Welcome to Day 1's question! Thank you for all the interest in this focus group, we look forward to hearing form you.
Today’s main question is about how your treatment and care decisions are currently made?
- What is the role of different members of your care team and family?
- What resources do you currently use to make treatment decisions?
- What holistic or wellness and support services do you use?
Also, if you’re happy to, it would be great if you could introduce yourself...let us know your name, age, how long you’ve been affected by MS, what kind of specialist you see, etc.
Written by
HelenHU
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Hi l’m Jimeka, I am 63 years young, I was dx in October 2010, with PPMS. I live in the U.K., so I don’t know if this focus group belongs to me but I thought I would get the ball rolling. There is no treatment available in the U.K. on the NHS for me, so every day is a new day. I look forward to everyone’s replies blessings Jimeka 🦋
Thanks, my name is Pat, 60years old. I had cervical fusion in 2010
Before this I had progressive pain down left side to foot. Went mostly to sports doc, was told PT and pain management. After surgery the left side continue. Move to Florida and neurologist wanted more surgery. Went to Cleveland Clinic and found a doctor who told me i was misguided, nothing new on MRI, and after all test it was primary Ms. After over fifteen years of searching I research and try to find pain meds and Ms support group. Because of insurance and distance, hard sit in car I found new neurologist. Just last week, abrupt,lack of compassion and read Cleveland doc notes that said it may not be Ms. I am still upset that primary is on my report. Ideal to have team and holistic approach. Not my experience with the health system. On disability and working on pain with medical marijuana and cbd. Expense is not easy. Thanks
I too was originally diagnosed with lumbar spine problems (painful spasms and numbness in feet/legs) until an affirmative diagnosis of MS. In all, I spend 18 years spending precious time and resources on finding an answer. I will be grateful when they (whoever they are) develop a protocol for definitive diagnosis.
Hi I'm Lee. I'm 54 years old and was officially diagnosed in 2009. I actually had MS symptoms since the 90's but was diagnosed with fibromyalgia. I'm now told I have spms with very few relapses. I'm now on Ocrevus (started in dec 2018) after being on three other meds (Copaxone, Avonex, Tecfidera). My final decisions for meds are always mine after suggestion from my MS Specialist. My sister is very helpful with helping me make my choice. We read manufacturers website, MSAA and other official MS websites. I'm a vegetarian and I take supplements to maintain healthy living.
Hi, I'm Downrigger,I'm 65 Ouch, I just had a birthday and that is the first time I had to write my age. Oddly enough I know Jimeka (currently the next poster) and have had ppms for 12 years. I chose not to treat my MS, except for symptoms. My wife and I make decisions on my MS together with my nero. I have not been offered any treatment as I expect to die before my symptoms become unbearable. (No, I have not received any fatal diagnosis}. I have spasticity, which is a real distraction as my finger often twitches on the mouse. I also have some private symptoms that I prefer not to discuss in a public forum.
What kind of supplements do you take? Did you listen to Pam Bartha and have you heard of Candida or test for it. Getting a pap test and will ask. Primary was not sure. Thanks
Hi I'm Gill also from the UK. I'm 62, diagnosed in about 2003 -took a long time. First diagnosis was MS then changed to Devic's Syndrome (MNO.) Given azathioprine as an immunosuppressant for 5 years. Stopped suddenly (mistake) as it can cause cancer/heart issues(?) This triggered big relapse. Diagnosis reverted to MS and that's where I've been, relapsing and deteriorating to now. I have no involvement with treatments, holistic or otherwise as there is nothing and I just manage as best I can. I use my GP for recurring UTI help.
As my family never asks about my health, I make all my decisions, including healthcare. I was diagnosed at 70 with RRMS, 8 years ago. At that time I was told there were no medications recommended for those in my age group. Except for ON, I have been without relapses, though I constantly lose a little ground. I take several antioxidant supplements, along with B-12 injections monthly and Vitamin D daily. My healthcare services are provided by a number of specialists at a teaching hospital in Virginia which purports to have a MS clinic. My evaluation of their department of neurology is not positive, but there are few MS specialists in the state so I am not well-motivated to find a more interested clinician. Rereading this I hear the anger I express.In general, health care providers are dismissive when I try to communicate my struggles. I am currently still dealing with low level pain and healing from a badly broken ankle in September last year. If my balance were better, I might not have fallen and required surgical repair with many screws and a plate. I want to assure you that most of the time I am not angry...but you asked for my honest response and the anger is there, mostly unexpressed. I live a solitary life on four acres with 11 raised beds for vegetable gardening, a flock of 24 hens, two largish dogs, a multitude of wild creatures and beauty everywhere my eyes alight. I bake my own sourdough bread, make yogurt from A-2 raw milk, brew kombucha and share the extra eggs with neighbors and the local food pantry. I am blessed with good neighbors and the friends I have made on this forum.
I enjoyed reading your post, I think in all honesty we are all a bit angry. I am not thrilled with my Neurologist either. I feel like he is a machine just pushing me along the assembly line. I loved reading about your gardens! I too, take many supplements and try to eat healthy. I told my daughter the other day while is was in the midst of a terrible flare that this disease is an awful way to live. I am trying to do it with as much grace as I can. But just some days, I don't know if I should cry or scream! Take care, enjoy your little piece of heaven today!
The welcome mat is always out around here. First weekend I was here a black bear ambled through, and last summer he was an occasional visitor, dining at the bird feeders, so evidently this is a place familiar to bears.
I was thinking the exact same thing !!! Goat girl your place sounds like the perfect wonderful place to live ! I love animals , the outdoors , so happy that you have such a fantastic place to call Home !!
Thank you for sharing your gardens and I will admit I am wishing you were my neighbor !!! All animals , gardening , country fresh air are favorites of mine !! Enjoy your little piece of heaven !!
