Patient Comments: Multiple Sclerosis (MS) - Treatment

Question:

What treatment have you had for multiple sclerosis? Submit Your Comment

Comment from: Ron V, 55-64 Male (Patient) Published: July 08

I was diagnosed with multiple sclerosis in 95 but had my first symptoms in 87. I tried Betaseron for about 6 years or so. In 2012 I went to a care facility, life was too difficult at home for my wife and family. I have tried several types of medications. I think you just have to let it run its course; currently both my legs are spasming mostly at night which makes sleeping difficult.

Comment from: sukh, 19-24 Female (Patient) Published: October 13

Symptoms of multiple sclerosis occurred in 2013 but not understood. I was diagnosed in July 2014 (MRI). Treatment started with 1 gm steroid injection IV with 100 ml saline for 5 days tapered to oral 50 mg for 10 days, 40 mg for 10 days, 30 mg for 10 days, 20 mg for 10 days, 10 mg for 10 days 5 mg for 10 days, and finally 5 mg alternate days 10 times. I had improved walking balance, increased appetite, increased sugar demand, improved eyesight blurring, and improved mood swings. I also had interferon (glatiramer acetate (GA) 20 ml) injections in stomach/thigh region for 6 months, daily initially. Now the steroids are almost over, the appetite has gone down, and mood swings increased a bit. Urine urgency improved a bit after 7 GA injections, constipation is chronic and no improvement. I’m still using laxatives. Homeopathy medicine to improve symptoms is being started alongside today (10/10/2014).

Comment from: Alecia, 45-54 Female (Patient) Published: September 04

I was diagnosed with multiple sclerosis 1 month after I turned 50. My grandma is 96 and had it since she was in her 20s. I have been on Copaxone, the first year was daily and now I am on 40 mg, 3 times a week. It has made a tremendous difference for me. Although the fatigue is what really gets to me. When I do too much, I do start to feel weak.

Comment from: Nini, 65-74 Female (Caregiver) Published: April 21

My 42 year old daughter was diagnosed with the relapsing-remitting form of multiple sclerosis (MS) 10 years ago. During the interview back then, it was suggested that she probably was first affected during college in 1990 when she suffered from hypothermia. Fast forward to some 5 months ago, Gilenya was discontinued by her insurance [she was never notified]; when she contacted the medical center, she was told her neurologist was no longer there and she was scheduled for an appointment April 29th 2014! About February 26th, she started the mother of all relapses, and still suffers from every possible symptom, but for memory loss [so far]. She was prescribed Copaxone and is on her 2nd week of medications. Sadly, this medicine has no impact on her current relapse. I am hoping and waiting. She has a wonderful new neurologist and we await any sign of improvement.

Comment from: laurelin, 25-34 Female (Patient) Published: June 13

I have had multiple sclerosis for half my life, I am 34. I recently started Tecfidera. I see no mental side effects, but I feel really wrong and family and friends don’t want to be around me.

Comment from: Heart burn, 45-54 Female (Patient) Published: June 14

I have severe heartburn and indigestion and my chest feels like it’s going to explode. I have pain below my ribs, above my ribs, and below my belly. I wonder if it is pneumonia.

Comment from: aliblu2888, 45-54 Female (Patient) Published: April 11

I was told 10 years ago I had multiple sclerosis (MS) and that I would be in a wheel chair in 10 years. Well I"m not. I think a lot has to do with staying busy. I do this around the house and yard, take family/friend places, also a lot has to do with the medicine I take (injections 3 times a week), Rebif.

Comment from: cherie, 65-74 Female (Patient) Published: January 08

I took Avonex for about ten years. I stopped because of elevated liver enzyme levels. I have frequent urinary tract infections, muscle spasms, drag my right foot, can't walk without the aid of walkers or a power chair. I have no balance and my back is very painful when I try to stand up straight, my legs give out on me and I can't get up, I'm like limp noodle. I fatigue very fast. I have diabetes, and struggle with my blood sugar levels. I'm over weight. I had open heart surgery, valve and triple bypass, but unable to exercise or walk.

