’d wanted to learn to ride a motorcycle for years before I got diagnosed, so I used it as an excuse to start, enrolled in a motorcycle safety course, then bought a used bike, got licensed for it, commuted on it for a number of years, and finally quit to do something else on my list. I could never ride now, so I’m glad I did it when I was still able to. Consider starting your own “bucket list”, things you’d like to have experienced or done before you can no longer do them, or before you die, i.e.”kick the bucket”.

  4. Introduce yourself at a support group.  Contact a local chapter of the National Multiple Sclerosis Society (NMSS) to find one. Take advantage of their free resources while you are there. Also check into other related groups (see list below). In the beginning of this journey, you may find a support group but think you have nothing to offer and besides, everyone there seems so much worse off then you and who wants to be reminded of how bad things could get? But resist that thought.

    Whether you go regularly or just whenever, consider this part of building your team.  It is always helpful to know others on this path, and while your acquaintances may start to refer to you others in their lives who have just been diagnosed or touched in some other way by this disease, do not allow this to be your only contact with other MSers; going to a support group is a sure-fire way to be around groups of others who know what it is like to be living with this.

  5. Examine your spirituality. Decide what you do or do not believe. Enough said.
Finally, if you are so inclined, find a diet or other eating plan that you can stick with.  I started off in a flurry, determined to make any dietary changes that made sense to me. After a year when I wasn’t seeing any evidence it was helping (how, exactly?), but I also didn’t have another “flare up” (and it never occurred to me to connect the two!), I quit the diet, joking that “A life without cheese is no life at all.”
 
Would it have made any difference to my situation now? Who knows. There has not been any scientific research to prove definitively that diet makes a difference. But if I could do it over again, I’d stay on the side of “restricted”, liberally allowing myself to “cheat” rather than giving it up entirely.  If you are interested in diet and MS, the “Swank” diet seems to be the authority: originally published in 1972, it’s been revised and updated incorporating new research ever since. (The Multiple Sclerosis Diet Book Swank, Roy.)
 
Be gentle with yourself.  Know that this will not be a sprint but a marathon.  
 
Related stuff
  • MSAA MS Association of America, a U.S. nonprofit organization founded in 1970.
  • NMSS National MS Society, a U.S. nonprofit founded in 1946.
  • NARCOMS North American Research Committee on MS, global registry for MS research, established in 1993.
  • PatientsLikeMe.com A health information sharing website for patients, launched in 2011
  • MSFriends NMSS program for peer-to-peer phone support
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