Your kind words mean much to me. Yesterday was cool and wonderful, so I could spend afternoon time pulling weeds for the hens to eat. Today, at 2:30 it is 82 with rising humidity which means it is too warm for me to be in the sun. But, despite the reality that MS makes me adapt my spring/summer schedule to each day's weather, I am convinced that being able to grow my own vegetables, plant fruit trees and berries for future jams and preserves is what keeps me going. Since I was a very little girl, I have needed to be out of doors as much as possible. If you were nearby, I'd ask you to drop by, sit on the shady porch with me ... we'd lean back in big wicker chairs, turn on the overhead fan, sip iced tea and chat as we watched the green leaves move, listen to the hens discuss their discoveries or quarrel over some tasty unearthed morsel, and savor the day.
I would for sure enjoy sitting with you, drinking iced tea and chatting !! I have had chickens myself and they are such little characters ...
The outdoors is mandatory in our well being and that of all our critters !! The heat is the challenge we deal with every year and this year I will be trying a cooling vest . Have you ever tried one ? I am hoping it will make it possible to do more outside for a longer time . This has been so enjoyable visiting with you today . 🦋🐝🐥🐰🦊🐮🐱🐶🐴🐞💞
I have a cooling vest hanging in the closet, but it isn't effective in Virginia's hot and humid summers. If you don't have one, I would be happy to send you mine. If you didn't like it you could pass it on to someone else. It's a Cool Max from Polar Products, Inc. I tried to PM you but the message box kept telling me there was no match for your name. Perhaps it was a typing glitch that I overlooked.
I have not been here long enough to be familiar with all there is here to communicate ! Did you try to PM me on this site ? I don't know anything about that feature .
Go to the top of the page, look for the Chat icon and select. Open it, type in the user name of the person, go down to message, type, click send, and voila, done!
At the top of the page, to the right of Home, My Hub, is Chat with two bubbles. At least on my computer; perhaps it is different if you are using a phone app. To use chat, type in user name (eg goatgal) and go down to message and write. I hope this is helpful.
Yup. The first tentative diagnosis was spina bifida occulta but when MRI's blood work and LP were done, MS was and a spinal problem were diagnosed. My spinal column is closed but the spinal column is tethered. My sister has the same defect, but more serious; hers has caused scoliosis. Mine just causes leg problems (burning, aching, weakness) and lower back pain when I have to stand for long periods of time. If I can keep moving, I am pretty much okay. I was a teacher; by the end of a school day I was always in pain from standing because I didn't want to teach sitting down.
My name is Jeff Zaeske and I'm 53 years old and diagnosed with MS 8 years ago even though I probably had it for along time before that. My primary effects of the MS is extreme vertigo due to a large amount of damage to my vestibular nerve which controls all your balance functions.
We have agreed between my primary doc and neurologist. If I'm running a fever see my primary if not see my neurologist.
I have been on most DMT'S and was averaging 3 exacerbations a year being treated with steroids.
For the last year I have been on Ocrevus with only marginal enlarging of existing lesions based on recent MRI'S. But have now averaged 5 infections over that year.
Not really accepting the fact that I can't do what I used to do I don't rely on my family all that much but since I can no longer take care of the house or property I have been relying on contractors to complete things that I have started and can't finish to complete.
My wife and myself have agreed we need to downsize to a condo. So the house is being prepared for sale.
Sandy Zwierlein. I have used Copaxone, Aubagio aand I just had my first Ocrevus infusion. I was diagnosed in 1992 at the age of 33. I am 53 now. The mother of 5 and grandma to 9. My dr and I discuss my treatments. I do research on my own. We talk to all people concerned. My husband is my main helper and I see a neurologist that is a ms specialist. Also my pcp a np. I use therapudic riding for my physical therapy. I will be getting another horse of my own to replace the ones that I had.
Hi my name is Lynn I’m 62 years old, I was Dx in 94 with RR ms. My neurologist at this time put me on Avonex which I had continued to use, he left and I was assigned to another neurologist at the Cleveland Clinic who twice suggested I try something new so I tried copaxzon, and then tecifidera miss-spelled both but eventually went back to Avonex since it seemed to help me the best although hated injections and flu like symptoms afterwards I was on it for around 15+ years and I stopped taking it for several months and my ms came back with a lot of pain And numbness in my lower legs especially my left foot, so I made an appointment with my neurologist and she told me about this wonderful new drug that you only get infusions twice a year went real fast over side effects so I filled out paperwork for it not really paying much attention to the side effects because she wasn’t really going over them real good with me. I had a mri previous to that appointment but she really didn’t tell me how I progressed. She also told me in order to get this new drug ocrevus that she had to tell my insurance company that the other 3 meds were not working which in fact wasn’t true because Avonex did work while I used it. i know this is long but I really wish I could of just continued with Avonex because I’m getting urinary tract infections and I see my pcp doctor today at 11:00. I had some Macrobid that a urologist have given me refills on a year ago so I’ve been taking them but I don’t think there cutting it with my infection, I also read a gentleman saying he had to be hospitalized because he is on Ocrevus and had to get a high powered antibiotic IV for his infection. So this is where I stand. I was hoping my neurologist would of made a more informed treatment decision for me.
OKgal here. I’m early 50’s and have been officially diagnosed for 5 years, but affected for 25 years. My MS medical care is provided by my neurologist, whose practice is not focused solely on MS, yet has a higher MS patient load. Other health care team physicians are PCP, Gynecologist, Dermatologist. My current and only DMT is Copaxone 40. I have been on supplemental therapies for vertigo and walking, but currently not on anything else.
- What is the role of different members of your care team and family?
My MS care is a shared decision between my neurologist and me, with the final choice made by me. My immediate family chose to not be involved in this journey.
- What resources do you currently use to make treatment decisions?
A variety of credible websites are used for research for treatment; NMSS, MSAA, NIH, pharmaceutical companies published literature, etc. The most important resource is the neurologist, simply due to the fact I can’t receive the treatment without the prescription.
- What holistic or wellness and support services do you use?
I have a YMCA membership and go 5 times a week to participate in therapy classes. A few are MS specific. Others are general therapy, and the remaining are merely good for my health.
Hi I had my first exerbation in 1980. Did not get diagnosed until 2004. Did get false diagnosed with many things for years. I decide my treatment by listening to my Doctor, reading all info I can find, and discussing with my husband who is very involved. I then re-discuss with my Dr. I make a decision on what we feel is best fof me. No decision has a guarantee. I have yoga 3 days a week. Helps body and mind. I also use an elliptical machine I am up to 7 mi.