Comment from: Robyn, 45-54 Female (Patient) Published: January 02

There is really nothing currently for secondary progressive multiple sclerosis. When I had relapse I tried Avonex. I'm also on baclofen for muscle spasms, and Norco for pain. All of these meds deal with symptoms not a cure! How about something to make these symptoms go away!

Comment from: mgoekster, 65-74 Male (Patient) Published: December 30

I was diagnosed with multiple sclerosis at age 50. I am still mobile but now use a cane. I have balance issues and some falling. I only take baclofen as the injectable medicine did seem to help. I am about to try other oral medicines.

QUESTION

What kind of disease is multiple sclerosis? See Answer
Comment from: Lin, 65-74 Female (Patient) Published: December 19

I have Avonex. I had one serious flare up in 2000 which led to my diagnosis. I started on Avonex then and have been on it ever since. I have had no side effects nor flare ups since I started on the Avonex.

Comment from: Tina, 45-54 Female (Patient) Published: April 12

I was diagnosed with MS in 2005 at the age of 44. I woke up one morning with numbness in my lower back and right leg. This was on a Thursday. By the weekend I was totally numb from the waist down. I couldn't feel my feet touching the floor. I saw my doctor on Monday and had an MRI to see if I had a disc problem. It was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine – MS. I did the steroid treatments for three days, got my feeling back, then went numb from the waist up. I received more steroid treatments. My neurologist and I decided to go with the Rebif therapy. I have been taking shots since 2005 and nobody would ever know that I have MS. I lead a totally normal life. My doctor started me on medication immediately and I believe that is why my symptoms are gone. My lesions have even shrunk.

Comment from: Warrior Pilot, 25-34 Male (Patient) Published: November 16

I was diagnosed with RLS (restless legs) during my military retirement in 2008. Symptoms were legs twitching when going to sleep. Early 2011, I was sent to a neurologist who diagnosed me with RLS and PLMS (periodic limb movement) because it was happening when sitting for long periods (30+ minutes). Eventually more lower body numbness, tingling, pain and balance issues required an MRI and spinal tap. It concluded MS in OCT 2011. I have normal days if I get a lot of rest but stress and lack of sleep trigger all of the above symptoms. Klonopin works great at night but makes me drowsy in the day. I'm seeing that all MS patients have very different symptoms. Positive attitude really does help so far.

Comment from: 25-34 Female Published: August 26

My daughter was diagnosed with MS at 19 but had shingles at the age of 11, glandular fever at the age of 14, and optic neuritis at the age 16. She has taken copaxone every day for the last two years. She has a hectic working life and copes well with her disease by being positive, having healing sessions, meditation, and tries to keep stress to a minimum. We have noticed that she has less mood swings and looks healthier for it.

Comment from: mbardi, 35-44 Female (Caregiver) Published: January 31

I have a Father-in-law with MS he's 52 years of age has had MS since 06. He was on tysabri, had a relapse last week. The doctors are saying MRI is good, but he has UTI, then it turned into you need surgery. My father-in-law isn't a pleasant man, but he's a human being. He tells us one thing and tells the doctors what they want to hear, he is now in rehab to get strength back into left side of body, has no function of the left side. Doctors won’t talk to us. We are scared to death because he has it set up that way. That is very hard to swallow when you are the one taking care of him. God Bless everyone who has MS, it's a horrible thing to have and I wish they can find a cure.

Comment from: melissawesley, 45-54 Female (Caregiver) Published: January 10

For multiple sclerosis we got her Copaxone treatments and physical therapy with occupational therapy. She is still having problems with memory loss and very frequent confusions in thought and cognitive thinking.

Comment from: teeni, 35-44 Female (Patient) Published: August 08

I'm so glad to find a way to learn about other people’s battle with MS. I was 38 when my first symptoms appeared. I worked really long hours at the business i was supposed to buy, needless to say that never happened. But it is so true what you said about early treatment is so important I had to wait 2 years for any treatment and the MS is way ahead of most at this age so anyone who reads this please do everything you can to get early treatment.

