what are infusions like?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

what are infusions like?

Postby ebrownkirkland » Tue Jun 27, 2017 7:56 am

Hi there. My doctor just diagnosed me with "clinically isolated syndrome" because they found a lesion in my brain that is characteristic size and location for an MS lesion. He is sending me for three days of IV steroids (he said it will likely take one hour per day). Between now and when I have my infusion he wants me to have an MRI of my thoracic spine to see if I have lesion(s) there, too. (He said the issues I'm experiencing with my legs point to a lesion in my spinal cord.) Just wondering about the infusion... I've never had one before. What does it feel like and what should I expect pre- and post-infusion? Thanks.
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am

Advertisement

Re: what are infusions like?

Postby Zyklon » Tue Jun 27, 2017 9:23 am

Hi ebrownkirkland. Have a light meal 1 hour before. You must stay away from salt for some time, even after steroids. Drink plenty water.

I experienced increased heart rate because infusion was fast. One and half hours was great for me. Everyday I got better.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: what are infusions like?

Postby ebrownkirkland » Tue Jun 27, 2017 11:46 am

Thanks, Zyklon. Really appreciate it. So do you think it will help me with the pain I'm having in my legs? About four weeks ago I started having tingling and numbness, and then I began experiencing pain in my calves. It started with a tightness in my right calf and then it became painful--like super bad shin splints. Now, in the afternoons and evenings, usually around 2 pm and later, I am in a world of hurt. My doctor prescribed me Baclofen, and it's really helpful, but will the steroids help with the pain as well?
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am

Re: what are infusions like?

Postby Zyklon » Tue Jun 27, 2017 1:11 pm

Most likely it will help.

I had similar symptoms and infusions greatly improved my condition day by day. Please read this: introductions-f20/topic28969.html

Get vitamin D3, B12 tests and thoracic, cervical MRIs as soon as possible.

Take care of yourself, first days are very important ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: what are infusions like?

Postby NHE » Tue Jun 27, 2017 10:07 pm

ebrownkirkland wrote:Just wondering about the infusion... I've never had one before. What does it feel like and what should I expect pre- and post-infusion?

My last IV steroid infusion...

Given as an inpatient.

Day 1: Felt more clear headed
Day 2: Felt blah and a little run down
Day 3: Became unusually emotional

Results: The infusions really didn't change my symptoms. I discovered later that I was B12 and folate deficient. This may have been a factor.

My previous infusion...

Given as an outpatient. I had a bit of what appeared to be anxiety attack while I was on the phone with someone. My head was racing faster than my mouth could've kept up so rather than scream at the person on the phone I forced myself to be quiet. I also developed an opportunistic bacterial infection in a fingernail cuticle so I needed to go on antibiotics. This made my stomach feel awful until I wound up eating some yogurt.

The infusion before that was during my hospital stay when I was diagnosed. It seemed to help clear up my optic neuritis though my eye was still sensitive to heat for 6-9 months afterwards.
User avatar
NHE
Volunteer Moderator
 
Posts: 4563
Joined: Sat Nov 20, 2004 3:00 pm

Re: what are infusions like?

Postby ebrownkirkland » Wed Jun 28, 2017 9:51 am

Thanks, Zyklon and NHE. I have had my B12 and D levels checked. D is much lower than my doctor would like to see (it was 36) so I'm taking supplements now. I also take a B12 supplement since my B12 tends to be low, too, but it's back up now (at last check it was around 600). MRI of the cervical spine is clear... MRI of the thoracic spine will be Friday.

I still think MS is kind of a far out diagnosis. I mean, my husband was just diagnosed with it a month ago. What are the odds?? But, I've seen two different MS specialists and both say what I have is likely early MS, since I'm having a lot of symptoms (latest is weakness, numbness, and now spasms in my legs) and an MRI found an 8-9 mm lesion "adjacent to the right lateral ventricular atrium" in my brain that enhanced with contrast. They're running more tests to be sure, though.

I am looking into the possibility of spinal stenosis, in the meantime... That runs in my family, and would make sense given the issues I'm having in my legs (although the pain I have doesn't start in my hips or buttocks, which apparently is pretty classic spinal stenosis).

With MS, do you have good days and bad days in terms of pain and pins and needles? I've had some pins and needles today but not so much pain in my calves. Not complaining... Just wondering. Wouldn't I be in constant pain or having constant pins and needles if there was a lesion in my thoracic spine, as the doctors think there is?
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am

Re: what are infusions like?

Postby Zyklon » Wed Jun 28, 2017 1:10 pm

36 nmol/L? or ng/mL? If it is 36 nmol/L, you are dangerously low.

Sometimes I have pins and needles in my arms. It goes away in a few hours, one day max. Same goes for numbness in my feet fingers. Active lesions mean inflammation and most likely constant or increasing symptoms.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: what are infusions like?

Postby ebrownkirkland » Thu Jun 29, 2017 4:53 am

I'm not sure about the vitamin D... I just know that the "normal" started at 30 and my level was 36.

As far as my pain level and pins and needles go, I think I spoke too soon. I was in SEVERE pain last night with my right leg especially. Took a Baclofen around 7:30 or 8 and I'm in pain again this morning. This is going to be a rough day. I have already started my day with a couple of ibuprofen and I'm trying to power through to lunch when I can take half a Baclofen.
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am

Re: what are infusions like?

Postby Zyklon » Thu Jun 29, 2017 8:05 am

It must be ng/mL. 36 is not bad but can be better. Did you have thoracic and cervical MRI?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
 
Posts: 184
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: what are infusions like?

Postby ebrownkirkland » Thu Jun 29, 2017 12:29 pm

Zyklon, I had an MRI of my c-spine but not my thoracic. Cervical spine was okay except for some degenerative and bulging discs (no lesions)... I have the MRI of my thoracic tomorrow, with and without contrast. Two separate MS specialists said they expect to see a lesion there given my symptoms.
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am

Re: what are infusions like?

Postby MSKarateka » Thu Jun 29, 2017 4:23 pm

My infusions gave me bad heartburn and only 4 hours of sleep for 3 or 4 nights. I did not feel tired, but at the same energy level.
MSKarateka
Family Member
 
Posts: 50
Joined: Sat Mar 04, 2017 2:42 pm
Location: Central Maine

Re: what are infusions like?

Postby ebrownkirkland » Wed Jul 05, 2017 10:30 am

Had my first infusion today. Took about 45 minutes or so. Not bad except I think the nurse hit a nerve in my hand and it hurt while I was getting the infusion as a result, and then after, too. It's still sore where she put the needle in. :(

The report for the MRI of my thoracic came back... No lesions. Wondering what the doctor will do insofar as treatment. Guessing he may just continue to monitor me and then treat if another lesion pops up.
ebrownkirkland
Family Member
 
Posts: 64
Joined: Tue Jan 17, 2017 7:22 am


Return to Undiagnosed

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service