Hi there, my name is Michelle and I 58 years old. When I entered my early 30's, I started having symptoms though we did not at the time it was R/R MS. Many tests and results, some positive, some negative and some that fell under "what the heck." It took many years for a doctor to finally say I had MS. Living in NY, I had access to an MRI machine, which was mobile, slow and very loud compared to now. There were no treatments except steroids and for some of the symptoms. It was a roller coaster ride with many down tracks.
Since my diagnosis, I have seen a variety of neurologists due to moving across the country. Today, I see an MS Specialist whom I really like in AZ where I live. Been on Copaxone and Rebif in the past which my skin rebelled against and did not help. I was heading into Secondary. Been over 10 years since starting Gilenya and I cannot say how much it has helped. Almost had to come off a few times due to side effects. In addition to medication, I of course have other meds for symptom management, as well as switched to a vegetarian diet which is healthy. I also work out regularly. which helps me to strengthen, keeps my mobile, and is great for my emotional health. Working with a trainer, part of my regimine is to work on over muscle strength as well as core and balance. Found an old brain can make new pathways. Today I also run and win at 5K's. It is also helpful to keep your weight down.
My name is Carole, I am 56, and was diagnosed in 2006 with RRMS, but it was changed to PPMS. I was experiencing 'ms' symptoms as far back as 1996/1997 so it took about 10 years before my diagnosis. The early symptoms were Lhermitte's sign, pins and needles in all my extremities, left leg weakness, and a few vision problems. My husband is my caregiver, and together, we make decisions involving my health. Currently, my medical team is my PCP, my neurologist, my dentist, and my eye doctor. When warranted by my PCP and my neuro, other specialists can be on my team as they are available. I am on currently on Ocrevus. I take numerous supplements. I also take medication for spasticity and migraines. I avoid gluten due to a sensitivity, am lactose intolerant, and I am trying to limit sugar. Good diet, exercise, and good attitude is key for me.
I am bodega. "I am older than dirt but not compost yet" as the women on my mother's side say. This year in October I will be 80 and I have had an indolent form of RRMS since my first vision of unequal horizons experience when I was 27. I will answer your questions of roles of people, resources currently used, wellness or support service and medical history as it relates to MS and to me.
Through the years using "work arounds" (i.e. finding other brain and nerve/muscle pathways to take the place of what I was losing or had lost) I have been able to continue being a mother, a professional and helpmeet, long distance runner and artist. I think major problems with coordination and perception occured only every 5-7 years. My husband and I always found workarounds of a sort.
Nobody in the MS world seems interested in "work arounds"--which is simply finding finding alternate pathways to achieve a physical capacity recently lost. It does demand persistence and creativity, I admit.
In 2005 I had a physical collapse and consequently had my first ever MRI which showed periventricular and subcortical white matter plaques, scattered. Radiologist and doctors said I was 1) too old to have MS but I probably had the onset of 2) dementia or 3) Ischemic Vascular Disease.
Had they just asked a few questions about what I did for a living and type of literature I read, the papers I wrote and had published, they would have ignored the dementia and IVD. [ I have found doctors in and out of the VA do not ask those questions of women. Not having that information on current performance is a severe lack of information for them. They could make better decisions about all of us with better and more precise functionality questions.]
My enlistment and subsequent aviations electronics training the Navy at 18 has proven to to be a boon for my health care, but not helpful in terms of this "too old to have mental and physical problem identified as possible MS". This attitude seems to be pervasive in the MD community.
One VA neurologist disagreed with the prior radiological and neurological exams. He wanted me to try a DMT (disease modifying treatment). I, being a PhD Immunologist (immunopathology) disagreed with him as I found every DMT (using sources like PubMed and the world of the internet) to have horrific side effects. I continued as I had before the collapse, using work-arounds I kept teaching pathology until the fatigue I had been battling for probably 10-15 years finally ended all professional work including home health.
Finally a this past ;year I became unable to reliably walk and I was falling regularly, my reflexes so weak and my coordination was so poor the VA neurologist could not longer ignore it. The same neurologist in the VA system who wanted me to try the DMTs to help me in 2013 offered a choice. As I still found the DMTs still to have very adverse side effects, he suggested I try Ampyra (dalfampridine, a pill), a potassium channel blocker, on the spinal cord that had a variable ability to help people with MS. Ampyra has a 30% ability to increase walking speed in a small population of people trying Ampyra. (I am surprised it is still on the market actually). Within an hour taking that white bill I could literally walk. It was like a miracle. It is per os and bid.
As far as help is concerned, a friend of mine is now living with me. He has strength and coordination and drives when I can't. Unfortunately he does not help with bills as he has Aspergers and OCD all of which adds monetary and physical problems to my life. I have no family help --they live far away and are involved with their own lives. This town is 100 miles from Pittsburgh, has a population of maybe 200 (mostly elderly) and has 3 Class C hospitals within 35 miles. We have no real support services either locally or from the bigger cities. The closest VA is in Altoona 45 miles away and does not have a full complement of specialists..not even neurologists. I would move if I could. I do not have the finances to do that.
The VA In Pittsburgh has all the specialists I need and does, for the most part, pay all my medical bills for which I am grateful every day. However, they dispense nothing I am aware of for MS pain (that is a whole other issue and an important one) ...it's like we don't have "pain" and only "spasms", so I use CBD oil, 1000 mg per dropper and that helps. But NOT with vertebral pain (Lidocaine Patches (700 mg/24 hours) do help and only 2 patches/24 hrs.
Along with the MS I have RA and use Voltaren (diclofenac Na topical gel) I can usually get to sleep if I have the Lidocaine patches on areas associated with MS and the Voltaren on the big joints (wrist and ankle always, sometimes knees and shoulders). But nothing helps the spasms, and nothing helps long bone pain, and nothing helps diffuse pain of no particular origin...I just don't know for sure what causes that.