Comment from: 55-64 Female (Patient) Published: May 21

I was diagnosed with MS in 1998 and put on Avonex immediately. I also discovered the Swank MS diet and went on it soon after being diagnosed. A few years later, my liver enzymes were affected and my neurologist said she had other patients who were just on the Swank diet, so I went off the Avonex and have just been on the diet for several years. Now, 15 years after my diagnosis, my annual MRI shows no additional lesions and I have no disability. I work as a realtor and interior designer and am on my feet all day. I am 63 and going strong.

Comment from: Cherrybabz, 55-64 Female (Patient) Published: April 25

I am 59 years young and I have been extremely lucky. I was diagnosed when I was 25 and had just given birth. Nobody in my family has it. Two months later, I was paralyzed for a while. I had taken mega doses of prednisone for a few years and I was sick of taking it every time I got an episode, so I decided I was the boss of me, did not take any of the steroids, and cut out red meat, took vitamin D tablets, and got onto an exercise and weight-resistant program that I still do. I have no symptoms. No weakness, no numbness, no tingling, no fatigue – nothing. I am extremely blessed, but I believe in not taking chances, either. I stick to my regime. Because of taking so much prednisone, I got diabetes and I am working on that now. My blood sugar level average is 5.5.

SLIDESHOW

What Is Multiple Sclerosis? MS Symptoms, Causes, Diagnosis See Slideshow
Comment from: lucky veggie eater, Female (Patient) Published: February 01

I have had MS since I was 27 years old. It started with retrobulbar optic neuritis. My vision returned to normal and I am now in my 50's with no symptoms. I have been on a basic diet since then and I do not eat meat, only fish. I now take Copaxone shots once a day since the age of 35.

Published: January 14

I receive IVIG infusions 3 times a month and I take Rebif.

Comment from: Trying to help, 65-74 Female (Patient) Published: January 07

I was diagnosed with MS in 1987. I started on Copaxone in Nov 2003. There have been no adverse effects from Copaxone, other than the momentary soreness and swelling for a day or so. My condition has changed only slightly since 2003. I am very pleased with my treatment. I eat well, sleep well and exercise regularly. My attitude is extremely positive. I feel that this has also helped my condition. Since 2004 I have only had two minor relapses. Copaxone is a wonderful treatment for those that it works for.

Comment from: lene, 25-34 Female (Patient) Published: September 27

I was 14 years old when I was diagnosed with multiple sclerosis. The symptoms that I have encountered are headache and blurring of vision for a week and then total loss of vision. My doctor asked for an MRI for my brain, and lumbar tap. The medications I took were Methylprednisolone injection every 6 hours for 10 days then shift to prednisone tablet. I stayed in the hospital for almost a month. The doctor said that I had a scar inside my right eye and started wearing glasses since then.

Comment from: 55-64 Female (Patient) Published: July 24

I was diagnosed in 2006 with multiple sclerosis, the only symptoms at that time were falling and legs hurting and moving all the time. I remember no symptoms at all until last year. I went into full seizure mode, I was put on Avonex. I had the symptoms of that medication every day for 13 weeks, I mean I was so sick every day. I stopped that medication and a few days later I was back to my normal self. Then a few weeks later I started having attacks every week and now I’m really bad. It's like one long attack every day. My upstairs neighbors cause me great anxiety every day. I have gotten a new neurologist and she wants to start me on the Copaxone and I do not know what to expect? I know I hurt from when I wake up until I go to sleep. Is there someone that can tell me about their experience on Copaxone? I would sure love to hear about it.

Comment from: Servant, 35-44 Female (Patient) Published: June 09

Hi All, Apparently I have had MS for many years, but it was never truly diagnosed until recently. In my early 20's I was symptomatic. (Sudden inflammation that caused me to not be able to move limbs, skin tingling, weakness in my extremities) The one thing that i am able to say about this process is that I have been living with MS for many years and I do mean living. I enjoy all of the things that I always did but the one thing I am certain of is that you must be able to take the good with the bad and let the worry roll off of you because it is the worry that will keep you sick and the desire to keep living as you live daily that will keep you well. One day at a time we can and do survive this disease. Be blessed all of you living with this.

