Multiple Sclerosis (MS) - please introduce yourself

Hi @disneyfan,
How are your side effects tonight? Same, better, worse?

I came across this article from MS News Today https://multiplesclerosisnewstoday.com/2017/04/03/points-multiple-sclerosis-patients-should-know-about-ocrevus-its-use/ It lists some of the possible side effects of Ocrevus as "skin itching, rash and reddening, difficulties breathing, and throat irritation or swelling, flushing, blood pressure drops, fever, fatigue, headache, dizziness, nausea, and a racing heartbeat." Some of these may be related to your feelings of swollen glands and numbness. Have you told your doctor about these symptoms you're having? I think you should.

I am going to check with my doctor and thanks for the info from the article. I am about the same, maybe a little less swelling. I have these symptoms every day, some days they get a little better but then it goes back to hurting like it always does. It never goes totally away.

So happy to have found this group. I was diagnosed with ms in 2012, December. at the same time I was also diagnosed with lupus. I am also bipolar, and have degenerative scoliosis, panic disorder, and ptsd. whew I think I got them all. haha gotta laugh i'm thru crying but I stay confused. I have 50 lesions and I think there all on the part of my brain that causes and controls moods, ie. bipolar, etc. I do have balance problems. I was diagnosed after I went to the er one day. I had been driving a lot looking for a job when I started seeing double so for three days I just drove with one eye shut. And for as long as I can remember whenever I get really tired/sleepy I start seeing double. I just thought that was normal that it happened to everyone. but I decided to go on to the er where they did a mri which was used to diagnose me. I just don't understand like what i'm suppose to do when I have a painful flare up. I already stay in moderately severe chronic pain so does a flare up consist or worse pain, should I call the doc then? what is the difference between a lupus flare up and ms flare up? So many questions that need answering and I just confused. And even if I make a list for the doc I forget the important ones like the ones I have posted here. I even ask the doc's nurse how to tell the difference between lupus and ms flares and she said that it was hard to tell sometimes. That is all I got out of her. Gee thanks.

Hello @lilgrizz

I can understand the difficulty in differentiating between the various disorders and symptoms. Regarding MS, you are in good company with the MS discussion. Here is a website from the National MS Society regarding flare-ups, pain and some of the treatments that help, http://www.nationalmssociety.org/Treating-MS/Managing-Relapses. Many of our members have treated with different meds and exercise routines. Water exercise tends to be very good, as the water keeps you cool and yet you can work on range of motion which is so important.

What type of physical therapy and/or exercise programs have you tried?

Teresa

Hi, I recently found out that I have a brain lesion but they have not told me that I have MS...at least not yet. Have been living with symptoms for some time but my doctors are kinda slow at telling me stuff. Some of them just blow me off and tell me I am just too fat.

Hello @sauvee and welcome to the MS discussion.

It sounds as if you have had a lot of symptoms in the past. Did those symptoms lead to the MRI? Diagnosing neurological problems can be a slow and arduous journey. Often it takes a while for there to be concrete evidence of a disorder.

Did your doctor mention any further testing to follow up on the brain lesions? If not, this might be a good question to direct to your doctor.

Teresa

Thanks for the link to the website. gonna check it out here in a sec. As far as physical therapy or exercise goes there has been none. I have either been to lazy, to tired, hurting to bad, or .....you get the picture. I can come up with a million excuses to stay OUT of the gym. I know exercise would be tremendously beneficial and my dad said he would pay for my gym membership just today if i promised that i would go. So tuesday me and my mom and dad are all starting exercising. Wish me luck.

My legs have been getting better and I can walk some without my cane and I am stable, not wobbly. I am not doing so well from the hips up but any improvement I am happy about. My doctor said those symptoms I was experiencing were not side effects of the Ocrevus, it was the MS progressing. The tight neck muscle, the swollen glands, and the ear hearing muffled sounds are still there. I have a Dr. Appt. with my neurologist next month.

@disneyfan
We are so happy that you updated us! Some improvement is great!!

Teresa

Its been awhile since I wrote so I wanted to let everyone know I am doing OK. I saw my neurologist and she had me get my blood work done to get ready for my next infusion. Now all I have to do is get the MRI's done before my next appointment with her. Since the first 2 infusions I have gotten a lot more use out of the legs. I am walking more each day to build up my strength and stamina. Recently I have been getting numbness in my arms and my hands get stiff the more I use them. I also still have the numb face, plugged ear and ringing sounds in it, and headaches. I wonder why I am getting that? Something new that is going on I feel silly mentioning but I will.I get this feeling all over my skin that something is crawling on me but there isn't. Does this happen to anyone else, and what is it?