Hi I’m Terri, I’m 63 from Massachusetts. I started having symptoms in 1993 but didn’t get a diagnosis until 2005 when I decided to go to Brigham and Womens MS Center. I have tried all the injectables that were available back then. I had good response with Avonex. It wasn’t until my last visit that my MS Specialist asked me if I wanted to stop using it as new studies show that being of an older woman that my immune system has slowed down. I did stop and my doctor is watching me very carefully. So far so good. I’ll know more next month when I have a MRI. I trust my doctor and talked it over with my husband who has been my support all these years. I presently keep myself active, doing yoga, walking and some weight training. It has been a long road to get some stamina to do these things. I also follow a vegan diet and have lost 120lbs. Never will that return. I like to listen to podcasts when the are available on line and I also have a MS nurse that calls every couple of months. That is provided through my insurance. Will look forward to other replies. Thanks Terri
Hi, juliew19673 here, I'm 53 have been DXED since 51518 so not quite a year, was told it looks to be PPMS. I think I have been battling this for 5 years if not decades. I'm on Ocrevus and I think it's helped. As for care, it's just me and my Neurologist and this lovely site. I take Ritalin and Baclofen along w/Vitamin D and B. Zoloft for depression. CBD pills (both with and without THC), when needed. And I eat alot of Kale.
I'm still working as my boss has been great with allowing me time off/leaving early when necessary.
I was diagnosed in 2009. I'm 56. Had optic nueritus 6 six before that said it was a complicated migraine. Saw lots of eye specialist and eye tests. After that got sick a lot and lost three jobs from being sick. A year and half before diagnosis had tingling numbness in legs arms torso. The French docs zinging down my spine. In lots of pain. Just lived with it all. Primary doctor was a joke in helping me. Then a got paralized. Started dragging right leg. Was referred to neurologist. He was excellent. Went on 9 high dose intervenetious steroids treatments, pain medication then started Copaone shots daily for 6 years. More leisions found in brain. Needed new treatment. Allergic to Aubigio now taking Rebif. Works well but went through hell first year with symptoms. But I'm tough. Have a great MS neurologist. I have had lumbar test very painful lots of other tests for MS. Finally was awarded disability after 6 years. Had thyroid cancer surgery to take that out 2-14-2011. Took at least a year to heal but survived that too. I have had and have many MS symptoms but I'm tough. My family of a husband and 3 children have helped as much as they can but it's very hard on them! Changed them. I have much to say about losing work qualifying for unemployment losing my health insurance abuse etc but not today.
My friends and relatives mostly little by little stopped supporting me or coming around. I'm truly Blessed by God with all that I've went through and feel it! I have been reading the posts on this forum since the beginning. This MS family is truly a blessing to me. Thank YOU ALL
I'm Erin, and I'm 59-1/2. I was diagnosed with RRMS 9/16, but had symptoms for years following a neurological event over 20 years ago. My neurologist is not a specialist in MS. She makes suggestions and leaves the decision up to me, at least so far. She recently suspected that I am progressing and wants to switch me from Copaxone to Ocrevus, so we are currently appealing the insurance company's denial.
My family are supportive but not directly involved in treatment decisions. I do take Alpha Lipoic Acid, taurine, N-acetylcysteine, Vitamin D, and a B-complex as advised by my PCP, who is a nurse practitioner. She researches a great deal for supportive therapies for me, and I read quite a lot, mainly studies online, about treatment options and supportive therapies for MS. The Health Unlocked MSAA forum is very helpful with information and by offering a place where I can ask questions of those who are also dealing with MS.
Today’s main question is about how your treatment and care decisions are currently made?
- What is the role of different members of your care team and family?
My "care team" is my doctor and his NP. I see the NP more than the doctor. They just make sure all is going well and test to make sure there an no bad terns. My family doesn't do anything with my MS. Perhaps if I'm feeling weaker they let me lay around without complaining...
- What resources do you currently use to make treatment decisions?
I rely on my doctors to guide me. I read about other things but so far I am happy with my current treatment.
- What holistic or wellness and support services do you use?
None.
- Also, if you’re happy to, it would be great if you could introduce yourself...let us know your name, age, how long you’ve been affected by MS, what kind of specialist you see, etc.
Jane V.
59 (60 mid May)
I've probably had it for many, many years but was diagnosed 9/9/2014.
Hello my name is Norman, I am 67 and work full time for myself. I was diagnosed in 2008 with RRMS. I have avoided Doctors all my life (preexisting conditions) because health care insurance in the US sucks and I needed insurance to cover my Wife and Kids. I have had the same symptoms most of my life, just went to the Doctor because I thought I had slipped a disc while gardening (Kids had grown up and my Wife had good insurance from the State by then). First Neurologist put me on steroids. The second Neurologist put me on Copaxone. I was on Copaxone for 10 years. I have since stopped taking any DMT, when I was told I was SPMS. I make my own decisions about how I take care of myself, Aspirin, home grown Cannabis, a few pain killers the Doctor gave me (I am trying to get myself off of). I don't believe that Doctors know what they are doing with MS. I have discussed my choices with my Wife and Kids. We have made up all the legal papers in case things go South. I hope this answers your questions.
My treatment and care decisions are currently made by myself. I listen to the advice and input of my neirological team but the final decisions are mine exclusively.
The role of different members of your care team is to monitor my disease progression through testing and exchange of information and to make recommendations based pn that information My family members step in to help me complete taskes that i cannot finish on my own; to share their observations of changes in my health and to be my main support system.
We currently use mris, blood work, exchange of informatoon by conversations and symptom obsevation to make treatment decisions?
The holistic treatments i utilize are massage, stretching, swimming and mecitation. The wellness and support services i use are counseling, mindfulness techniques as well as a home health aid, nurse manager and case manager.
My name is Laurie, my ageis 49 and i have been affected by MS since my early 30's. I see a neurplogical team of 3 , i see a massage therapist, a pain managment osteopath. O have a case manager from my insurance as well as a nurse manager in conjunctions with home health care.
