Multiple Sclerosis (MS) - please introduce yourself

Had my 3 MRI's today and it took 2 hours. Laying on that hard table really hurt me and I came home and rested for awhile. I am still getting fatigued a lot and I did laundry on Thursday and got my hair cut and went shopping on Friday and afterwards I had to rest. It seems like I can only do 1thing and I get tired. I know the Ocrevus is working because my legs are better but some areas that were fine now have problems. I hope the infusions are not too far apart and my legs start to get worse.

Hello @disneyfan

It is so good of you to keep us updated. I'm glad that you are noticing relief with your infusions of Ocrevus. All of us, with chronic illnesses, especially those of a neurological origin, have to pace ourselves and not do too much in one day and not too many things for multiple days in a row. I hope that you continue to find relief and also find a balance with activities and rest!

If you are comfortable doing so, could you let us know if your MRI shows any improvements?

Teresa

Hello @disneyfan

I read an article today in an email that I receive from MS News Today and I thought it might interest you, it is about how European doctors are considering a new MS drug in addition to Ocrevus. Here is the link to the article, https://multiplesclerosisnewstoday.com/2017/11/28/survey-shows-european-neurologists-ready-to-use-ms-therapies-mavenclad-and-ocrevus/

The last time you posted you mentioned having several MRIs as well as lab work. I hope that the results were positive. Are your legs still feeling better with the MS treatment? In your last post you mentioned increased stamina and strength. I hope that is still the case.

We look forward to hearing from you.

Teresa

My 69 yr old husband has primary progressive MS. The majority of his lesions are in the brain which is causing some Parkinson's symptoms in addition to some really strange sensations in his head. Examples:. Feeling like water is sloshing in his head, feeling like water bullets are firing in his head and eyes. His neurologists do not see to understand how he is tortured by these sensations. The gabapentin he takes does not help. Are any members or someone you know experiencing anything similar?

Hello @flowbluelady, welcome to Mayo Clinic Connect. I did find a couple of other links that may describe some of the symptoms your husband is having that are associated with MS.

NIH - Paroxysmal symptoms in multiple sclerosis masquerading as transient ischaemic attacks
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029382/

MS Focus Magazine - Coping with Paroxysmal Symptoms
-- https://msfocusmagazine.org/Magazine/Magazine-Items/Coping-with-Paroxysmal-Symptoms

Have you mentioned to the doctors that the gabapentin is not helping?

John

@johnbishop

Thank you for the links. I will check them out. This is my first attempt at connecting with an online group. I look forward to connecting with others who migjt can provide helpful info.

Yes, the doctors know the gabapentin is not helping the symptoms I mentioned. They have played around with his dosage to see if it does. However, he continues to take it because it does help with other symptoms. His next appt is next month, and we will address it again.

Thanks again for your info.
Betty

@colleenyoung ,

My 69 yr old husband has primary progressive MS with most of his lesions on the brain. I am always searching for info to help him with this terrible disease.
Betty

Hi @flowbluelady, welcome to the MS group on Connect, where you'll meet other members like @disneyfan @ricksraleigh @ydawson @tashanharrell @kcowan16 @sauvee and others. @kariulrich's sister was recently diagnosed with MS and like you is learning more about the condition to support a loved one.

FlowBlueLady, while we wait for others to join the conversation, can you share a bit more about you and your husband? What symptoms does he deal with at the moment? How are you doing?

I am here on behalf of a friend. The left side of her face is tingly and numb. She went in for an MRI and they found 2 lesions on her brain. One is at the Cerebellum, close to the sensory nerve. the neurologist wants to do a 2nd MRI to see if it has grown, a month later. Thinking it might possibly be Multiple Sclerosis, they will test for that on May 1st. The 1st MRI was done on 2-20-19. The 2nd will be done approx 4-12-19. Concerned about waiting to do these tests and if it is growing, is it not good to wait? Has anyone been through something similar. I would appreciate your feedback.

Hi, @camper, and welcome to Mayo Clinic Connect. You must be a very caring friend to be standing by her side and looking into this on her behalf.

You may have noticed I moved your post to this existing discussion on multiple sclerosis (MS) so that you can connect with others with similar experiences. Simply click VIEW & REPLY in order to read what others have said.

I'd like to encourage @flowbluelady @disneyfan @ricksraleigh @ydawson @tashanharrell @kcowan16 @sauvee and @kariulrich to offer their support as you seek to help your friend as she waits for the 2nd MRI a month after her 1st to see if the 2 lesions have grown and assess whether she may have MS. They may be able to offer some insights on whether this is good to wait for the next MRI if these are indeed growing.

How is your friend feeling about the waiting period, @camper?