Comment from: NOENA, 19-24 Female (Patient) Published: July 24

You have to change your lifestyle with multiple sclerosis. First from school or from work, as soon as you get back home, just don't take a shower, take note you’re tired, you have to stop and rest for about two hours, let your body rest. Next the myelin sheet or that covering on the neurons /roots is being deteriorated, basically your deficient on Vitamin b12. Don’t abuse your body on work. Rest! MS is just a stress from your own lifestyle. I have multiple sclerosis, but I’m moving on. I take USANA food supplements with Vitamin b12.

Comment from: Kristi b, 55-64 Female (Patient) Published: April 12

My multiple sclerosis doctor has not seen this, so help me out. 27 years ago I was diagnosed with MS due to an vision issue and tingling. This lasted only weeks...nothing for all these years and then over the past 13 months I have had increased facial nerve problems...eye lid doesn't close, facial muscles not working on the left side, can't smile, unable to raise left eye brow. I look like I had a stroke!

Comment from: alw0502, 45-54 Female (Patient) Published: March 03

I was diagnosed with multiple sclerosis in December 2009. The only symptoms that I have are tingling feet and hot/cold sensations on my legs. I still exercise daily and do not have issues with heat or fatigue. I have not started any type of DMDs (medications). I have only had one relapse that required steriods since my diagnosis.

Comment from: honeygu, 75 or over Female (Patient) Published: February 28

My Multiple Sclerosis symptoms are: pain that started from the side of my knee to my foot. X-Ray showed a disc leaning on a nerve. I was in therapy for 3 1/2 months before my therapist discovered foot drop (or drop foot). I called my primary and requested a MRI. Primary told me I do not have MS, but when I asked how he can be sure, he dismisses my symptoms, which are blurred vision, drop foot, weakness in leg. I also seem to have some memory issues. I realize I am elderly, but all of these symptoms occurred following the incident. I am still having symptoms (except no pain) one year later.

Comment from: Granville, 65-74 Male (Patient) Published: February 24

I am current on the usual suspects for multiple sclerosis: muscle relaxants, SSRIs, pain medications, Porvigil, Ditropan, and Gabapintin. For 5 years I was on daily injections of Copaxone. I changed physicians and was taken off Copaxone. I haven't felt the same since.

Comment from: sweetpea62308, 45-54 Female (Patient) Published: February 04

In 2006 I was diagnosed with MS. I had 4 lesions, I underwent the 4 days of solumedral. I had EMG's done. Never did the Dr. order me MS meds. I saw 3 doctors about this. Now after 4 years they tell me I do not have it. I am so frustrated that I have no trust for the medical profession. I worked in the medical profession for over 30 years and I am treated like a second class patient.

Comment from: nana, 55-64 Female (Patient) Published: February 15

I am a 64 year old female, diagnosed in 2001. Came on all of a sudden in 1999. Was not able to go back to work. Tried every shot available, all made me sick. Then in 2009 went on Tysabri (please read all side effects before taking, then you decide). I took nine infusions, then stopped, felt like it was slowly killing me. It progressed my MS more in nine months than I had in the previous 10 years. All medications out there are for Relapsing which I do not have. Maybe someday they will find a medicine for the percentage of people who do not have RAR.

Comment from: Megan, 45-54 Female (Patient) Published: October 29

The best thing you can do for yourself is have a good attitude. Even when you feel you cannot. My entire left side melts when stress is apparent. I was diagnosed 22 years ago. You might have MS, but don't let it have you.

Comment from: BLT, 45-54 Female (Patient) Published: June 21

I have had multiple sclerosis for 20 years now. I take no kind of medications for it. The worst thing that happens is I get overheated. Over the years I can tell when I get too hot. I run into the shower and cool down, even ask people in their yard to spray me with a hose. I may look funny, but it stops an attack for me.

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