Hey all, my name is Steve, 57 yr old diagnosed in 2 QTR of 1998 with RRMS which has since progressed to SPMS. Living in the sunshine state of Fl, the disabling effects of MS have been with me since March 26, 1980, however it took 18 years to diagnose. Diagnosis was difficult because many symptoms were spasms in my low back, tingling/numbness legs, misdiagnosed as sciatica problems (it was only derived from MS spasticity). All MRI's studied brain, not the cervical or thoracic spine where it all began. Finally, in 1998 (I think, maybe 97) CSF proteins were checked and they were elevated. 2006 brought on assistive devices for walking and by 2016 SPMS set-in for the long haul. I have been on the ABC's-R, IVIg, and Tysabri. Current meds are Baclofen (prolly going to Baclofen pump as is maxed out orally), Tizanadine, Ampyra, Lyrica, B-12, D, Biotin and Ocrevus.
Most decisions of care are made by myself taking into consideration all the information from Dr's, interested 3rd parties, and non-traditional sources.
I utilize all information available to me in an effort to make the most informed decision possible. I have embraced a KETO/Intermittent fasting for 3 years, PT/OT, assistive technologies, and the Bemer.
Hi, DX 2005. After neuro suggests, I research DMTs online, read package inserts, medical trial results, and review opinions of notable MS neurologists. I discuss with husband and grown daughter and then pose remaining concerns to my neurologist.
My husband attends and takes notes at Dr visits.
I take supplements recommend by the NP and pcp. I take CBD oil, try to eat healthy, and I use a hiking stick to walk daily, if possible.
hi I'm Ellen. 79+1/2. Have general neurologist, physiatrist, primary, urologist, ophthamologist who all contribute to helping me stay on the straight and ?? narrow. first dx around 50 yrs old. latest dx has been SPMS. on Copaxone still. waiting for studies on results of stopping to go fully off it. Have just started Lipoic Acid 400 mgs twice daily. Am on 80mg of Baclofen and Tizanidine daily. and its not as effective for always increasing left sided spasms and pain as it was for several years. now considering CBD oil. but of course concerned with combined effects. increasing arthritic spinal discomfort adding to the fun. . Until these past few mos I was doing water exercises 3x week. extremely helpful and if I am able I will return to it. Wonderfully supportive children and grandchildren but so far they leave care decisions to me, though they try to patiently or maybe just thoughtfully monitor what's happening. AND this is probably the most I have typed in years.
Hi my name is Pia and I’m 54 years old. I was dx’d in 1996 with rrms. I’ve been on many different ms medications and I did best on Avonex. When Gilenya went on the market my neurologist strongly recommended that I go on it and ditch the injectables. While on Gilenya my condition worsened and my ms changed to secondary progressive. Now I’m on Ocrevus and I’m quite pleased. I usually decide what medications and treatment plan I use along with the guidance of my neurologist who is an ms specialist. My husband use to help in my decision making but a month ago he filled for divorce after 25 years of marriage. Now I’ll lose my great insurance through his job and my doctor too. I will be getting Medicare once the divorce is final but I don’t know if I’ll be able to continue with Ocrevus. I exercise and go to physical therapy. I’m thinking of changing my diet to the Wahl’s diet. I take vitamin D3 and Magnesium. And I’m on Baclofen and Lexapro.
My name is Kenny I live in Houston Texas my first treatment for MS was Copaxone used it for ten years I now use Aubagio. I was informed in 2007 I had the disease I was 52 years old now I am 65. I hope by being here I can learn about any new research and medicine for the disease we fight. I go to a strength gym three days a week, It is for people living all types of disabilities nice to speak to other people with disabilities I consider the disease a challenge in my life I try to handle it the best way I can. Fatigue is the worse part of having MS with the hot summer we have if I have to do something it is in the morning hours. I am married my wife is my caregiver when I need help, I read all l can about MS on web sites and listen to others with MS. trying to explain what MS is and how it affects you is hard to they listen but do not understand.
Hi, I’m Sully. I’m almost 57, but was not officially diagnosed with MS until I was 54. Based on my history of symptoms and MRIs/spinal tap, I’ve likely had MS for over 20 years. I see a general neurologist or his PA every 8-12 months. I’d love to see an MS Specialist, but there are none in my health insurance network.
After lots of insurance appeals, I was approved for and started Tysabri infusions six months ago. I also began taking Ampyra this year to improve my walking speed. I don’t take any other prescription medicines, although I do take Vitamin D and magnesium supplements on a daily basis. I don’t follow any specific MS diet, although I (mostly) stay away from sugar, dairy and gluten. And, although I’m not very mobile anymore, I exercise and keep moving as much as possible every day!
Hi I'm NeeC, and I am 62 years young, I was dx in early 2008 with RRMS and live in PA. Currently, I am almost approaching 3 years infusion inpatient free! That's a true blessing from God when I can remember my neuro leaving his kids baseball game on a Saturday; yeah that was hospitalization number 10. The first few years were horrible because I worked in a demanding social service organization as a social worker. After my resignation in 2011, wow did my health change; good days "New York House Music to Zumba and Planet Fitness. But the bad days, Lifetime and my pillow. Naproxen is not working for pain as much as it used to and I've been on Copaxone since dx. Just informed by my dentist I have new cavities that I didn't have before tx. I am not happy with my Copaxone Therapy anymore because of the astronomical rising cost and side effects. I also have low blood pressure so my doctors are a little concerned about trying other medications, so I am eating very healthy and continuing to load - up on Vitamin D. Dr. Ian K. Smith just published a book: "Clean and Lean." I wanna try holistic exclusively; but afraid, really afraid but do I want all of my straight pulled out, hair at times thinning?
Hi. I'm Dorothy. I am 73 and although I wasn't diagnosed until 1998, I know I've had MS since 1981, right after my one and only child was born. My eye was crossed and I was seeing double for about ten days. Then this initial exacerbation went away. I had other relapses over the years, so I initially had RRMS, but as of 12 years ago, I have SPMS and have no more relapses. I used to use Avonex for years until I just couldn't do intramuscular injections any longer. So I switched to Rebif. Although I use a rollator and at times a scooter, I feel pretty stable. And I feel lucky to have no pain. I sometimes have spasms in my foot and leg when I lie down to sleep. But a glass of wine or some cannabis fixes that. I live in California where cannabis is legal. My adult son lives with me and is very helpful. Occasionally I lose my balance and fall. They used to be "elegant" falls, but my last two were not pretty. So I'm currently going to physical therapy twice a week on the suggestion of my doctor. She says strength training will help with my balance. One of my pleasures is going to my MS yoga class every Sunday morning. Afterward we all go to lunch together. I have known most of these people for many years. We consider each other friends even outside of yoga and yoga-lunch.
