- 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.’
Wash my face once a day, every night. Don’t over wash and risk drying out the skin, causing it to produce more oil.
Wash my feet every night before bed, slather with lotion
Slather body lotion daily – moisturize, moisturize, moisturize
Use sunscreen daily or at least before venturing outside anywhere
Ask your GP to include a regular skin cancer check in your annual, or see a dermatologist. Some doctors recommend every year!
Drink lots of water
- 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.
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.
The new MS treatment Ocrevus is showing a dramatic reduction in active relapses. But what about the rest of us?
Last 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.
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.
- 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.
- 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.
- 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”.
- 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.
- Examine your spirituality. Decide what you do or do not believe. Enough said.
- 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