Multiple Sclerosis (MS) - please introduce yourself
Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.
Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
My first dose of Ocrevus went OK, I had a fever and headache afterwards. My head felt woozy for a couple of days and I was moving real slow. I started having symptoms in Jan 2016 and my first trip to Mayo was July 2016. My neurologist diagnosed me with neuropathy but she wanted me to go somewhere so I could find out why I had all these weird occurrences she couldn’t explain. I returned to Mayo in Oct. and Dec. of 2016. They did tests that confirmed my small fiber neoropathy. I had MRI’s done and they were compared to previous ones I had which showed more white spots each time(I have seizures so it was hard to see what was happening). The test that helped with the diagnosis was a spinal tap which showed numerous lesions on the spine and other abnormalities. My last visit to Mayo was in March of 2017 and that is when I finally got the diagnosis.
I was not diagnosed with M.S!!! I was diagnosed with Adheisive Arachnoiditis!!
Thanks for sharing your story, @disneyfan. You displayed a remarkable persistence in finding the cause of your symptoms – which certainly were complex. How often will you be having the Ocrevus treatments? Did your doctor give you any idea as to when you might experience some relief from your symptoms? Teresa
Hello @tammynorpel68, and welcome to Connect. May I suggest checking out this discussion where other members discuss arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/?
I have my next treatment of Ocrevus 2 weeks after the first one and then I will have treatments every 6 months. My doctor said that since I was just diagnosed with primary progressive MS(PPMS) and they just came out with the first drug for this kind of MS she thinks that it will keep my condition stable and that it will not get any worse. She says that there is a chance that the myelin will start to heal itself with the medicine because my condition just started and I started the drug quickly. She hopes that I get lucky and it gets better. It is very hard getting used to not doing things you did before. I used to spend all my time outside working in the vegetable or flower garden orworking in the garage. Now, I work outside for 45 minutes and go in and rest for 2 or 3 hours and then go out and work for another 45 minutes and then I am wiped out for the rest of the day.
@disneyfan I am excited to hear that there is a new medication that might actually help the myelin to heal itself – that would be great. From those who have MS, I think that the fatigue is probably one of the most significant symptom. You really have to measure your activity level and sometimes limit your activities and stop before you get tired. It is a hard adjustment, isn’t it?
Kim, Welcome my name is Rob and I can imagine what you feel like. I had some symptoms starting in Nov. 2015 and they got so bad I had to stop working in Jan. 2016. My neurologist found out I had neuropathy from an EMG and a nerve biopsy but she wanted me to go to specialists to find out why I had all these odd symptoms. I went to Mayo in July 2016 and again in Oct. and Dec. My last and hopefully final trip to Mayo was in March 2017 when I was diagnosed with primary progressive MS. This is after having fibromyalgia for 20 years, seizures for 10 years, diabetes for 5 years and 5 car accidents in the last 12 years. After one car accident they found out I had sleep apnea so now I use a CPAP and after one they found out I had borderline narcolepsy. After one I blacked out so they think I had a seizure but who knows. I am numb from my hips to my toes and my hips are stiff constantly. I have blurred vision in one eye and I get a lot of headaches(I get Botox for migraines). I get shooting pain to my fingers and my back and neck hurt constantly . Sometimes my lower back feels numb and my neck is all knotted up. My legs always feel cold but my upper body is sweaty because a medicine I took for my hyperhydrosis I had to stop because its side effect was cognitive impairment and I have had memory loss for a couple of years. I can’t sleep with the covers on because I sweat so I don’t use covers and I have to sleep with a fan. All my clothes are X-temp, Dri-fit or Cool temp. I used to love the outdoors and was outside in the vegetable or flower gardens or working in the garage. Now I go outside and work for 45 minutes and I have to come in and rest for 2-3 hours and then I can work for another 45 minutes and I am wiped out and I can barely move my arms without the muscles shooting pain everywhere. Oh yeah it is hard for meto sleep as you can seethe time of this. Talk to you later, hopefully.
Today I rested all day except for the time I went outside and cooked on the grill. Tomorrow is my 2nd infusion of Ocrevus and I was so fatigued and sore today I wanted to take it easy so I can get through tomorrow. On Saturday I pulled weeds and trimmed bushes in the morning for an hour and then I had to go in and rest for about 2 hours. Then I raked, watered the vegetable and flower garden, and filled the bird feeders for about an hour and then I was tired so I went in to lie down. I cooked out on the grill that night and was wiped out after that. On Sunday I woke up with a migraine and we went to church. All I did in the afternoon was water the gardens and feed the birds. Then today I woke up with my legs stiff and my hips hurt. When I walked I was wobbling and I had a migraine and was dizzy. My shoulders felt like prickly pins and it hurt to raise my arms up. My muscles were twitching and shooting pulses down my fingers. I guess I am figuring out my limitations and I hope the Ocrevus works.
Had my 2nd infusion of Ocrevus yesterday. I napped when I got home because I wasn’t feeling well. I was dizzy, walking slow and unsteady, my hand was numb, my hips were stiff, my legs were numb and I had electric pulses shooting down them and I had a migraine. I slept downstairs in a recliner with my feet up and on a pillow. I felt better today when I got up, all I had was my headache and my legs still had the shooting pain. I was still walking slow but steady and my energy level was low. I’m resting so I think I will be better soon.
Thank you for checking in and updating us after your second treatment. I’m sorry to hear that the treatment left you feeling so ill. I hope that by tomorrow you will be better than ever. Did your doctor indicate how long the side-effects will last?