- What is the role of different members of your care team and family?
My family is only my son. He lives about half an hour away but is married and they recently adopted a baby, who is now a year old but still keeping them quite busy. They do visit me a few times a year though. I don't expect that they will be of much help to me if/when I need it because they keep pretty busy.
The care team consists of my primary care doctor and I could throw in the neuro too. I had to change both of these people in the last couple of years and so don't know how well they'll work out or whether they'll be a team. There's also an ophthalmologist --I've been going to him for 10 years now and that situation seems stable.
- What resources do you currently use to make treatment decisions?
The Internet and advice from doctors whose opinion I respect.
- What holistic or wellness and support services do you use?
I'm not sure I use any. Maybe taking 5,000IU of vitamin D3 is in this category. Otherwise I don't seem to use any.
Also, if you’re happy to, it would be great if you could introduce yourself...let us know your name, age, how long you’ve been affected by MS, what kind of specialist you see, etc.
I'm 78, my name is Joan, and I was diagnosed 39 years ago. (I also have Type 2 diabetes, osteoporosis, and osteoarthritis.) I see a regular neuro, not an MS specialist. There are two MS clinics in my area but I can't go to either of them. One doesn't take Medicare/Medicaid patients, and the other doesn't take new patients. This is OK with me, though, because both are at locations that would be a fairly long trip for me.
I do not use any holistic or wellness approach. My treatment decisions are strictly made by listening to the multiple sclerosis specialist and myself. He currently has me on Copaxone 40mg and Ivig 30gr.I am 53yrs.of age and have been diagnosed approximately 16yrs. ago and have primary progressive MS.
I make my own decisions based upon availability . My Disease Modifying Therapy was based on availability and nothing else, I continue on this path and limit my supplements to general health effects. I make my decisions for myself and my willingness to continue the treatment on a very long term basis. Resources, I believe I used the drug companies website, everything based o0n willingness to take the medicine longterm and availability.
Hi! I'm Sue, 72, from Arizona. I was DX when I was 40 and my right eyeball stayed on the outside of my eye causing double vision for about 6 weeks I was on Betaseron and Avonex for several years. I have not been on any DMT for about 15 years, when a renown MS Specialist told me I had moved into SP and although he had never told a patient before to go off their DMT, my MS was mild and was now SP and although it would not hurt me, it would not help. I am currently between neurologists and my husband and my PCP help me make my MS decisions. I read anything I can about MS and keep current on the disease. I try to stay strong and ride my adult trike, walk, lift weights and swim laps.
Hi I'm Mary (kycmary) I just turned 66, I was Dx RRMS in March of 1994 been 25 yrs now. I am now on Ocrevus I get my next infusion in June. I have been on so many different DMTs I need to think about them for a few minutes, Avonex, Copaxon. Rebif, Tysabri, Gilenya Tysabri was off & on for several years as was Copaxon. Copaxon was used as a wash out between Tysabri & some of the other DMTs. Some times I think I'm having brain burbs trying to remember some of the things I've been on. I am married to my care giver over 39 yrs now. we discuss all my medical issues between us & the Dr. concerned the final decision is mine.
Hi I'm Mark, I'm 60, Dx RRMS on my Bday in 1998 at 39yrs. I ran my own companies, shopped, bought, and paid for all the employees health insurance, best money could buy, almost. Had multiple top neurologists specializing in M.S. Did all the DMT's of the earlier years, for many years. After developing, and living with flue like symptoms including fever, shakes, soreness....non-stop for 2-1/2yrs, finally I was directed to stop, because according to the docs, it wasn't helping me anyways. So I stopped all DMT's, and as a result, lots and lots of other drugs, for side effects, and ... Then gradually went deep into brain fog. Couldn't follow any tv, could not read...
Found the brain fog triggered by food. Any food. Not carbs, not protein. A single egg, nothing else, was enough to trigger it. So I stopped eating as long as I could each day (evening), and went into that "comatose state" Needed nutrition I thought, eating 1 meal a day to stay awake. So started juicing. Then did drastic diet changes at a suggestion of one of my neurologists, based on another doctor's findings (Dr. T. Wahls). Did the Wahls diet (paleo). After about a year of sticking with it, started noticing it helping the M.S!. Things like my residuals of 7x having optic neuritis went away! Other small things! Yes I still have a long, long list of things from the M.S., but, It's been over 5 years without a single relapse! I continue to push myself to do a minimum of 10K steps a day.
Wear a tracker. It has gone from barely doing 1500 steps/day, to 10K no problem!
I still see my neurologist annually. I was told by a neighbor who also has M.S., and sees my neuro as well, that "I'm his poster patient" loving the results. Though he has told me he's seeing others with the same results from diet, age...
Yes, I used to, and still follow, all the typical M.S. news, but now focus on nutrition for wellness with respect to autoimmune, and just general health, whereas before......not even close. My G.P. is showing me positive improvements in general health, though there was a C scare that was undone with specific diet regarding prostate health, and possibly cannabis? Tests keep saying all's good. But will continue to track, as I have graphed my tests for over 2 decades.
Do vitamins: D3, Multi, B12, Fish Oil, Bacopa, Turmeric, Magnesium Gel Caps b4 Bed for RLS, CBD rich Cannabis for Eve Pain. Healthy Eating. And No Scripts!
Annette here 😁 I am 50 years old and was diagnosed at age 45. I have been fortunate to be with neurologists who specialize in MS my entire time. I started in California but moved to the Carolinas over a year ago.
Decision making has been done by getting input/information from my doctor and some online research. I am a nurse so can usually weed out online hype or misinformation when checking things out.
Being JCV positive played a role in deciding on treatment.
I have been to physical therapy and my husband and son are very supportive as well as my coworkers. I am still able to work full time and hope to do so another 10 years.
hi my name is pamgarner,I have been diagnosed since 2013.I make my decisions for treatment on all the info I can get my hands on I have secondary I am very fortunate ms is just in my legs and feet, so grateful not my arms or eyes.hubby is very supportive,that angel will do anything I need.I have used massage therapy on my legs only,haven't been for a while,but it does help me,I'll go back,money holds me back but I do ask for gift cards from the business for special occasions, a.k.a. mothers day
Hello, my name is Elizabeth and I’m 54 years old. I’ve had MS for 24 years. I currently see a neurologist and physician assistant at an MS center that is over an hour away from my home ( started Ocrevus in January...been on Copaxone, Rebif, Aubagio, and a few others through the years). My local neurologist, who is located about 30 minutes from my home, seems to be losing interest and holds back from offering the most current treatment. I also have been seeing a massage therapist for 24 years. My primary care physician occasionally weighs in, but doesn’t have much of an impact or role in treatment decisions. I am the person who makes my treatment decisions. I have a supportive boyfriend who I discuss these issues with. In terms of resources, I primarily rely on the neurologist and I also read articles online and those that my sister, who is a medical librarian, provides.
Hi im lisa hiatt..dx in 2013...tryed a few ms meds plegrity..avanox..and copaxane..only tryed all of them twice.they knocked me out litterrally...i was going to start on abagio,till the ms clinic tested with Elisa test and looks like i contracted the jcv..so at this time no ms meds..they think ive moved into secondary..its really hard,i get about a day or 2 a week tht i can accually do anything..most of my symptoms are cognitive,very bad,and problems on and eye with eyes,i dont really have any support here,im just so fatigued to go with friends like i used to,,,idk really fighting this alone,my youngest son moved out bout a year ago,and he was my rock...so its really hard,with this illness on top of ive never lived alone ever,,i had 4 boys and a hair salon,,friends,clients,social,i just feel as if well it has ripped everything from me,,i have great drs..never thought going to drs.would be my highlight of the day😔,we are trying to get meds figured out as i just feel n a dark hole..sad..mad..angry..depressed..you know..well i guess i m kinda rambling here. BUT IM STILL PRAYING FOR A MIRACLE!!HAVE BLESSED DAY!!!
I am Linda,I am 71, and I live in North Carolina. I was diagnosed with RRMS in May 1982. There were no DMT available then. I make all my own decisions, I live alone, and I am my own caregiver. I have 1 son, but he lives 150 miles away, and is busy with his own life. I read, I research, and I will risk a trial and see what happens.
I take Vit. D, Vit. B12, a Multi V with Minerals,Curcuma, and I eat a healthy, low fat diet. I have a family of cats and dogs, and I love to garden, especially flowers. I fall, a lot. I have had a couple of very bad falls, but I can still walk, with a cane sometimes, but I can walk. Balance is bad, fatigue is awful, numbness, tingling, dropfoot, pain, aching. Have been in SPMS for about 10 years now, and have not taken any DMT since I was told it was SPMS. I currently see a Neurologist, and my PCP and his PA. I took Copaxone for about 10 years, and Betaseron for around 10 years. Betaseron worked much better for me.
I missed yesterday so I will respond now. My name is Jessie and I'm 40 years old and live in Michigan. I was diagnosed in 2006. I make all my health decisions. I live with family. I'm unable to drive or work due to vertigo almost all the time...some days are worse than others. I can walk and do household chores though sometimes I am too fatigued to do it so it gets put off until another day. Blurred vision is what got me to see an ophthalmologist who could find no reason so he sent me for an MRI. MRI showed lesion that showed like MS. This started my journey with testing and ultimately an MS diagnosis. I was on Copaxone for 12 years but I couldn't do the injections anymore as the spots were not disappearing anymore. I started Tecfidera last year and I am doing great on it.
Hello fellow Warriors! My name is Sue and I was diagnosed in March 2016 via a MRI and lumbar puncture. Problems with my vision and clumsiness started a couple of years prior. I currently see a neurologist who specializes in MS. After being put on Copaxone by my original doctor, he has switched me to Ocrevus. I have my first full infusion May 1st. Hoping for the best, for us all.
I got MS through a different path. I took Humira for my psoriatic arthritis and it demyelinated my brain and spinal cord. It began in January 2015 with double vision and a 6th cranial nerve palsy. I had three episodes of demyelination and it was the third one that converted my demeylination to MS. That was in November 2016. I now walk with a walker, use a manual wheelchair for community access, and a power chair in my residential community near my home and to garden. I am 64 years old.
I am a physical therapist and have gone to PT for a series of treatment twice. I usually go to the physical therapist I know, read the current literature, and talk to other people with MS to find out what works for them. I have also been to the Mayo Clinic in Rochester and Jacksonville and to Northwestern University Hospital, Chicago, IL to be evaluated for stem cell treatment which I did not do. I found out that it involves chemotherapy and is like a bone marrow transplant. UH! I also follow the MS diet and take the supplements in the book entitled "Medical Medium" by Anthony William. The diet is a plant based one and the supplements are Immune boosters.
Hi my name is Bari, I'm almost 69 and I'd been healthy with no issues. I was having neck pain so I went to a Pain Management physician I knew to help mange the pain and he decided I needed an MRI of the cervical region. I had an MRI of the cervical region and there it was, the demyelinating. He told me that was above his "pay range", had me get an MRI of the brain then I was sent to a neurologist who specialized in epilepsy and dabbled in MS. He ordered the spinal tap to look for the oligoclonal bands. Yes they were there and he called me one afternoon and told me I had RRMS. That was in 2017, only 10 days after I retired so happy retirement. That was 2 years ago this coming July 10. I was handed info on "all" the meds for MS - told to pick the one I wanted to use. The neuro then told me he wanted me on Copaxone. So I used it for over a year.
We moved from the DFW area in Nov 2017 and now I'm being seen by a Neurologist who is an MS specialist. I really like this doctor who actually listens to what I say and what I might need. I now take Biotin, Turmeric, Vit D daily and Aubagio - since my Neurologist ordered it in February.
Two weeks ago I had a really bad bout of vertigo including nystagmus, so I think have BPPV. I had to go to the hospital it was so bad and the Neurologist who saw me when I'd been admitted told me to learn how to treat myself on "U-tube". What a doctor to be at a teaching hospital. I'm sure the med students with her learned a lot form that.
My Hubby's there for me and even though I'm a nurse, we both continue to learn what we can about this thing called MS.
I'm not getting treatment right now, I would have to engage with the NHS to get treatment, I was given a nurses number but that stopped working years ago, they do abandon me until I have a crisis then its intravenous steroids. Would love something more proactive
I guess I never saw the day one question but I did see day 2 which to which I just responded. My name is Ellen, I was diagnosed 13 years ago, three years AFTER my daughter (20 at the time) was diagnosed. We are the only family members that I know of with MS.) I went to a General neurologist and stayed with him about 12 years. I have had no progression. I was 57 when I was diagnosed and all my lesions were inactive in 2005 & 7 MRIand he did not recommeded another until 2018. I still had no active lesions. He suggested I have an MS Specialist look at it to be sure, and I decided to stay with the specialist. I had another scan in 2019 and all were not active. With all the reading I do and in discussing it with my new neurologist, I decided to come off medication a couple weeks ago. I am 71 now with minimal symptoms, we made that decision she and I. No team involved. I also Take take a lot of supplements based on a lot of readings and MS blogs.
Hi everyone! My name is Sandy and I live in Mississippi. I am 62 and was diagnosed with RRMS in 1994. I am still seeing the same neuro that diagnosed me. For the first 10 years or so, there were very few overt symptoms. Now, it seems like they are non-stop. I have used several dmts and am currently on Aubagio. Changes in my treatments have been a decision made by my neuro and myself. My husband will often indicate it might be something I should consider based on my physical condition, but there are so many variables that it takes a couple of visits to make a decision. I have tried physical therapy which works for a little while and I now get IV steroids every four months. Every couple of years, I get a lumbar puncture and now get an MRI with and without contrast once a year. I have been on disability for several years now and have managed to complete my BA and am workng on my MA. Trying to stay positive and busy.
Hello. Sorry to be a day late with this! My name is Elaine and I'm 61, and live in NYC. I started having strange symptoms and my neurologist did many tests and eventually diagnosed me with hemiplegic migraines. This fit the symptoms I was having at the time perfectly. After a couple of years, though, I started to get numbness in my right toes. Subsequent MRIs concluded it was MS, not hemiplegic migraines - so in October 2014 I was diagnosed with RRMS in October 2014. I've been using Copaxone since my diagnosis. Any treatment decisions are made primarily by me and the neurologist I currently see who I like very much. I also have chronic back issues from herniated discs and stenosis and sometimes it's hard to sort out the symptoms of that from the MS symptoms. I am blessed to have an amazingly supportive husband who is my rock. I'm also blessed to have two loyal, sweet, smart labradors that keep me going!
My name is Bob and I am64 years old. I have PPMS so treatment options are limited to Ocrevus and none. I was diagnosed in 2013 with RRMS by a general neurologist. I switched to a MS specialist in 2014 who changed the diagnosis to PPMS. My MS doctor started talking about Ocrevus two years before it was approved. She put me on it two years ago June. My wife of 38 years and I make the treatment decisions.
Most of my treatment information is from on line sources. However I am going to get a second opinion from a highly rated MS center.
I do not use any holistic or wellness other than PT. I saw anOT last year and she released me after three visits saying we had accomplished all of our goals. I
I am Leighanne Walker (Female). I live in Arkansas, U.S., in the Ouachita National Forest. I love being outside and gardening. MS has put a damper on being outside in the summer as I am heat sensitive. I do use a cooling vest when the temperature is over 75 degrees. I had previously been diagnosed with Chronic Fatigue Syndrome and Depression in my late 30's. I was diagnosed with RRMS in March 2005, for my 50th Birthday after having numbness on the left side of my face and tongue. I started out immediately on Rebif then switched to Copaxone after 6 months due to the side effects and site reactions. I stayed on Copaxone for 10 years. I changed to Tecfedera and stayed with it for 2 years and changed back to Copaxone 40 after having too many relapses. I just recently switched over to Ocrevus 7 months ago and I am doing great on it. All muscle spasms are gone, and I have energy again without medication. I was on 60 mg. of Baclofen a day and no longer need it. I also have sleep apnea and use a CPAP machine. I have a neurologist and primary care doctors that I see every 6 months unless there is an illness that arises that needs a doctor's attention. I read as much as I can about MS on the internet from various places such as MSAA, NMSS, NEJM. I like to keep up to date on the latest developments in MS research.
Hi, I’m Mj and I’m 66. I was diagnosed in 1975. First symptoms were leg numbness and foot drag. After a bout of partial blindness I was diagnosed correctly. RRMS (although it wasn’t called that then). Prednisone was the only treatment available then. Dealt with MS pretty well until about 2 or 3 years ago. Many more symptoms together. Some remit slightly, some don’t remit at all. Intention tremors, balance issues, foot drop, dizziness, vertigo, “toddler “ walk, extreme fatigue. Bummer. So I guess I’m transitioning to SPMS. My new neurologist prescribed Copaxone and I’m terrified that I cannot afford it. All my decisions are my own with advice from my doctors and my own research. I live alone (and much prefer it that way, lol) and my family all live two or more hours away. But one of my brothers and sisters-in law comes every so often to help me with the big chores I can’t handle. I’m also lucky enough to have a cleaning lady every other week and a yard guy. Love to cook. Do digital art. Life goes on...
Hi! I’m Stacy! I was diagnosed in May 2000 with relapsing remitting MS. I’m 40 years old and see an amazing neurologist at the University of Utah (he has actually moved his practice to Idaho but comes back once a month).
I did almost a year on Avonex before stopping for a pregnancy. Then Rebif was available so I switched to it. I’m fortunate that both have worked fantastically for me. I’ve been on Rebif consistently for 14 years now.
Ampyra was added about a year ago and has been my miracle drug for walking! I even hiked 27.5 miles for spring break! Of course, like most of you, I also take plenty of symptom managing meds and vitamins.
My husband is my caregiver and is great at rubbing achy legs and giving me my shots. My 17 year old son has helped with shots since he was eight and fills in when dad is not around.
I’m actually not on any special diet. I did do dairy free for 6 months for a stomach issue but noticed no change with my MS. So, I keep eating what I want.
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